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!)
Saturday, March 29, 2008
Thursday, March 20, 2008
Status....Epilepticus
Yesterday was a great day. We only noticed about 3 minor seizures. Ava was in the best of moods, and the only problem was....it was raining outside (and Christian came home heartbroken about a snack sharing incident on the bus). Well, it was nothing a few silly comments from Mommy and a few laughs couldn't solve.
In fact, I even snuck in some much needed exercise time in, and the kids played at the YMCA for awhile. So I was trying to quietly sneak in the shower....and she caught me. The LaBonte shower/bath patrol.....banging on the door with her toys...."mommy..bath...me....".
When I opened the door and took one look at her hair and face I decided she must have looked in the mirror before asking to come in *LOL*. Anyway I was washing her hair and she was squirting water in my face and I noticed a jerk. Then her eyes deviated.....here we go again.... She was actually coherent and talking, so I was hoping it was a partial that would pass in a second or two.
In the matter of two minutes it turned into a full on tonic/clonic seizure. After 20mg's of Diazepam, we had to call the rescue. We're in status, so back to the hospital again.
Madison was circling Ava even though we asked her to go to her room, and she knows the drill. This time....she was very worried. So long story short...seizure broke right before we got to the hospital, 20 minutes total. O2 was great the whole time, no real fever (100.2); we were in and out in 2 hours and home by 11pm. , a good night for the Hasbro ER which was completely packed. I've come to the conclusion that there ARE some benefits to knowing everyone there!
No sooner we walked in the door, Madison threw up in her bed. Now mind you, this is not the first time this has happened. Madison has thrown up a few times on nights when Ava has seizures, and we actually have a pretty decent stock of Pepto for Madison! It's a pretty simple protocol, Ava has seizure, Madison needs Pepto.
So I let Madison take the day off from school today & spend it with me & Ava, and do some pukey laundry, but when I went to turn on the washer this morning....it was broken.
Am I still sleeping...or is this for real?????
So as soon as Ava woke up this morning I gave her the once over....hmmm...she looked a bit red, so I took her temp.....103.7. I was actually relieved, as sick as that sounds. There was a reason for the seizure, she's sick.....AGAIN. I did have them give her Tylenol in the ER, as anything over 100 deg. mixed with a seizure is preventative Tylenol time in our book. I also gave her some Motrin in the early a.m. just in case.
Now it's time to get out of my ratty robe, go pick up my scripts for Ava, wait for the repair man, make some keto meals and get on with the day.
We survived another status.
In fact, I even snuck in some much needed exercise time in, and the kids played at the YMCA for awhile. So I was trying to quietly sneak in the shower....and she caught me. The LaBonte shower/bath patrol.....banging on the door with her toys...."mommy..bath...me....".
When I opened the door and took one look at her hair and face I decided she must have looked in the mirror before asking to come in *LOL*. Anyway I was washing her hair and she was squirting water in my face and I noticed a jerk. Then her eyes deviated.....here we go again.... She was actually coherent and talking, so I was hoping it was a partial that would pass in a second or two.
In the matter of two minutes it turned into a full on tonic/clonic seizure. After 20mg's of Diazepam, we had to call the rescue. We're in status, so back to the hospital again.
Madison was circling Ava even though we asked her to go to her room, and she knows the drill. This time....she was very worried. So long story short...seizure broke right before we got to the hospital, 20 minutes total. O2 was great the whole time, no real fever (100.2); we were in and out in 2 hours and home by 11pm. , a good night for the Hasbro ER which was completely packed. I've come to the conclusion that there ARE some benefits to knowing everyone there!
No sooner we walked in the door, Madison threw up in her bed. Now mind you, this is not the first time this has happened. Madison has thrown up a few times on nights when Ava has seizures, and we actually have a pretty decent stock of Pepto for Madison! It's a pretty simple protocol, Ava has seizure, Madison needs Pepto.
So I let Madison take the day off from school today & spend it with me & Ava, and do some pukey laundry, but when I went to turn on the washer this morning....it was broken.
