I've just posted all my "lost posts". Drafts I started and never finished. Thoughts I wrote down but for some reason..just didn't want to share in this forum.
One of which was a letter I composed to Ava's Neurologist. I never had an opportunity to give him that letter...because only a few short days after that Ava ended up at Hasbro Children's Hospital for one of the most difficult stays we've ever had.....and we've had many. So lucky for me...I just told him face to face.
She was having 300+ szs per day and as soon as they saw her in the Clinic..she was admitted immediately. Banzel (Rufinamide) proved to be an absolute disaster for her after 8 terrible days. So to make a long story short...she is off the Diacomit (Stripentol) that she had been on for the better part of 2 years and began Zonegran (Zonisamide) along with her regular regimen of Topamax (Topiramate) and Clobazam. We also re-initiated a Modified Atkins diet.
It seems as though...in two years time we've had a complete 360 degree experience and we are now back to square one. Back to the same exact place we were then...at 2 years old.
Desperate.
Since leaving the hospital we've had a week or so honeymoom with this new regimen. Little to no seizure activity....a cruel trick this game plays on us from time to time. I must say.....we've had other honeymooms before.......
6 weeks with ACTH......Like the first honeymoom...just when you start to relax it's time to go back home....and boy did we ever!
6 weeks with Keppra.....the unplanned cruise type....your so happy to get away that you don't even think about going home until it slaps you in the face.
Then a quick little trip with the Ketogenic Diet.......the weekend get away.
but this one.............
this one was like a trip to Paris. Something we saved up for a long time. I don't know when I'll have to go home, but I want to stay as long as I can. I want to see the whole city, every street every corner. I want to memorize everything so I will never forget...in case we never get back. I need to make one more memory, take one more picture so I can remember it forever.......because eventually..........we must go home.
Slowly but surely the seizures are creeping back every day, but it's these little honeymooms that keep me going. Striving to find a way to hold on to a stable medical place for her. Although....I must admit. In the two weeks of this honeymoom a harsh reality came down on me like a ton of bricks.
Giving all of my time and energy into fighting to get her seizure free has given me little time to think about what will happen when she is.
If she ever is.....
These past two weeks have given me a lot of time to think about just that.
Especially when I came across some preschool projects Christian did when he was four. Then the thought crossed my mind.....what if Ava can never read......
When the seizures are at bay, and you have what you think you want...what has been THE most important priority in your life for years...you are now scrambling to pick up the pieces of what is left of your baby. After this "thing" has taken all of the best parts.
The most precious ones.
The ones I wanted.
The ones that were OURS to enjoy and cherish.
The most important ones she needs to live a normal life.
the Epilepsy stole those away from us.....and I'm just soooo mad, but more than that, I'm heart broken down to the very core of my being.
I feel like I'm morning the loss of all the dreams I had for her.....so I can make a place for new dreams.
And this my friends appears to be much harder that simply fighting seizures. That I know how to do.
So to all my friends in a different place in this journey then us. I understand why you are still struggling emotionally. This is so much more that just getting your child free from Epilepsy. Its picking up the pieces.
Dreaming new dreams.
Letting go.....
Holding on.....
and so much more.
Even though we are far from ever being seizure free.....I'm beginning to realize being seizure free might not be as easy as I thought after all.
Monday, February 15, 2010
Friday, January 15, 2010
A Letter
Dear Dr. Neuro:
I know it seems strange, me writing to you and all, but, well, to be honest, every time we talk there are so many other things going on, it never seems like the right time.
I'm desperate. (Like you don't know this already, but I figured I'd spell it out anyway).
I'm loosing my daughter.
What once was a 3-6 month delay has creeped up to 18-24 months. She can't eat, she can't sleep, and she can't go out anywhere. The seizures are destroying her.
I've noticed that the spark of optimism we used to have for her future has dwindled. I can feel it.
Dr. Neuro, I just want you to know how much we love you for Ava's doctor. You have given me the freedom to be more than just her mother, but a decision maker. You've let me make mistakes, and learn from them.
By putting trust in me, you have helped me to trust myself with her.
You've seen her from an innocent 6 month old baby to a 4 year old girl. I know I can be pushy, and well overly agressive sometimes. I can be difficult, I know.
But, she is my baby.
My daughter.
I'm supposed to protect her from all this. Instead I've had to watch her suffer every day. Go through round after round of tests. ER visits , ICU stays, and almost loose her life.
So the reason I'm writing is to ask a favor of you.
I need you to support me in persuing the best possible evaluation for her. I really want to get this MEG test before we intiate the diet again, while she's seizing at her worst. Which is, well, right now.
I need agressive, cutting edge eyes to look at this test. We are risking her life letting her continue to seize like this. Our past visit to the ICU attests to that. The seizures will kill her before any agressive therapy will.
I know your not crazy about surgery. Especially for her. I know you and the others feel her PET and EEGs are non-impressive as far as her potential for benefiting from surgery is concerned. I also understand surgery is not a be all end all "fix" to our problem.
But just the simple fact alone that she been seizing over 100x per day clinically should be reason alone to push the subject for an indepth evaluation. I don't want to wait for her to be completely disabled for anyone to take a risk with her. We're loosing time....and I'm loosing her.
You owe this to her. A chance to live her best life. You owe this to our family. Most importantly you owe this to yourself, whether it's to prove yourself right, or better yet to give peace to a hurting family trying to save their daughter, sister, neice, and friend.
I know it seems strange, me writing to you and all, but, well, to be honest, every time we talk there are so many other things going on, it never seems like the right time.
I'm desperate. (Like you don't know this already, but I figured I'd spell it out anyway).
I'm loosing my daughter.
What once was a 3-6 month delay has creeped up to 18-24 months. She can't eat, she can't sleep, and she can't go out anywhere. The seizures are destroying her.
I've noticed that the spark of optimism we used to have for her future has dwindled. I can feel it.
Dr. Neuro, I just want you to know how much we love you for Ava's doctor. You have given me the freedom to be more than just her mother, but a decision maker. You've let me make mistakes, and learn from them.
By putting trust in me, you have helped me to trust myself with her.
You've seen her from an innocent 6 month old baby to a 4 year old girl. I know I can be pushy, and well overly agressive sometimes. I can be difficult, I know.
But, she is my baby.
My daughter.
I'm supposed to protect her from all this. Instead I've had to watch her suffer every day. Go through round after round of tests. ER visits , ICU stays, and almost loose her life.
So the reason I'm writing is to ask a favor of you.
I need you to support me in persuing the best possible evaluation for her. I really want to get this MEG test before we intiate the diet again, while she's seizing at her worst. Which is, well, right now.
I need agressive, cutting edge eyes to look at this test. We are risking her life letting her continue to seize like this. Our past visit to the ICU attests to that. The seizures will kill her before any agressive therapy will.
I know your not crazy about surgery. Especially for her. I know you and the others feel her PET and EEGs are non-impressive as far as her potential for benefiting from surgery is concerned. I also understand surgery is not a be all end all "fix" to our problem.
But just the simple fact alone that she been seizing over 100x per day clinically should be reason alone to push the subject for an indepth evaluation. I don't want to wait for her to be completely disabled for anyone to take a risk with her. We're loosing time....and I'm loosing her.
You owe this to her. A chance to live her best life. You owe this to our family. Most importantly you owe this to yourself, whether it's to prove yourself right, or better yet to give peace to a hurting family trying to save their daughter, sister, neice, and friend.
Friday, November 6, 2009
The Longest Update Ever
It's been a long time....what can I say. It seems the magnitude of Ava's condition has finally caught up with me.
Thirty pounds later, and a few more wrinkles, I think I'm finally turning the corner, and ready to blog again. Maybe it all started when I got to thinking....and actually letting the thought stick around for awhile....that MAYBE...she will never be rid of this.
That she is now a solid year behind her peers cognitively, and we seem to be widening the gap instead of closing it.
I actually had to look at that. And worst of all........
feel that.
All I just keep thinking is.... how could she have been born so perfect. Five fingers, five toes....quick labor....easy pregnancy. I want to press the rewind button to the first few weeks when nothing was wrong. To go back to the very first EEG we had at 6 months old when they said "it was normal" and hold on to that....... and press the pause button.
Now....she is CLEARLY different. Not only do we all see it. We feel it. A lot more now than ever before.
It's a hard pill to swallow.
So here's the (entire year) update in a nutshell. Since my last post, January of this year, so much has happened.
Firstly, we weaned off the Ketogenic diet this past April after about a year and a half on the diet. It wasn't even really a planned wean. When the though actually crossed my mind...and I let it say for awhile.
MAYBE............
We'll NEVER be seizure free.
Whew....
I hate even spelling that. Thinking that.....Feeling that.
It's that one thought, that sent me into survival mode. Barely getting by. Waiting for the sun to go down and the day to be over so I could dream.
Because a dream is all I had that made me have that feeling again. That one moment in time when you actually exhale.
And say to youself.............
I only exhale in my dreams.
So back to the Keto wean....the weird part, was that even though she was in 2+ Ketosis, her seizure activity was o.k. Not off the wall, like I would have thought. Like I imagined it would be off the diet. Our miracle that stopped the 60+ drop seizures she was having at only 2 years old. That cut down her life threatning seizures to only 1 a year instead of 1 every 3 weeks.
I think we even lost our "frequent flyer" pass in the Hasbro ER.
The wean didn't exactly go as planned. Ava pretty much had weaned herself off the diet by these daily sneaks I couldn't figure out. Anyway......Dr. Neuro was less than pleased, and had wanted to plan this out. A very careful, slow wean, as to not "rock the boat" so to speak. But in typical Ava fashion it was an abrubt, high drama, tons of withdrawals, then..well. Status Quo.
After a few med adjustments and the seizures were still present....but not absolutely out of control..and for the past few months I've been ok with that.
I want her to eat.
Pop Tarts (her favorite), chips, bread, orange juice....all of the things we take for granted every day were things that were forbidded to her...and she was still having seizures...every day.
I had enough. We all had enough. So if we had to watch her have seizures all day...it mine as well be with a pop tart in her hand!!!
Thirty pounds later, and a few more wrinkles, I think I'm finally turning the corner, and ready to blog again. Maybe it all started when I got to thinking....and actually letting the thought stick around for awhile....that MAYBE...she will never be rid of this.
That she is now a solid year behind her peers cognitively, and we seem to be widening the gap instead of closing it.
I actually had to look at that. And worst of all........
feel that.
All I just keep thinking is.... how could she have been born so perfect. Five fingers, five toes....quick labor....easy pregnancy. I want to press the rewind button to the first few weeks when nothing was wrong. To go back to the very first EEG we had at 6 months old when they said "it was normal" and hold on to that....... and press the pause button.