Am I still sleeping...or is this for real?????
So as soon as Ava woke up this morning I gave her the once over....hmmm...she looked a bit red, so I took her temp.....103.7. I was actually relieved, as sick as that sounds. There was a reason for the seizure, she's sick.....AGAIN. I did have them give her Tylenol in the ER, as anything over 100 deg. mixed with a seizure is preventative Tylenol time in our book. I also gave her some Motrin in the early a.m. just in case.
Now it's time to get out of my ratty robe, go pick up my scripts for Ava, wait for the repair man, make some keto meals and get on with the day.
We survived another status.
Sunday, March 16, 2008
A Cup of Joe
So I just had to post this picture of Ava drinking my empty cup of coffee. She cracks us up every morning trying to carry any mug she see's around the house and give it to me saying "here Dear"! She REALLY wants me to have my coffee in the morning....and so does everyone else!
Even though this past week we've had a few set backs, Ava really is talking better than ever. Both her receptive and expressive language have really improved since we started the diet. We're beginning to actually understand many more of her words, and her mood in general has really been great. Since returning from the hospital a few weeks ago, she has really turned into such a playful, spunky little girl.
We have been having so much fun with her lately, and it really feels good to see her doing more laughing than crying.
Even though this past week we've had a few set backs, Ava really is talking better than ever. Both her receptive and expressive language have really improved since we started the diet. We're beginning to actually understand many more of her words, and her mood in general has really been great. Since returning from the hospital a few weeks ago, she has really turned into such a playful, spunky little girl.
We have been having so much fun with her lately, and it really feels good to see her doing more laughing than crying.
Wednesday, March 12, 2008
Our Little Two Year Old
I haven't posted in awhile, so here's the latest on the LaBonte front.
Ava recovered nicely from our "attack of the rotovirus". Last Tuesday, March 4th was our first "normal day", and things have been somewhat uneventful on the immune system front.
Ava had a stretch of about a week of seizure free days after we were home from the hospital, and slowly....we're seeing them creep back. One here, one there, then two here, three there and so on. They are, however, pretty subtle compared to the ones we were battling before the diet.
So when I see seizures.....I'm just downright MAD. I'm mad that my whole day is focused on doing everything I can to stop the seizures....and their STILL there. I'm also, just so very tired.
This diet pretty much consumes my entire day. Ava eats 6 times per day (three meals and three snacks). Between preparing and weighing all six meals, making sure she eats on time, feeding her most of them (as to not loose any melted better), and writing down all her fluid consumption.....I'm pretty much spent at the end of the day, with nothing left for anyone or anything else.
As crazy as it sounds, sometimes I feel like this whole epilepsy ordeal is just like one of those never ending baseball games or one of those bad reality TV shows that you really don't want to watch, never admit to your friends your hooked on, but just MUST find out what happens every week.
I tell everyone she's doing wonderful, and, of course, the few seizures per day she will have, will be at the worst possible time.....for everyone to see. I'm really considering if they could rename Murphy's Law, to LaBonte's Law!
I found myself actually being frustrated with Ava this week for being so persistent with demanding drinks. The excess fluid is causing the drop in Ketosis which equals seizures. Why can't she just listen! Doesn't she realize she's doing this to herself!
I was actually laughing at myself this morning reflecting on our week. Ava is two years old! Yes, she does have many obstacles, but in many ways she's just a regular two year old....testing me...and trying to flex her muscles. So this is the part where I tell her no more drinks and that's that...she cries for awhile, but we get through it (and it took me all week to figure this out!!!)
I expect so much out of my little girl. She wakes up every morning having to deal with this condition, and still laughs, plays, and tries like hell to just be "one of the guys". I guess she just doesn't realize that on top of having to eat six super disgusting meals per day, completely apply herself during speech and physical therapy, go to bed on time, that she must NOT as for too many drinks!
So here's to you Ava......
from today on.......
we don't expect you to do it all. If you have a few seizures, you have a few seizures.. We are all in this together. We're going to keep you extra busy this week so you won't be drinking out of boredom, and hope we have a better week.