Now....she is CLEARLY different. Not only do we all see it. We feel it. A lot more now than ever before.
It's a hard pill to swallow.
So here's the (entire year) update in a nutshell. Since my last post, January of this year, so much has happened.
Firstly, we weaned off the Ketogenic diet this past April after about a year and a half on the diet. It wasn't even really a planned wean. When the though actually crossed my mind...and I let it say for awhile.
MAYBE............
We'll NEVER be seizure free.
Whew....
I hate even spelling that. Thinking that.....Feeling that.
It's that one thought, that sent me into survival mode. Barely getting by. Waiting for the sun to go down and the day to be over so I could dream.
Because a dream is all I had that made me have that feeling again. That one moment in time when you actually exhale.
And say to youself.............
I only exhale in my dreams.
So back to the Keto wean....the weird part, was that even though she was in 2+ Ketosis, her seizure activity was o.k. Not off the wall, like I would have thought. Like I imagined it would be off the diet. Our miracle that stopped the 60+ drop seizures she was having at only 2 years old. That cut down her life threatning seizures to only 1 a year instead of 1 every 3 weeks.
I think we even lost our "frequent flyer" pass in the Hasbro ER.
The wean didn't exactly go as planned. Ava pretty much had weaned herself off the diet by these daily sneaks I couldn't figure out. Anyway......Dr. Neuro was less than pleased, and had wanted to plan this out. A very careful, slow wean, as to not "rock the boat" so to speak. But in typical Ava fashion it was an abrubt, high drama, tons of withdrawals, then..well. Status Quo.
After a few med adjustments and the seizures were still present....but not absolutely out of control..and for the past few months I've been ok with that.
I want her to eat.
Pop Tarts (her favorite), chips, bread, orange juice....all of the things we take for granted every day were things that were forbidded to her...and she was still having seizures...every day.
I had enough. We all had enough. So if we had to watch her have seizures all day...it mine as well be with a pop tart in her hand!!!
Monday, May 4, 2009
I Love You Mommy!
I Love You Mommy........
Those 4 word I feared I might never hear. Those 4 words that I thought for sure the epilepsy would most certainly steal from me. My heart can only bring me back to when she was 2 years old....hardly talking....still.....not saying her name, and riddled with seizure after seizure with no light at the end of the tunnel.
Falling...
Crying...
Stitches...
and pain.....
for ALL of us.
It's taken time, a lot of hard work, patience, acceptance, and, well, a lot of extra love...but....she said it. And she says it all the time now...............
I Love You.
Is it totally wierd that regardless of the epilepsy (that we are always struggling to get control of) and all the major set backs we've had. I'm proud. Proud of her...for perservering through days of non-stop seizures, migraines, and yucky ketogenic food.
Proud of my other children...for trying to make this work.........
Sacraficing for her......for our family...........
Proud of my husband for providing for our family during these hard times when her medication cost more than our mortgage......
And maybe it's selfish of me to say...but......... proud of me.
For keeping the faith.
Believeing in her.
Believing in God.
and....well......believing in the referigeratior.
The verse I have taped to it.
"Through faith and patience you will inherit the promise". Hebrews 6:1
Maybe you might ask. What is the "promise" ? Well..that's the whole thing. I've had that verse there for almost 2 years now. Some days the promise was t0 get through the day...and other days it was having the grace to use my last nerve to mediate a fight between the other kids and still keep my cool.
Yet, the big picture always lingers. The "end" result. Will Ava be O.K. Will she grow up to be "normal". Will her body ever live without seizures.
That.....I don't know.
But what I do know is each day I look forward to God's promise for me. I look for his mercy and favor in every step I take. Even on the bad days. I look for his peace. ...which some days...IS my promise.
I'm grossly optimistic..even though my odds aren't with me.
Those 4 word I feared I might never hear. Those 4 words that I thought for sure the epilepsy would most certainly steal from me. My heart can only bring me back to when she was 2 years old....hardly talking....still.....not saying her name, and riddled with seizure after seizure with no light at the end of the tunnel.
Falling...
Crying...
Stitches...
and pain.....
for ALL of us.
It's taken time, a lot of hard work, patience, acceptance, and, well, a lot of extra love...but....she said it. And she says it all the time now...............
I Love You.
Is it totally wierd that regardless of the epilepsy (that we are always struggling to get control of) and all the major set backs we've had. I'm proud. Proud of her...for perservering through days of non-stop seizures, migraines, and yucky ketogenic food.
Proud of my other children...for trying to make this work.........
Sacraficing for her......for our family...........
Proud of my husband for providing for our family during these hard times when her medication cost more than our mortgage......
And maybe it's selfish of me to say...but......... proud of me.
For keeping the faith.
Believeing in her.
Believing in God.
and....well......believing in the referigeratior.
The verse I have taped to it.
"Through faith and patience you will inherit the promise". Hebrews 6:1
Maybe you might ask. What is the "promise" ? Well..that's the whole thing. I've had that verse there for almost 2 years now. Some days the promise was t0 get through the day...and other days it was having the grace to use my last nerve to mediate a fight between the other kids and still keep my cool.
Yet, the big picture always lingers. The "end" result. Will Ava be O.K. Will she grow up to be "normal". Will her body ever live without seizures.
That.....I don't know.
But what I do know is each day I look forward to God's promise for me. I look for his mercy and favor in every step I take. Even on the bad days. I look for his peace. ...which some days...IS my promise.
I'm grossly optimistic..even though my odds aren't with me.
Wednesday, January 28, 2009
Get Ready to Read
I'm so sorry that it's taken me so long to update the blog. It seems since we started the process to transition Ava out of Early Intervention, and into the school system.....things have been....well...crazy busy!!!
First things first. Our baby girl turned 3 years old December 1st. We are really so proud of her, in every way you can imagine.
Secondly, we received the results of Ava's SCN1A genetic testing, a very important piece of information we had been waiting for. Ava's test came back with what they call a "single variant change in the gene". Basically meaning that it's neither a yes she has Dravet's Syndrome (SMEI) or no she does not. This particular change is what the lab likes to call "not proven to cause epilepsy"...but.....clinically she is a tell tale case of some kind of SCN1A type epilepsy in so many ways. We all actually thought is was going to be a definite yes. So, at this stage, because both Neurologists (both Providence and Boston) believe this is quite possibly the reason why Ava is suffering from uncontrolled seizures. We have yet to do a muscle biopsy to rule out any mitochondrial disorder, but, one thing at a time.
Ava has continued on the Ketogenic Diet, although, her seizure control as of lately, has been poor, and the diet is, once again, is in question as far as its efficacy in treating her myoclonic seizures. Additionally, her Triglycerides are over 900, putting her at increased risk of pancreatitis among other things, she has gained virtually no weight, and she has some vitamin deficiencies which are causing concern to both Neuros. We are all concerned, so a lot has been on the table.
Back in November, we trialed Topamax (it just made her waaay to dopey, so we backed off fairly quickly. We did, however, notice that she did very well at a low dose (25mg per day) in combination with the diet. We attribute that that to her being a bit more on the acidotic side.
To make a long story short, after a few days in a row of continued breakthrough seizures while on the low dose of the Topamax (we've continued the Clobazam for a few months right now), we decided to completely wean the Topamax and begin our planned trial of Vigabatrin.
What a DISASTER!!
Not only did she have some major withdrawal seizures from coming off the Topamax...she developed a mystery rash after about 2 1/2 weeks into our Vigabatrin trial, which caused our Neuro to yank her off it immediately. The Vigabatrin, we believe, aggravated her epilepsy. We've never seen an initial reaction so bad with ANY med we've tried!
The months of December and January have been riddled with respiratory illness, after respiratory illness. Ava has been through three antibiotics, and is still very congested. We will be going to the pediatrician tomorrow to have her checked....again. She just does not even look well.
On New Years Eve....December 31st 2008 Ava had her first grand mal seizure in over a year. It took 30mg of Diastat to break it.
We were soooo devastated. All of us.
Truth be told, after I had awhile to think it over, we've been so vigilant treating her this past year during illness or periods of breakthrough seizures with her Valium and Lorazepam that we must have prevented quite a few major seizures....just by being smarter....and better at reading her. Well......at least that's what I've been telling myself to lessen the pain.
Ava officially started school this month, and we're in week three (although today was a snow day for us). She goes to preschool 5 days a week from 8:05 to 10:45. She has a one on one RN with her at all times to make sure she is safe at school. We really couldn't have asked for a better nurse. She has years of PICU experience, and is completely comfortable taking care of Ava. The school really came through for us in this respect (after a lot of hard work on my end upon our entry into the school).
So as it stands now......after consulting with both our local Pedi. Neurologist, and our Boston Neurologist, they both feel it's time to put the diet to the test and begin a taper. This is no easy task. We will lower it approximately a 1/2 a ratio every two weeks. Which, puts us at about 3+months to fully wean the diet...if that's what we so choose to do. We've all decided that if, at any time during this wean, she begins having falls again, or, her seizure activity is clearly worsening, we will bump the ratio back up...and...essentially...stay on the diet and try to work on the problems we are encountering with her triglycerides, weight gain etc.
We have also re-introduced her Topamax, in hopes we will see some significant change seizure wise. So far, we have seen a minor reduction, but nothing significant.
As it stands right now, we will wait until her respiratory illness clears up, begin the taper of the diet, and, well, just see how it goes. We have no idea how this will turn out, but we just NEED to know if all this work, and suffering (on Ava's part) is worth it. We need to know if it's still helping, or even making a difference.
First things first. Our baby girl turned 3 years old December 1st. We are really so proud of her, in every way you can imagine.
Secondly, we received the results of Ava's SCN1A genetic testing, a very important piece of information we had been waiting for. Ava's test came back with what they call a "single variant change in the gene". Basically meaning that it's neither a yes she has Dravet's Syndrome (SMEI) or no she does not. This particular change is what the lab likes to call "not proven to cause epilepsy"...but.....clinically she is a tell tale case of some kind of SCN1A type epilepsy in so many ways. We all actually thought is was going to be a definite yes. So, at this stage, because both Neurologists (both Providence and Boston) believe this is quite possibly the reason why Ava is suffering from uncontrolled seizures. We have yet to do a muscle biopsy to rule out any mitochondrial disorder, but, one thing at a time.
Ava has continued on the Ketogenic Diet, although, her seizure control as of lately, has been poor, and the diet is, once again, is in question as far as its efficacy in treating her myoclonic seizures. Additionally, her Triglycerides are over 900, putting her at increased risk of pancreatitis among other things, she has gained virtually no weight, and she has some vitamin deficiencies which are causing concern to both Neuros. We are all concerned, so a lot has been on the table.
Back in November, we trialed Topamax (it just made her waaay to dopey, so we backed off fairly quickly. We did, however, notice that she did very well at a low dose (25mg per day) in combination with the diet. We attribute that that to her being a bit more on the acidotic side.
To make a long story short, after a few days in a row of continued breakthrough seizures while on the low dose of the Topamax (we've continued the Clobazam for a few months right now), we decided to completely wean the Topamax and begin our planned trial of Vigabatrin.
What a DISASTER!!
Not only did she have some major withdrawal seizures from coming off the Topamax...she developed a mystery rash after about 2 1/2 weeks into our Vigabatrin trial, which caused our Neuro to yank her off it immediately. The Vigabatrin, we believe, aggravated her epilepsy. We've never seen an initial reaction so bad with ANY med we've tried!
The months of December and January have been riddled with respiratory illness, after respiratory illness. Ava has been through three antibiotics, and is still very congested. We will be going to the pediatrician tomorrow to have her checked....again. She just does not even look well.
On New Years Eve....December 31st 2008 Ava had her first grand mal seizure in over a year. It took 30mg of Diastat to break it.
We were soooo devastated. All of us.
Truth be told, after I had awhile to think it over, we've been so vigilant treating her this past year during illness or periods of breakthrough seizures with her Valium and Lorazepam that we must have prevented quite a few major seizures....just by being smarter....and better at reading her. Well......at least that's what I've been telling myself to lessen the pain.
Ava officially started school this month, and we're in week three (although today was a snow day for us). She goes to preschool 5 days a week from 8:05 to 10:45. She has a one on one RN with her at all times to make sure she is safe at school. We really couldn't have asked for a better nurse. She has years of PICU experience, and is completely comfortable taking care of Ava. The school really came through for us in this respect (after a lot of hard work on my end upon our entry into the school).
So as it stands now......after consulting with both our local Pedi. Neurologist, and our Boston Neurologist, they both feel it's time to put the diet to the test and begin a taper. This is no easy task. We will lower it approximately a 1/2 a ratio every two weeks. Which, puts us at about 3+months to fully wean the diet...if that's what we so choose to do. We've all decided that if, at any time during this wean, she begins having falls again, or, her seizure activity is clearly worsening, we will bump the ratio back up...and...essentially...stay on the diet and try to work on the problems we are encountering with her triglycerides, weight gain etc.
We have also re-introduced her Topamax, in hopes we will see some significant change seizure wise. So far, we have seen a minor reduction, but nothing significant.
As it stands right now, we will wait until her respiratory illness clears up, begin the taper of the diet, and, well, just see how it goes. We have no idea how this will turn out, but we just NEED to know if all this work, and suffering (on Ava's part) is worth it. We need to know if it's still helping, or even making a difference.
Monday, September 29, 2008
Round 1
Today was our "Eligibility Meeting" with the School Department. I've been stressing about our transition out of Early Intervention (where Ava gets her Speech, Physical, and Occupational Therapy) into the school system for months.
My Early Intervention coordinator told me she's never seen ANY mother so prepared. Excuse me as a pat myself on the back.....
:kidding:
I was ready with my arsenal of letters....for ALL her doctors stating why she needs a one on one nurse at all times while at school. I had hand outs on every type of seizure she has, the effect of recurrent epileptic seizures on the brain, web links to video clips of some of Ava's seizure types, and a complete two page list of every single time she's ever been to the hospital. Her complete neuro psych report, letters from the neuro to pedi, a representative from our local epilepsy center, one from our local special education advisory committee, and an advocate from RIPN (Rhode Island Parents Network). All people who spoke up during the meeting, asked questions I missed, and "had my back" at every corner.
I thought I was going to have to give the poor school nurse a brown bag to breath in after we gone done going through some of Ava's recent seizure scenarios.
As it turns out the school had been doing some preparations of their own in anticipation of Ava entering the school to receive special education services. To my surprise (and relief), the head of special education has had every intention of approaching the Superintendent to get Ava her one on one nurse.
My arsenal........was not needed after all.
Actually all the therapists, and the preschool teacher(s) were extremely appreciative to receive all the information about Ava's seizures, and seizure types. I also prepared a hand out for them detailing Ava's strengths, weaknesses, and how she learns best to allow them to get to know her a bit before she arrives. They felt much more at ease feeling educated about what they were dealing with. It felt good.
Even better.....I actually LIKE all the therapists.
Today was a good day.
On top of it all, I FINALLY got approval from my insurance company for our referral to Boston Children's to see the neuro and dietitian. Dr. Neuro called today to review the results of Ava's digitrace EEG. Same old story....Generalized spike and slow wave discharges.............
with an "mentionable" number originating in the left occipital region
Is it actually normal that I was excited? Excited about the fact that FINALLY she might be showing us a focal point? I'm actually hopeful that my daughter might be a candidate for brain surgery.
Lastly, we discussed how things have been lately, and what we're going to do about it. Our seizure control has been so poor as of late, and her myoclonics have begun to cluster regularly, to where she needs her "rescue med" (diastat) to break them. This is new for us. She also had a weird tonic seizure recently, and a month back had another unusual clonic seizure which we had to break with Diastat.
Dr. Neuro wants to wean Clobazam, and start Zonegran. He also wants us to STAY on the diet.
He's approached me about Zonegran numerous times. I just don't want to compromise her cognition or language skills (a side effect of Zonegran). But, at this point, her seizures are compromising them, so it's a catch 22. Zonegran and the Ketogenic Diet aren't exactly friends. She'd be at an extremely high risk for kidney stones, among other things.
Tonight I feel good that I was a voice for Ava today, who's speech they deem "unintelligable" .
My Early Intervention coordinator told me she's never seen ANY mother so prepared. Excuse me as a pat myself on the back.....
:kidding:
I was ready with my arsenal of letters....for ALL her doctors stating why she needs a one on one nurse at all times while at school. I had hand outs on every type of seizure she has, the effect of recurrent epileptic seizures on the brain, web links to video clips of some of Ava's seizure types, and a complete two page list of every single time she's ever been to the hospital. Her complete neuro psych report, letters from the neuro to pedi, a representative from our local epilepsy center, one from our local special education advisory committee, and an advocate from RIPN (Rhode Island Parents Network). All people who spoke up during the meeting, asked questions I missed, and "had my back" at every corner.
I thought I was going to have to give the poor school nurse a brown bag to breath in after we gone done going through some of Ava's recent seizure scenarios.
As it turns out the school had been doing some preparations of their own in anticipation of Ava entering the school to receive special education services. To my surprise (and relief), the head of special education has had every intention of approaching the Superintendent to get Ava her one on one nurse.
My arsenal........was not needed after all.
Actually all the therapists, and the preschool teacher(s) were extremely appreciative to receive all the information about Ava's seizures, and seizure types. I also prepared a hand out for them detailing Ava's strengths, weaknesses, and how she learns best to allow them to get to know her a bit before she arrives. They felt much more at ease feeling educated about what they were dealing with. It felt good.
Even better.....I actually LIKE all the therapists.
Today was a good day.
On top of it all, I FINALLY got approval from my insurance company for our referral to Boston Children's to see the neuro and dietitian. Dr. Neuro called today to review the results of Ava's digitrace EEG. Same old story....Generalized spike and slow wave discharges.............
with an "mentionable" number originating in the left occipital region
Is it actually normal that I was excited? Excited about the fact that FINALLY she might be showing us a focal point? I'm actually hopeful that my daughter might be a candidate for brain surgery.
Lastly, we discussed how things have been lately, and what we're going to do about it. Our seizure control has been so poor as of late, and her myoclonics have begun to cluster regularly, to where she needs her "rescue med" (diastat) to break them. This is new for us. She also had a weird tonic seizure recently, and a month back had another unusual clonic seizure which we had to break with Diastat.
Dr. Neuro wants to wean Clobazam, and start Zonegran. He also wants us to STAY on the diet.
He's approached me about Zonegran numerous times. I just don't want to compromise her cognition or language skills (a side effect of Zonegran). But, at this point, her seizures are compromising them, so it's a catch 22. Zonegran and the Ketogenic Diet aren't exactly friends. She'd be at an extremely high risk for kidney stones, among other things.
Tonight I feel good that I was a voice for Ava today, who's speech they deem "unintelligable" .
Tuesday, September 23, 2008
I love this kid
I clicked on my blog link this morning, and this picture of Ava (goofing off during a wedding) popped up....and made me laugh! Especially considering what I'm about to post. Even Madison and Christian can't help but laugh at her sometimes, because she really is, such a tool!
Currently she's obsessed with the word "shut up". Mind you, she refuses to say her name. She refers to herself as "ME". Everyone in the family knows where she learned the dreaded phrase......listening to her beloved brother and sister in the car! Now, she blurts it out to ANYONE who is making eye contact with her! For instance, we were out to dinner Sunday night and a nice, sweet old gentlemen came up to our car (I was pulled around front to pick up the others) and stuck his head in the window to talk to Ava. Before the old feller could even get a word out Ava screams "SHUT UP, SHUT UP, SHUT UP". Now, mind you, sometimes I can get away with certain things because her language isn't always crystal clear....but....this time...there was no mistake.
If I could have crouched underneath the steering wheel, I would have! Of course, I apologized up and down, and thank God, he didn't seem offended. I'm sure her Digitrace EEG, wires coming out her head look helped with the sympathy vote.
So we've all decided to just ignore her when she says "the word". Anytime we've tried to correct her, she says it even more, even louder, and pretty much....all day!
So if any of you are in Rhode Island, walking to your car, or in the grocery store, reading off your list or talking to a friend, and you hear my little angels voice in your ear.....telling you to "shut up" just keep on walkin' *LOL*.
Don't take it personally, I give it another 2 weeks and it will be history!
Currently she's obsessed with the word "shut up". Mind you, she refuses to say her name. She refers to herself as "ME". Everyone in the family knows where she learned the dreaded phrase......listening to her beloved brother and sister in the car! Now, she blurts it out to ANYONE who is making eye contact with her! For instance, we were out to dinner Sunday night and a nice, sweet old gentlemen came up to our car (I was pulled around front to pick up the others) and stuck his head in the window to talk to Ava. Before the old feller could even get a word out Ava screams "SHUT UP, SHUT UP, SHUT UP". Now, mind you, sometimes I can get away with certain things because her language isn't always crystal clear....but....this time...there was no mistake.
If I could have crouched underneath the steering wheel, I would have! Of course, I apologized up and down, and thank God, he didn't seem offended. I'm sure her Digitrace EEG, wires coming out her head look helped with the sympathy vote.
So we've all decided to just ignore her when she says "the word". Anytime we've tried to correct her, she says it even more, even louder, and pretty much....all day!
So if any of you are in Rhode Island, walking to your car, or in the grocery store, reading off your list or talking to a friend, and you hear my little angels voice in your ear.....telling you to "shut up" just keep on walkin' *LOL*.
Don't take it personally, I give it another 2 weeks and it will be history!
Thursday, September 18, 2008
Three
I can't Believe I'm participating in this!!!! But I've been Tagged...so for the sake of good sportsmanship, here it goes:)
Three Joys
my faith - without this....I would be nothing.
laughter - laughing has always been such a big part of my life....thanks to my mother. I LOVE practical jokes and am a total prankster (when I have time). I have a quirky sense of humor, and I'm KNOWN for laughing at inappropriate times (yes...I'm a am a former childhood church laugher). In fact, NOBODY ever wants to sit next to me at church to this day, because THEY start laughing...when I'm being totally serious (especially these days *LOL*).
my family - I really just love down time with my family, especially the kids. Those random days where we're all hanging out or playing, are totally priceless. It's just....what life's all about. What did I ever do that was important before I had children!! I also look forward to those lazy days with the cousins and parents just laughing and chilling out.
Making Memories................
Three Fears
Absolutely, hands down, number one fear
Not fulfilling my purpose in this life
**no explanation necessary**
failure - of any kind. This fear has held me back from many, many missed opportunities, but taught me some invaluable lessons in life.
making mistakes as a mother - the most important thing I've ever done with my life is creating (with some help...) three lives. Three unique, beautiful human beings. I know I can never be perfect, and mistakes will be made.....but I want all my children to be genuinely good, caring, intelligent, successful human beings. I want them to grow up feeling loved and safe, treated equally, and fully equipped with all the tools they will ever need to make a valuable contribution to this world.
Three Obsessions
Coffee...Coffee...Coffee.... I've tried to give it up three times...
a really good glass of red wine! .....nothing else needs to be said!
Three Joys
my faith - without this....I would be nothing.
laughter - laughing has always been such a big part of my life....thanks to my mother. I LOVE practical jokes and am a total prankster (when I have time). I have a quirky sense of humor, and I'm KNOWN for laughing at inappropriate times (yes...I'm a am a former childhood church laugher). In fact, NOBODY ever wants to sit next to me at church to this day, because THEY start laughing...when I'm being totally serious (especially these days *LOL*).
my family - I really just love down time with my family, especially the kids. Those random days where we're all hanging out or playing, are totally priceless. It's just....what life's all about. What did I ever do that was important before I had children!! I also look forward to those lazy days with the cousins and parents just laughing and chilling out.
Making Memories................
Three Fears
Absolutely, hands down, number one fear
Not fulfilling my purpose in this life
**no explanation necessary**
failure - of any kind. This fear has held me back from many, many missed opportunities, but taught me some invaluable lessons in life.
making mistakes as a mother - the most important thing I've ever done with my life is creating (with some help...) three lives. Three unique, beautiful human beings. I know I can never be perfect, and mistakes will be made.....but I want all my children to be genuinely good, caring, intelligent, successful human beings. I want them to grow up feeling loved and safe, treated equally, and fully equipped with all the tools they will ever need to make a valuable contribution to this world.
Three Obsessions
Coffee...Coffee...Coffee.... I've tried to give it up three times...
a really good glass of red wine! .....nothing else needs to be said!
keeping it real - anyone who knows me knows this already. I'm a stickler on this subject. I absolutely cringe around people who constantly put up a front. I'm as real as they come.
Three Interesting Facts
I have a motorcycle and LOVE to ride (especially with the kids).
I'm terrified of horror movies, and can't REMEMBER the last time I watched one. (I want to say high school!)
I 've been to Africa...three times!
Tuesday, September 16, 2008
Words of Wisdom
This one experience I had this past February keeps resonating in my mind......and has been for months. It comes to my mind most often when I'm going through a hard time. Whether it be Ava struggling physically, or me struggling emotionally to wrap my heart and mind around what has....and is.....happening to every person in this family because of Ava's disability. When I'm struggling to try and accept what her future may.....or may not hold.
When I'm feeling sorry for myself..........because NOBODY could possibly understand what we go through. The sleepless nights, the YEARS of no sleep.
The crying.
in my car.......on the phone to my husband......and as I lay down to sleep......with my 2 year old next to me because she can't sleep alone......because she might die in her sleep.....from a prolonged seizure.
The guilt....that I'm not doing enough.....that I haven't done EVERYTHING THAT COULD POSSIBLY BE DONE for my daughter, to help her live a normal life. That I'm not smart enough to understand all the in depth medical terminology tossed around me on a daily basis.
God....why couldn't you have picked a Harvard Grad. to take on this job *LOL*
Nobody mentions.......the guilt.
So I've gotten totally off track from the story I wanted to tell so here it goes:)
: and how cool would it be if the people involved in this story actually read this and freak out thinking how such a thoughtless statement.....affected someone else right down to their core:
When Ava was in the Pediatric Intensive Care Unit this past February with Flu/Pneumonia (caused by aspirating due to a 45 minute status seizure), then a case of life threatning sepsis, we ran into another family in the ICU lounge. Their son was in critical condition after suffering a bowel obstruction, and emergency surgery. Their son had Cystic Fibrosis.
We had seen each other for over two weeks...here and there....and we shared bits of information with one another while we were passing through. On our last day in PICU, after 21 days in Intensive Care, I ran into them that morning.
We exchanged e-mails (of course, I lost the teeny, tiny, piece of paper I shoved in my bag) so I was never able to contact them, although maybe they still have my e-mail:) We got to talking about friends and family, and I said "I struggle so much because nobody in my life REALLY understands what we are going through, and how hard this is....day in and day out".
He turned to me and said....so simply "I would never want any of my friends or family to ever understand what this life is like. I would never wish them to even live one day like this."
It just hit me like a brick.
This man, as his son was fighting for his life, still, never coveted the one thing I can never get off my mind. The reason I'd just rather walk around angry and bitter, because nobody understands. Whatever they say, do, or don't do (my major complaint) is just always wrong. All wrong.
So when I get in this mode, my heart takes me back to the PICU lounge. Over, and over again. Until one day..I'll finally just get it.
It will be one of those moments that I get an overwhelming peace, and know in my heart.....I can just let this go.
When I'm feeling sorry for myself..........because NOBODY could possibly understand what we go through. The sleepless nights, the YEARS of no sleep.
The crying.
in my car.......on the phone to my husband......and as I lay down to sleep......with my 2 year old next to me because she can't sleep alone......because she might die in her sleep.....from a prolonged seizure.
The guilt....that I'm not doing enough.....that I haven't done EVERYTHING THAT COULD POSSIBLY BE DONE for my daughter, to help her live a normal life. That I'm not smart enough to understand all the in depth medical terminology tossed around me on a daily basis.
God....why couldn't you have picked a Harvard Grad. to take on this job *LOL*
Nobody mentions.......the guilt.
So I've gotten totally off track from the story I wanted to tell so here it goes:)
: and how cool would it be if the people involved in this story actually read this and freak out thinking how such a thoughtless statement.....affected someone else right down to their core:
When Ava was in the Pediatric Intensive Care Unit this past February with Flu/Pneumonia (caused by aspirating due to a 45 minute status seizure), then a case of life threatning sepsis, we ran into another family in the ICU lounge. Their son was in critical condition after suffering a bowel obstruction, and emergency surgery. Their son had Cystic Fibrosis.
We had seen each other for over two weeks...here and there....and we shared bits of information with one another while we were passing through. On our last day in PICU, after 21 days in Intensive Care, I ran into them that morning.
We exchanged e-mails (of course, I lost the teeny, tiny, piece of paper I shoved in my bag) so I was never able to contact them, although maybe they still have my e-mail:) We got to talking about friends and family, and I said "I struggle so much because nobody in my life REALLY understands what we are going through, and how hard this is....day in and day out".
He turned to me and said....so simply "I would never want any of my friends or family to ever understand what this life is like. I would never wish them to even live one day like this."
It just hit me like a brick.
This man, as his son was fighting for his life, still, never coveted the one thing I can never get off my mind. The reason I'd just rather walk around angry and bitter, because nobody understands. Whatever they say, do, or don't do (my major complaint) is just always wrong. All wrong.
So when I get in this mode, my heart takes me back to the PICU lounge. Over, and over again. Until one day..I'll finally just get it.
It will be one of those moments that I get an overwhelming peace, and know in my heart.....I can just let this go.
Monday, September 15, 2008
By the way......how is Ava doing???
You don't know how many times I hear that question. From acquaintances, friends, even people that don't even know us very well. I wonder at times if anyone REALLY wants to know the answer.
Both Matt and I have found that many who ask.......don't really want to hear the answer if it's anything other than "great, wonderful, better than EVER"
So warning to all....if your one of those people......... don't read any further. This won't be an easy read & won't have you feeling all warm and fuzzy at the end.
People just ask to be nice, as a polite gesture.....and I get that.....I'm guilty of it myself in my "before it happened to me" days. But quite honestly, these days, it really gets the best of me. Don't ask if you don't want to hear the truth. And when I tell you exactly how she is doing....don't cut me off, pretend you have a phone call, or say "awwwww...that's too bad" & go back to living your perfect life and never give us a thought or a prayer. Just don't ask.
Maybe I shouldn't be posting tonight............................
Ava has been having clusters of "new" seizures lately which consist of her eyes deviating upward and blinking constantly. We've had to use her rescue med (Diastat) many times these past few weeks to break these clusters. Strange enough, the myoclonics we've tried so hard to nix, have all but gone (maybe 3 or so a day) We've also noticed some absence seizures rearing. It seems as though ALL her major seizure activity has shifted to sleep time. She's been having horrible myoclonic clusters almost every night. I upped her nighttime Clobazam dose hoping it would help, but nothing.
We've had to rouse her nightly to either give her Diazapam or Lorazepam to take the edge off & help her sleep.
My poor baby. She can't even sleep anymore. The diet, however, is in question.
Again.
It will all come to our 3 day digitrace EEG we will be getting done this Thursday. I'll have a lot to think about next week. So until next week, we'll sit tight. My heart is so heavy tonight. I'm very physically exhausted from the nighttime seizures, but mostly, I'm scared.
Scared of what the EEG might say. Things have shifted seizure wise, and I don't like the way things are going. I'm scared of what is going on inside her brain, and that it could mean Ava may loose all the progress she's made. Yet, even with what I'm seeing on the outside.
I still believe.
I believe that God is in control of this situation. I believe that I can give all this pain, heartache and worry and he will turn it into peace beyond understanding. I believe that one day we will overcome this monster that has stolen our happiness, our sleep, and our precious family time that is all but a distant memory sometimes.
So to those of you who do care, and pray...for real.
We need it. Especially this week and next.
Both Matt and I have found that many who ask.......don't really want to hear the answer if it's anything other than "great, wonderful, better than EVER"
So warning to all....if your one of those people......... don't read any further. This won't be an easy read & won't have you feeling all warm and fuzzy at the end.
People just ask to be nice, as a polite gesture.....and I get that.....I'm guilty of it myself in my "before it happened to me" days. But quite honestly, these days, it really gets the best of me. Don't ask if you don't want to hear the truth. And when I tell you exactly how she is doing....don't cut me off, pretend you have a phone call, or say "awwwww...that's too bad" & go back to living your perfect life and never give us a thought or a prayer. Just don't ask.
Maybe I shouldn't be posting tonight............................
Ava has been having clusters of "new" seizures lately which consist of her eyes deviating upward and blinking constantly. We've had to use her rescue med (Diastat) many times these past few weeks to break these clusters. Strange enough, the myoclonics we've tried so hard to nix, have all but gone (maybe 3 or so a day) We've also noticed some absence seizures rearing. It seems as though ALL her major seizure activity has shifted to sleep time. She's been having horrible myoclonic clusters almost every night. I upped her nighttime Clobazam dose hoping it would help, but nothing.
We've had to rouse her nightly to either give her Diazapam or Lorazepam to take the edge off & help her sleep.
My poor baby. She can't even sleep anymore. The diet, however, is in question.
Again.
It will all come to our 3 day digitrace EEG we will be getting done this Thursday. I'll have a lot to think about next week. So until next week, we'll sit tight. My heart is so heavy tonight. I'm very physically exhausted from the nighttime seizures, but mostly, I'm scared.
Scared of what the EEG might say. Things have shifted seizure wise, and I don't like the way things are going. I'm scared of what is going on inside her brain, and that it could mean Ava may loose all the progress she's made. Yet, even with what I'm seeing on the outside.
I still believe.
I believe that God is in control of this situation. I believe that I can give all this pain, heartache and worry and he will turn it into peace beyond understanding. I believe that one day we will overcome this monster that has stolen our happiness, our sleep, and our precious family time that is all but a distant memory sometimes.
So to those of you who do care, and pray...for real.
We need it. Especially this week and next.
Saturday, August 2, 2008
As Good As It Gets????
Sooooooo....I've been totally slacking with this blog. I can't believe it's been over a month since I've updated. There is so much to tell I don't even know where to start. This is going to be a long one.
Ironic as it is, Ava's been doing wonderfully since a few days before our consultation at Mass General. Go Figure. So, that's about 2 months or so. She's been averaging about 10-20 myoclonics per day, with maybe one or two causing a fall. She's been feeling good, and her speech is continuing to get better every day. Her physical therapist is highly impressed with the progress she's made, and she's almost "up to snuff" with her peers. Our speech is still quite behind.
She really is such a tool!!! Her new obsession is carrying around pocketbooks all day (and night) long. We've all learned to stop searching the house & car for our lost possessions....because their usually....in her purse(s)!
July consisted of : A 24hr EEG study, a complete eye examination, bloodwork for her Genetic Test (SCN1A mutation). lots and lots of meetings with CEDARR, vaccination talk, and lets not forget the phone calls......tons...and tons....of phone calls. We completed our process with the CEDARR program (to help us with Ava's transition out of Early Intervention, and also to get her some respite care, so I can safely leave her with someone that's not US!!). We set up an appointment for a Neuro Psych. evaluation. We had Dr. Neuro write letters, letters, and more letters about why Ava needs a nurse on staff at school whenever she will be there, (and also authorizing her astronomical dose of diastat - rectal Valium (about 3x her normal dose) to break a status epilepcitus episode.
This month, I've clocked in quite a bit of time with phone conversations with our Neuro. About the EEG.......about vaccinations......and most importantly, about.........Is this as good as it gets????
I've actually been feeling great about Ava. She's happy, feeling well physically, and coming along so nicely in every area......but she's still having up to 20 seizures a day with numerous other generalized spikes that we don't see. Dr. Neuro says her seizures are only 1/2 a second long...which wouldn't even add up to 20 seconds per day. But in my mind, a seizures, is a seizure, is a seizure. And none of them are good. Especially for Ava's little brain trying to process information.
The pedi opthomoligist noted a distinct eye droop on the left side. This is something I've insisted on for 2 years. I've brought it up to EVERY neuro we've ever seen......with just the poo poo response of......oh...let me write that down.
Well, write this downs boys....IT IS REAL! Dr. Neuro, upon a quick initial report of the study managed to "slip" and say he saw more on the left side (which may explain the left eye droop she's had for 2 years, and her favoring her right side slightly) but after a full review of the study, he still insists her seizures start equally from both sides and generalize. He's maintained they are coming from deep within the thalamus, although he did say some were originating in the occipital area. Still, the same end result I've heard from every neuro "GENERALIZED EPILEPSY". I'm more confused then ever, and am waiting for the written report to understand it better. Our phone conversation was so loooong and we were dealing with soooo many issues (vaccines in particular), that I'm not sure I ended the call fully understanding exactly what he was saying about the EEG.
Although I did understand one thing.......
Crystal Clear..........
It looks better.........
A LOT better...........
"We're heading in the right direction"............
After all the crying, fighting, stressing, and EVERY twist and turns we've been on with this diet......we're all pleased at how well she's doing despite the few seizures a day we're still seeing.
Although, I'd like to being seeing NONE.
The clobazam has helped her soo much and we're only at 15mg. per day.....(Dr. T says she could go up to as much as 40) and for right now...it's enough. The only side effect we've seen is a bit of sleeplessness, but that's IT. Clobazam is on the list of one of my "good" AED's. Along with Keppra, which gave us 3 SF months around her 1st birthday.
I'm pushing for the 3T MRI. I just NEED it. It will close the door, and put my "left eye" suspicions to rest. Dr. Neuro said if the SCN1A test comes back negative.....he'll set it up. He even said he'll give me a BEAM study, yet he keeps insisting he feels her "answer" will turn up either genetic or some metabolic issue we'll never be able to solve. All 3 neuro's I've consulted have insisted a PET would not yield us any useful information for Ava. But I'm now at the phase that I just need to know, so I can move forward.
As weird as this sounds.......I've always been soooo grateful that, given her initial diagnosis of IS (Infantile Spasms), she is walking, somewhat talking, and happy for the most part.
I thank God every day for pouring his mercy upon our daughter. Most people might wake up in the morning angry, and bitter being dealt a "bad hand", but even as I'm making all her messy Keto meals (while we're still seeing seizures daily), and chasing her around for meds.....I'm grateful.....so very grateful for what we DO have, instead of dwelling on what we don't, or.....may never have. I've moved on from that place, and I hope I've finally come over the hump.
So somewhere in the middle of all this mayhem we managed to escape away with Madison and Christian (and 2 other friends) to Water Country for the day....thanks to Auntie Beth & Uncle Julio. Well I'll admit that it wasn't my first choice of an outing, but it still felt good....having a break from thinking!!!!
Ironic as it is, Ava's been doing wonderfully since a few days before our consultation at Mass General. Go Figure. So, that's about 2 months or so. She's been averaging about 10-20 myoclonics per day, with maybe one or two causing a fall. She's been feeling good, and her speech is continuing to get better every day. Her physical therapist is highly impressed with the progress she's made, and she's almost "up to snuff" with her peers. Our speech is still quite behind.
She really is such a tool!!! Her new obsession is carrying around pocketbooks all day (and night) long. We've all learned to stop searching the house & car for our lost possessions....because their usually....in her purse(s)!
July consisted of : A 24hr EEG study, a complete eye examination, bloodwork for her Genetic Test (SCN1A mutation). lots and lots of meetings with CEDARR, vaccination talk, and lets not forget the phone calls......tons...and tons....of phone calls. We completed our process with the CEDARR program (to help us with Ava's transition out of Early Intervention, and also to get her some respite care, so I can safely leave her with someone that's not US!!). We set up an appointment for a Neuro Psych. evaluation. We had Dr. Neuro write letters, letters, and more letters about why Ava needs a nurse on staff at school whenever she will be there, (and also authorizing her astronomical dose of diastat - rectal Valium (about 3x her normal dose) to break a status epilepcitus episode.
This month, I've clocked in quite a bit of time with phone conversations with our Neuro. About the EEG.......about vaccinations......and most importantly, about.........Is this as good as it gets????
I've actually been feeling great about Ava. She's happy, feeling well physically, and coming along so nicely in every area......but she's still having up to 20 seizures a day with numerous other generalized spikes that we don't see. Dr. Neuro says her seizures are only 1/2 a second long...which wouldn't even add up to 20 seconds per day. But in my mind, a seizures, is a seizure, is a seizure. And none of them are good. Especially for Ava's little brain trying to process information.
The pedi opthomoligist noted a distinct eye droop on the left side. This is something I've insisted on for 2 years. I've brought it up to EVERY neuro we've ever seen......with just the poo poo response of......oh...let me write that down.
Well, write this downs boys....IT IS REAL! Dr. Neuro, upon a quick initial report of the study managed to "slip" and say he saw more on the left side (which may explain the left eye droop she's had for 2 years, and her favoring her right side slightly) but after a full review of the study, he still insists her seizures start equally from both sides and generalize. He's maintained they are coming from deep within the thalamus, although he did say some were originating in the occipital area. Still, the same end result I've heard from every neuro "GENERALIZED EPILEPSY". I'm more confused then ever, and am waiting for the written report to understand it better. Our phone conversation was so loooong and we were dealing with soooo many issues (vaccines in particular), that I'm not sure I ended the call fully understanding exactly what he was saying about the EEG.
Although I did understand one thing.......
Crystal Clear..........
It looks better.........
A LOT better...........
"We're heading in the right direction"............
After all the crying, fighting, stressing, and EVERY twist and turns we've been on with this diet......we're all pleased at how well she's doing despite the few seizures a day we're still seeing.
Although, I'd like to being seeing NONE.
The clobazam has helped her soo much and we're only at 15mg. per day.....(Dr. T says she could go up to as much as 40) and for right now...it's enough. The only side effect we've seen is a bit of sleeplessness, but that's IT. Clobazam is on the list of one of my "good" AED's. Along with Keppra, which gave us 3 SF months around her 1st birthday.
I'm pushing for the 3T MRI. I just NEED it. It will close the door, and put my "left eye" suspicions to rest. Dr. Neuro said if the SCN1A test comes back negative.....he'll set it up. He even said he'll give me a BEAM study, yet he keeps insisting he feels her "answer" will turn up either genetic or some metabolic issue we'll never be able to solve. All 3 neuro's I've consulted have insisted a PET would not yield us any useful information for Ava. But I'm now at the phase that I just need to know, so I can move forward.
As weird as this sounds.......I've always been soooo grateful that, given her initial diagnosis of IS (Infantile Spasms), she is walking, somewhat talking, and happy for the most part.
I thank God every day for pouring his mercy upon our daughter. Most people might wake up in the morning angry, and bitter being dealt a "bad hand", but even as I'm making all her messy Keto meals (while we're still seeing seizures daily), and chasing her around for meds.....I'm grateful.....so very grateful for what we DO have, instead of dwelling on what we don't, or.....may never have. I've moved on from that place, and I hope I've finally come over the hump.
So somewhere in the middle of all this mayhem we managed to escape away with Madison and Christian (and 2 other friends) to Water Country for the day....thanks to Auntie Beth & Uncle Julio. Well I'll admit that it wasn't my first choice of an outing, but it still felt good....having a break from thinking!!!!
Friday, June 20, 2008
The Cancellation List
Soooo...we've been on "the cancellation list" for a consulation with Dr. Thiele and the nutritionist at the at Massachusetts General Hospital. We are approaching month 6 on the Ketogenic Diet, and our seizure control has slipped out of our hands,.
Before totally giving up on all the diet did for us, we just didn't feel right about taking Ava off it until we had a second set of eyes look at her to see if any changes could be made to help us regain the control we saw in the beginning. It appeared, last week, that "the cancellation list" really translates to the "never going to call you...ever...list"! We were NOT expecting anything to come of our MassGeneral hopes, and we were patiently waiting for our July 29th appointment with Dr. Bergin at Boston Children's Hospital.
Surprisingly we got a call 4:59 Friday afternoon to see if we could make it in Monday. Of course, we jumped at the opportunity. Both Matt and I really liked Dr. Thiele, and their super cool waiting room & blood lab in the next room! We talked a lot about meds, not giving up on the diet, and....the VNS.....gulp.
I had been pondering the possibility of the VNS for a few weeks now. My thoughts were.....why waste a year or longer on drug trials that most likely won't work and dope her up and hamper her ability to think and learn. All though both neuros understand our thinking.....they (our local one and Dr. T) both feel it wouldn't provide the control we are looking for, and think with some adjustments to the diet and playing with the meds, we can be in a better place.
I'm willing to give it a try. I'm still waiting for the nutritionist to give me her recommendations, and see how I can make it work. We're raising her Clobazam a bit, which I'm not too keen on (as it makes her VERY hyper). So that puts us at 20mg per day...it seems like a lot. But it IS helping.
I also found out yesterday that we FINALLY got our insurance approval to get our SCN1A genetic testing. What a long wait! We waited almost 4 weeks for our insurance company to decide whether or not it would be "worth it" for her to get the test done. It really blows me away sometimes. Ava has been suffering having seizures for over 2 years, with no cause determined, what is there to decide on???
So, since it's been so long since I've posted I'll fill everyone in on some family news (yes...there are actually other people in our family other than AVA *LOL*) Christian finished his baseball season with a great last game, and not after puking a few times afterwards because of the heat **that's my boy**! Both kids had end of the year performances at their school, and we are sooo proud of how well both of them did this year in school (despite all our drama around here sometimes).
They found an injured bird in the yard yesterday, and drove me nuts for hours. So, yes, I'll admit that I did put a make shift splint on it's leg (hoping it would fly, fly, away so my 3 kids would STOP touching it) to no avail. So after lots of tears, our neighbor made a little house for it to spend it's last hours in.
Is it wrong that I'm laughing about this right now????
Anyway, the following morning Ava cried for approximately 1 full hour because she wanted to hold the bird (who was out on the deck in the "penthouse suite). After seeing the look on my face, Madison & Christian had a "quickie funeral" for little Tweeter and we called it a day.
On a side note, this past Saturday we ran (or rather...trotted) the Matthew Siravo 5K road race. The kids did a race as well, and really got a kick out of it. So in hopes to redeem myself, a friend and I will be running another 5K race this upcoming Wednesday.
Before totally giving up on all the diet did for us, we just didn't feel right about taking Ava off it until we had a second set of eyes look at her to see if any changes could be made to help us regain the control we saw in the beginning. It appeared, last week, that "the cancellation list" really translates to the "never going to call you...ever...list"! We were NOT expecting anything to come of our MassGeneral hopes, and we were patiently waiting for our July 29th appointment with Dr. Bergin at Boston Children's Hospital.
Surprisingly we got a call 4:59 Friday afternoon to see if we could make it in Monday. Of course, we jumped at the opportunity. Both Matt and I really liked Dr. Thiele, and their super cool waiting room & blood lab in the next room! We talked a lot about meds, not giving up on the diet, and....the VNS.....gulp.
I had been pondering the possibility of the VNS for a few weeks now. My thoughts were.....why waste a year or longer on drug trials that most likely won't work and dope her up and hamper her ability to think and learn. All though both neuros understand our thinking.....they (our local one and Dr. T) both feel it wouldn't provide the control we are looking for, and think with some adjustments to the diet and playing with the meds, we can be in a better place.
I'm willing to give it a try. I'm still waiting for the nutritionist to give me her recommendations, and see how I can make it work. We're raising her Clobazam a bit, which I'm not too keen on (as it makes her VERY hyper). So that puts us at 20mg per day...it seems like a lot. But it IS helping.
I also found out yesterday that we FINALLY got our insurance approval to get our SCN1A genetic testing. What a long wait! We waited almost 4 weeks for our insurance company to decide whether or not it would be "worth it" for her to get the test done. It really blows me away sometimes. Ava has been suffering having seizures for over 2 years, with no cause determined, what is there to decide on???
So, since it's been so long since I've posted I'll fill everyone in on some family news (yes...there are actually other people in our family other than AVA *LOL*) Christian finished his baseball season with a great last game, and not after puking a few times afterwards because of the heat **that's my boy**! Both kids had end of the year performances at their school, and we are sooo proud of how well both of them did this year in school (despite all our drama around here sometimes).
They found an injured bird in the yard yesterday, and drove me nuts for hours. So, yes, I'll admit that I did put a make shift splint on it's leg (hoping it would fly, fly, away so my 3 kids would STOP touching it) to no avail. So after lots of tears, our neighbor made a little house for it to spend it's last hours in.
Is it wrong that I'm laughing about this right now????
Anyway, the following morning Ava cried for approximately 1 full hour because she wanted to hold the bird (who was out on the deck in the "penthouse suite). After seeing the look on my face, Madison & Christian had a "quickie funeral" for little Tweeter and we called it a day.
On a side note, this past Saturday we ran (or rather...trotted) the Matthew Siravo 5K road race. The kids did a race as well, and really got a kick out of it. So in hopes to redeem myself, a friend and I will be running another 5K race this upcoming Wednesday.
Thursday, June 5, 2008
Coffee...Coffee...Coffee....
So it's no secret that I've really been pretty down the past few weeks. I know, like always, I'll roll out of the gutter and get back to being myself...but right now....I"m just having a really hard time bouncing back.
That being said....I just couldn't resist sharing this with everyone.
Today, after 1 meeting with the school liasion (which didn't exactly go well), 1 speech therapy session, and 1 two hour Early Intervtion playgroup....I was feeling pretty drained, and really needed a pick-me-up. I decided to head to Starbucks (and order a very large iced coffee with lots of sugar!) before going home and finishing the day.
So we're waiting in line, and as I'm telling the barista my order....Ava screams "GET MOMMY'S COFFEE". I just couldn 't stop laughing! I guess it was obvious even to my 2 year old who had been examined and in therapy literally all day....that I was the one who needed something.....RIGHT NOW!!!
As stressful, and heart breaking as things can be sometimes....I sure do love having another little one. She might not be perfect, but at times, I just have that overwhelmeing feeling that she's exactly who she's supposed be. I don't know what the future holds for her, but something tells me.....she'll handle it just fine.
With a little coffee....I might just be o.k. too.
That being said....I just couldn't resist sharing this with everyone.
Today, after 1 meeting with the school liasion (which didn't exactly go well), 1 speech therapy session, and 1 two hour Early Intervtion playgroup....I was feeling pretty drained, and really needed a pick-me-up. I decided to head to Starbucks (and order a very large iced coffee with lots of sugar!) before going home and finishing the day.
So we're waiting in line, and as I'm telling the barista my order....Ava screams "GET MOMMY'S COFFEE". I just couldn 't stop laughing! I guess it was obvious even to my 2 year old who had been examined and in therapy literally all day....that I was the one who needed something.....RIGHT NOW!!!
As stressful, and heart breaking as things can be sometimes....I sure do love having another little one. She might not be perfect, but at times, I just have that overwhelmeing feeling that she's exactly who she's supposed be. I don't know what the future holds for her, but something tells me.....she'll handle it just fine.
With a little coffee....I might just be o.k. too.
Wednesday, June 4, 2008
Breaking Records
I know it's been awhile since I've updated, but I've just been having such a hard time dealing with things.
So let's start with the good news. We've made it passed our dreaded 8 week milestone. We've never made it longer than 8 weeks withough a major status seizure and hospital trip. This week will be 10 weeks...no staus epilepctus.
It's been so hard to see Ava struggling with the drop seizures again, after almost 4 months of "freedom". I've just been so sad to see this happening to her. She just wants to be a "normal" two year old sooo badly, and absolutely HATES when we have to make her take a break from the sun, or physical activity when she's having a bad cluster of seizures. My heart has been very, very heavy these past few weeks.
I'm really having some serious reservations about putting any more time into the diet, as what we are seeing daily is telling us.....it's not working. We've had discussions back and forth. Neuro, me, Matt, neuro again. We weren't able to see the out-of-state (Mass.) Dr. we had our hearts set on, and will have to wait to for our 2nd choice to squeeze us in the end of July.....which right now...seems like forever. I'm just not feeling 100% about terminating the diet until I feel like we've exhausted every possible option with it. I need a good, experienced set of eyes to look at our menus, mealtimes, every little thing we're doing....and see if there is anything different that would help us get better control.
There really isn't any other anti-epileptic medication that is on the table for us right now. All the choices we have left....aren't good ones. Somehow....something just has to give for Ava. The Clobazam seems to help a bit. Especially the first few hours after she takes it. I called neuro yesterday to see if we could add a small afternoon dose, and see where that takes us.
Madison and Christian have been soooo busy with sports, school plays, and end of the year stuff. It's been a lot of running around to baseball games, softball practice, school play rehearsals, performances...etc.
I wish the sun and heat didn't irritate Ava so much, as it makes it really difficult for us to have "fun in the sun" so to speak. We signed the kids up for a 1/2 day camp and 15 field trips over the summer. They are totally psyched to start (after the summer we had last year)! Most of their school friends will be there, and it will give me a few hours to get organized in the morning.
I've been swamped with appointments trying to get Ava ready to transition all her therapies from Early Intervention into the school system (on top of all our regular appointments)! Lots of "seizure" talk....which I've had up to my ears of these past few weeks! I'm soo worried about how she's going to do in school physically. Heat, loud noises, and sunlight are major triggers for her. We're still working out the details, but I can already tell...it's going to be a fight for us to get what she needs to be safe at school next year.
Well off to make some more Ketogenic meals!
So let's start with the good news. We've made it passed our dreaded 8 week milestone. We've never made it longer than 8 weeks withough a major status seizure and hospital trip. This week will be 10 weeks...no staus epilepctus.
It's been so hard to see Ava struggling with the drop seizures again, after almost 4 months of "freedom". I've just been so sad to see this happening to her. She just wants to be a "normal" two year old sooo badly, and absolutely HATES when we have to make her take a break from the sun, or physical activity when she's having a bad cluster of seizures. My heart has been very, very heavy these past few weeks.
I'm really having some serious reservations about putting any more time into the diet, as what we are seeing daily is telling us.....it's not working. We've had discussions back and forth. Neuro, me, Matt, neuro again. We weren't able to see the out-of-state (Mass.) Dr. we had our hearts set on, and will have to wait to for our 2nd choice to squeeze us in the end of July.....which right now...seems like forever. I'm just not feeling 100% about terminating the diet until I feel like we've exhausted every possible option with it. I need a good, experienced set of eyes to look at our menus, mealtimes, every little thing we're doing....and see if there is anything different that would help us get better control.
There really isn't any other anti-epileptic medication that is on the table for us right now. All the choices we have left....aren't good ones. Somehow....something just has to give for Ava. The Clobazam seems to help a bit. Especially the first few hours after she takes it. I called neuro yesterday to see if we could add a small afternoon dose, and see where that takes us.
Madison and Christian have been soooo busy with sports, school plays, and end of the year stuff. It's been a lot of running around to baseball games, softball practice, school play rehearsals, performances...etc.
I wish the sun and heat didn't irritate Ava so much, as it makes it really difficult for us to have "fun in the sun" so to speak. We signed the kids up for a 1/2 day camp and 15 field trips over the summer. They are totally psyched to start (after the summer we had last year)! Most of their school friends will be there, and it will give me a few hours to get organized in the morning.
I've been swamped with appointments trying to get Ava ready to transition all her therapies from Early Intervention into the school system (on top of all our regular appointments)! Lots of "seizure" talk....which I've had up to my ears of these past few weeks! I'm soo worried about how she's going to do in school physically. Heat, loud noises, and sunlight are major triggers for her. We're still working out the details, but I can already tell...it's going to be a fight for us to get what she needs to be safe at school next year.
Well off to make some more Ketogenic meals!
Tuesday, May 13, 2008
Ages and Stages
Ava's been talking and learning so much these past few weeks. Although her seizures have returned, she's taking it all with stride. She's really been making us laugh so much lately with all her cute little two year old antics.
Yesterday, we decided to restart anti-epileptic medication. It was a very tough decision, but we have to do what's best for not just Ava, but everyone in the family. We will be starting Clobazam next week, and hope it gives us some better control without affecting her learning and language as negatively as some of the other meds.
During our appointment yesterday with our Pedi. Neuro I really saw our situation in a very different light. As I was complaining about the recent seizure activity Neuro reminded me how terrible and unhappy Ava was on Depakote, and her months of no sleep on Keppra, when in the end, she was still having the same amount of seizures.
Quite frankly, I must agree with Neuro, this is the best Ava's felt physically in quite some time (despite the seizures). It really made me realize that the medications were: a) not providing decent control and b) making her feel worse than the seizures. So the fact that she's feeling good for the most part, and able to learn and remember things despite the seizures made for a really tough decision yesterday. I've been so obsessed with the seizures and my ultimate goal to be "seizure free", I never bothered to think about how she might feel. If she could tell us.....would she want to be on medication.......or deal with the seizures and feel "normal".
So in the end, all parties agreed. We must keep trying to work toward giving Ava the best quality of life possible. And right now....that means a low, low dose of meds to give us a shot at better seizure control, and us continuing with the diet.
Because it was so difficult to get and keep our feisty little two year old on the Ketogenic Diet, we all decided that taking her off the diet to test it's effectiveness would be ideal, but just not in the cards for us. I've worked so long and hard to actually get her to eat on a daily basis and not reject the foods, and because she had such wonderful success in the beginning, we're going to stick with it for awhile longer.
We also decided to head to Massachusetts for a consult at Mass General to help us fine tune the diet in any way we can to get better success with some more experienced dietitians.
Last night, after pondering everything that happened during the day, and after a comical phone conversation with a friend I was truly amazed by all the stages (and ages) we've been through with the epilepsy monster.
Yesterday, we decided to restart anti-epileptic medication. It was a very tough decision, but we have to do what's best for not just Ava, but everyone in the family. We will be starting Clobazam next week, and hope it gives us some better control without affecting her learning and language as negatively as some of the other meds.
During our appointment yesterday with our Pedi. Neuro I really saw our situation in a very different light. As I was complaining about the recent seizure activity Neuro reminded me how terrible and unhappy Ava was on Depakote, and her months of no sleep on Keppra, when in the end, she was still having the same amount of seizures.
Quite frankly, I must agree with Neuro, this is the best Ava's felt physically in quite some time (despite the seizures). It really made me realize that the medications were: a) not providing decent control and b) making her feel worse than the seizures. So the fact that she's feeling good for the most part, and able to learn and remember things despite the seizures made for a really tough decision yesterday. I've been so obsessed with the seizures and my ultimate goal to be "seizure free", I never bothered to think about how she might feel. If she could tell us.....would she want to be on medication.......or deal with the seizures and feel "normal".
So in the end, all parties agreed. We must keep trying to work toward giving Ava the best quality of life possible. And right now....that means a low, low dose of meds to give us a shot at better seizure control, and us continuing with the diet.
Because it was so difficult to get and keep our feisty little two year old on the Ketogenic Diet, we all decided that taking her off the diet to test it's effectiveness would be ideal, but just not in the cards for us. I've worked so long and hard to actually get her to eat on a daily basis and not reject the foods, and because she had such wonderful success in the beginning, we're going to stick with it for awhile longer.
We also decided to head to Massachusetts for a consult at Mass General to help us fine tune the diet in any way we can to get better success with some more experienced dietitians.
Last night, after pondering everything that happened during the day, and after a comical phone conversation with a friend I was truly amazed by all the stages (and ages) we've been through with the epilepsy monster.
Tuesday, April 29, 2008
Let the Games Begin!
Baseball season is here, and this week is "Game Week". Christian has his first game tomorrow, and we're back in activities mode. Quite honestly, last year, Ava was so sick that the two older kids really didn't get to do as many sports and activities as we usually do. In fact, truth be told, I really wasn't up to facing anyone. All the questions, the "you poor thing" faces....I just couldn't do it. Anyone who knows me well knows that there is one thing I absolutely cannot do.
A poker face.
As much as I've been hemming and hawing about the diet, things are better. Not perfect....but better.
I'm much more comfortable with accepting Ava for who she is, and not trying to pretend things aren't exactly what they are. She is constantly examined by every mother, father, and town resident who knows she's had a seizure disorder. In all truthfulness, I think I'm really starting to be O.K. with it (except for the occasional ignorant comment). It's easy to forget what life was like without a special needs child, and instead of getting royally pissed off by the looking, the questions, and the totally weird comments sometimes, I've really been trying to picture "the old me" in the other persons shoes.
So now that Mom's not a ticking time bomb anymore*LOL* we're all really excited to start the summer. Madison's been working hard on a school play. She's working the tech crew, and absolutely loves it. Madison's not the "I want the spotlight" type, but is definitely the artsy, organized type. So this has suited her perfect. She starts softball in a few weeks herself. This will be her 3rd year, and she itching to get started.
As for Ava, well, she's shaping up to be a very busy little 2 yr. old. Even though we've been seeing quite a few breakthrough seizures, she's talking and learning at lightning speed (go figure). We changed the ratio on her diet (more fats, less prot. & carb), and it's seemed to make a slight difference, but we're still seeing too many breakthroughs. In the next 2 weeks we will be moving her up to a 4:1 ratio.
She's been sleeping beautifully the past 2 months and I'd really hate to start a med & have her go back to being massively irritated and sleepless. On the other hand, I'm ready to do what's best for her....whatever that means. So the next few weeks will be crucial for us.
A poker face.
As much as I've been hemming and hawing about the diet, things are better. Not perfect....but better.
I'm much more comfortable with accepting Ava for who she is, and not trying to pretend things aren't exactly what they are. She is constantly examined by every mother, father, and town resident who knows she's had a seizure disorder. In all truthfulness, I think I'm really starting to be O.K. with it (except for the occasional ignorant comment). It's easy to forget what life was like without a special needs child, and instead of getting royally pissed off by the looking, the questions, and the totally weird comments sometimes, I've really been trying to picture "the old me" in the other persons shoes.
So now that Mom's not a ticking time bomb anymore*LOL* we're all really excited to start the summer. Madison's been working hard on a school play. She's working the tech crew, and absolutely loves it. Madison's not the "I want the spotlight" type, but is definitely the artsy, organized type. So this has suited her perfect. She starts softball in a few weeks herself. This will be her 3rd year, and she itching to get started.
As for Ava, well, she's shaping up to be a very busy little 2 yr. old. Even though we've been seeing quite a few breakthrough seizures, she's talking and learning at lightning speed (go figure). We changed the ratio on her diet (more fats, less prot. & carb), and it's seemed to make a slight difference, but we're still seeing too many breakthroughs. In the next 2 weeks we will be moving her up to a 4:1 ratio.
She's been sleeping beautifully the past 2 months and I'd really hate to start a med & have her go back to being massively irritated and sleepless. On the other hand, I'm ready to do what's best for her....whatever that means. So the next few weeks will be crucial for us.
Friday, April 18, 2008
Spring Break
The kids have been on vacation all week, and we've all made it through alive, although we do have three days left! The weather has been phenomenal and we've been on lots of bike rides, and clocking in tons of baseball practice. Christian started his coach pitch T-ball & Madison starts softball soon, so we're looking forward to getting back in the swing of things.
Ava has had a roller coaster of good days and bad days over the past two weeks. It's so hard to correlate her bad days with any one thing, as she has been on a sneak-a-thon with food. She's been caught eating crumbs off the rug, and pretty much anything that looks like food. Needless to say, Matt feels it's the best thing that's happened so far as I'm vacuuming like crazy and the counters are always clean. The first thing she does when we go to anyone's house is comb the rug and corners from crumbs.
We decided to change the ratio of her diet from 3:1 to 3.5:1, in hopes we can see a bit more consistency, and better control. We're going to give this a few weeks and see where we're at. We are still completely off all seizure medication, and the goal is to stay that way. She is still doing so well with her speech and she is getting so much stronger. I really think that 2 week bout with the flu/pneumonia, then all the other illnesses that followed really knocked out her physical strength, as she's made so much progress over the past few weeks. She's back to running away, climbing up the swing set, and all her other fav. activities.
So we're still plugging along with the diet and praying we can stay away from meds.
We're looking forward to a seizure free summer!
Say it again.....................
SEIZURE FREE SUMMER!!!!!!!!!!!!!!!!!!!!!!
Ava has had a roller coaster of good days and bad days over the past two weeks. It's so hard to correlate her bad days with any one thing, as she has been on a sneak-a-thon with food. She's been caught eating crumbs off the rug, and pretty much anything that looks like food. Needless to say, Matt feels it's the best thing that's happened so far as I'm vacuuming like crazy and the counters are always clean. The first thing she does when we go to anyone's house is comb the rug and corners from crumbs.
We decided to change the ratio of her diet from 3:1 to 3.5:1, in hopes we can see a bit more consistency, and better control. We're going to give this a few weeks and see where we're at. We are still completely off all seizure medication, and the goal is to stay that way. She is still doing so well with her speech and she is getting so much stronger. I really think that 2 week bout with the flu/pneumonia, then all the other illnesses that followed really knocked out her physical strength, as she's made so much progress over the past few weeks. She's back to running away, climbing up the swing set, and all her other fav. activities.
So we're still plugging along with the diet and praying we can stay away from meds.
We're looking forward to a seizure free summer!
Say it again.....................
SEIZURE FREE SUMMER!!!!!!!!!!!!!!!!!!!!!!
Saturday, April 12, 2008
Friday, April 4, 2008
The Miracle of the Moment
Everyone that knows me fairly well knows I'm a big Joel Osteen fan. It's actually become a big joke with most of my friends and family. The prank calls when I'm having a bad day.....my sister putting stickers on the side of our fridge of sayings from one of his mailings (which by the way was addressed to her!...sorry Beth...I've outed you).
When Ava was first admitted into the hospital to start her very first course of treatment with ACTH I read his first book....and.....it really encouraged me and helped us stay focused, and most importantly..positive.
I think one of the reasons I like Joel Osteen so much is that I love bold statements. I always have. I actually landed one my favorite jobs as a Purchasing Agent by bluffing (sorry Joel) on my resume because I just KNEW that job was perfect for me and I just couldn't live with the "what if"...I went for it.
I love dreaming big.....and EXPECTING nothing less than the best. So I'm sure you can imagine this has been a hard sell for the rest of the family, after all we've been through. That being said, even during the worst of times, I've always manged to roll out of the gutter and keep the faith (even if it took a few days....o.k.....weeks).
I still believe that our horrible chain of events in February happened for a reason. I would have never agreed to take Ava off of medication voluntarily. So when I found myself having a conversation with our neurologist about restarting meds, I really had to sit down a think about what my heart was telling me.
After a lot of soul searching (and reading some of my old blog posts), it didn't take me long to decide. There was NO WAY I was giving up this easily after all we've been through. Oh yes, and of course I had to ask myself WWJD (what would Joel Do)??? *LMBO* Thus....another bold statement.
"I don't care if we're syringing butter, making keto muffins until 2 am, or whatever it takes....we're going to see this through. If she can be seizure free on it once, she can do it again. So bring it on. It might not be today or tomorrow, but we will overcome this".
So, the past week Ava has been doing exceptional. A 95% reduction in seizures from where we were the previous weeks (we still see about 3 per day). Her energy is great, and her language has skyrocketed. In the past week she began speaking in full sentences......we are just shell shocked. She stopped rejecting food, and is completely healthy.
Right now we're all just enjoying the miracle of the moment.
Every moment we see her talk, laugh and play. Every moment we can breath easy and feel "normal" again. Most importantly, every moment we see with our physical eyes one of our bold statements becoming a reality......
When Ava was first admitted into the hospital to start her very first course of treatment with ACTH I read his first book....and.....it really encouraged me and helped us stay focused, and most importantly..positive.
I think one of the reasons I like Joel Osteen so much is that I love bold statements. I always have. I actually landed one my favorite jobs as a Purchasing Agent by bluffing (sorry Joel) on my resume because I just KNEW that job was perfect for me and I just couldn't live with the "what if"...I went for it.
I love dreaming big.....and EXPECTING nothing less than the best. So I'm sure you can imagine this has been a hard sell for the rest of the family, after all we've been through. That being said, even during the worst of times, I've always manged to roll out of the gutter and keep the faith (even if it took a few days....o.k.....weeks).
I still believe that our horrible chain of events in February happened for a reason. I would have never agreed to take Ava off of medication voluntarily. So when I found myself having a conversation with our neurologist about restarting meds, I really had to sit down a think about what my heart was telling me.
After a lot of soul searching (and reading some of my old blog posts), it didn't take me long to decide. There was NO WAY I was giving up this easily after all we've been through. Oh yes, and of course I had to ask myself WWJD (what would Joel Do)??? *LMBO* Thus....another bold statement.
"I don't care if we're syringing butter, making keto muffins until 2 am, or whatever it takes....we're going to see this through. If she can be seizure free on it once, she can do it again. So bring it on. It might not be today or tomorrow, but we will overcome this".
So, the past week Ava has been doing exceptional. A 95% reduction in seizures from where we were the previous weeks (we still see about 3 per day). Her energy is great, and her language has skyrocketed. In the past week she began speaking in full sentences......we are just shell shocked. She stopped rejecting food, and is completely healthy.
Right now we're all just enjoying the miracle of the moment.
Every moment we see her talk, laugh and play. Every moment we can breath easy and feel "normal" again. Most importantly, every moment we see with our physical eyes one of our bold statements becoming a reality......
Saturday, March 29, 2008
When is enough...enough?
When is enough...enough? This is the question I posed to Ava's neuro this past Thursday.
For the past few weeks, we've noticed the seizures slowly creeping back. For the past 4 or so days, they've been back to 30 per day. Her ketones are staying on the higher side, but not at the optimum level we would like to see. In order for us to reach a deeper ketosis, we would have to change the ratio (more fats..less carbs/protein).
Ava has had 4 major illness since the initiation of the Ketogenic Diet. She has had one major hospitalization, and a status seizure brought on by a fever...due to an illness. In our opinion, this diet has done a number on her immune system.
I put in a call to our dietitian last week, as Ava had been rejecting for a few days straight....and what food she was eating...I know, was not even close to being the ratio or calories it should. I'm not exactly sure what I wanted her to tell me. I already know all the stock answers to this problem......try new foods....don't make a big deal of it....start the bicitra again....make sure she gets plenty of fluids....check your mealtimes.....blah..blah..blah...we've been through weeks of rejection before.
What I needed was some MEGA reassurance, before I jumped ship. I explained how desperate I was for ways to help her eat....how upset we all are seeing this many seizures AGAIN....I'm pretty sure I sounded pretty desperate. The seizures are back, she's not eating, we still don't eat in front of her because she cries for our food, so we're ALL in this. Every single person in this house.
She assured me she would make a few calls to some fellow dietitians re: our case, and get back to me.
So long story short......had a major melt down while waiting for the "call back" and left a message for Ava's neuro Thursday morning crying and saying I was going to quit the diet the following day....I just couldn't do it anymore....I'm too discouraged...too tired....too heartbroken. Once again, the Epilepsy had gotten the best of me. I was down for the count.
Our pedi neurologist has been with us since day one. He met Ava when she was only 6 months old....and he's seen us through many, many, hard times, and difficult decisions. He knows my personality so well now, it actually scares me sometimes *LOL* I'm sure he had a pretty good idea of my state of mind, and knew exactly what to say. This is definitely not my first melt down over a failing treatment. We've had many.
So after an hour convo. w/ our neuro, talk of meds, talk of no meds, and lots, and lots of crying and listening to what my heart was telling me..........
I promised the doc we'd give it a full six months....GULP!
I feel good today. I've gotten all those negative feelings and doubts out of my system, and I'm ready to give this my 100%....again *LOL*.
Last but not least....my sister Bethany gave birth to a beautiful (4 wk early!!) baby girl on Wednesday.
Ileana Rose Caro. She is such a beautiful sweet spirited baby, and we all can't get our hands off of her (especially all the germ ridden cousins!)
For the past few weeks, we've noticed the seizures slowly creeping back. For the past 4 or so days, they've been back to 30 per day. Her ketones are staying on the higher side, but not at the optimum level we would like to see. In order for us to reach a deeper ketosis, we would have to change the ratio (more fats..less carbs/protein).
Ava has had 4 major illness since the initiation of the Ketogenic Diet. She has had one major hospitalization, and a status seizure brought on by a fever...due to an illness. In our opinion, this diet has done a number on her immune system.
I put in a call to our dietitian last week, as Ava had been rejecting for a few days straight....and what food she was eating...I know, was not even close to being the ratio or calories it should. I'm not exactly sure what I wanted her to tell me. I already know all the stock answers to this problem......try new foods....don't make a big deal of it....start the bicitra again....make sure she gets plenty of fluids....check your mealtimes.....blah..blah..blah...we've been through weeks of rejection before.
What I needed was some MEGA reassurance, before I jumped ship. I explained how desperate I was for ways to help her eat....how upset we all are seeing this many seizures AGAIN....I'm pretty sure I sounded pretty desperate. The seizures are back, she's not eating, we still don't eat in front of her because she cries for our food, so we're ALL in this. Every single person in this house.
She assured me she would make a few calls to some fellow dietitians re: our case, and get back to me.
So long story short......had a major melt down while waiting for the "call back" and left a message for Ava's neuro Thursday morning crying and saying I was going to quit the diet the following day....I just couldn't do it anymore....I'm too discouraged...too tired....too heartbroken. Once again, the Epilepsy had gotten the best of me. I was down for the count.
Our pedi neurologist has been with us since day one. He met Ava when she was only 6 months old....and he's seen us through many, many, hard times, and difficult decisions. He knows my personality so well now, it actually scares me sometimes *LOL* I'm sure he had a pretty good idea of my state of mind, and knew exactly what to say. This is definitely not my first melt down over a failing treatment. We've had many.
So after an hour convo. w/ our neuro, talk of meds, talk of no meds, and lots, and lots of crying and listening to what my heart was telling me..........
I promised the doc we'd give it a full six months....GULP!
I feel good today. I've gotten all those negative feelings and doubts out of my system, and I'm ready to give this my 100%....again *LOL*.
Last but not least....my sister Bethany gave birth to a beautiful (4 wk early!!) baby girl on Wednesday.
Ileana Rose Caro. She is such a beautiful sweet spirited baby, and we all can't get our hands off of her (especially all the germ ridden cousins!)
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