We know your doing the best you can, and we're going to make this work. We're sorry for putting too much pressure on you. You try so hard, and, Ava, we are so proud of you EVERY day.
Here's to a great week..................
Ava recovered nicely from our "attack of the rotovirus". Last Tuesday, March 4th was our first "normal day", and things have been somewhat uneventful on the immune system front.
Ava had a stretch of about a week of seizure free days after we were home from the hospital, and slowly....we're seeing them creep back. One here, one there, then two here, three there and so on. They are, however, pretty subtle compared to the ones we were battling before the diet.
So when I see seizures.....I'm just downright MAD. I'm mad that my whole day is focused on doing everything I can to stop the seizures....and their STILL there. I'm also, just so very tired.
This diet pretty much consumes my entire day. Ava eats 6 times per day (three meals and three snacks). Between preparing and weighing all six meals, making sure she eats on time, feeding her most of them (as to not loose any melted better), and writing down all her fluid consumption.....I'm pretty much spent at the end of the day, with nothing left for anyone or anything else.
As crazy as it sounds, sometimes I feel like this whole epilepsy ordeal is just like one of those never ending baseball games or one of those bad reality TV shows that you really don't want to watch, never admit to your friends your hooked on, but just MUST find out what happens every week.
I tell everyone she's doing wonderful, and, of course, the few seizures per day she will have, will be at the worst possible time.....for everyone to see. I'm really considering if they could rename Murphy's Law, to LaBonte's Law!
I found myself actually being frustrated with Ava this week for being so persistent with demanding drinks. The excess fluid is causing the drop in Ketosis which equals seizures. Why can't she just listen! Doesn't she realize she's doing this to herself!
I was actually laughing at myself this morning reflecting on our week. Ava is two years old! Yes, she does have many obstacles, but in many ways she's just a regular two year old....testing me...and trying to flex her muscles. So this is the part where I tell her no more drinks and that's that...she cries for awhile, but we get through it (and it took me all week to figure this out!!!)
I expect so much out of my little girl. She wakes up every morning having to deal with this condition, and still laughs, plays, and tries like hell to just be "one of the guys". I guess she just doesn't realize that on top of having to eat six super disgusting meals per day, completely apply herself during speech and physical therapy, go to bed on time, that she must NOT as for too many drinks!
So here's to you Ava......
from today on.......
we don't expect you to do it all. If you have a few seizures, you have a few seizures.. We are all in this together. We're going to keep you extra busy this week so you won't be drinking out of boredom, and hope we have a better week.
We know your doing the best you can, and we're going to make this work. We're sorry for putting too much pressure on you. You try so hard, and, Ava, we are so proud of you EVERY day.
Here's to a great week..................
Monday, March 3, 2008
And...We're Off
So it's official. We've been off ALL antiepileptic medication for two days and counting. How it happened, is, in my opinion, pretty comical. So here's whats been happening the past few days:
Ava still has the rotovirus, and we are currently on day 9 of random attacks of "the grip", although today did seem better. We only changed her 4 times last night, and Matt & I were commenting this morning on what a good night it was! (That's when you know things are bad, when your grateful your kid only had diarrhea 4 times in a night!)
Ava had been weaned off all medication except for her nighttime dose of Ativan. Our wean should have been completed 3 days prior to Friday, but quite frankly, I was feeling pretty hesitant to remove it, as she has been so sick and had spiked a fever earlier last week. In our house, fever=seizure=hospital.
So in the interest of full disclosure, I was just too exhausted to even deal with even one single seizure of significance, and things have been going so smoothly seizure wise. Why ruin a good thing?
So Friday night, Matt and I were watching TV in bed with Ava, and Matt nicely reminded me I forgot to give Ava her nighttime Ativan. I had a long day, and was feeling pretty settled in. My response was "Well, looks like tonight is the night....no more meds." We both couldn't stop laughing....guess you just had to be there.
Things are going extremely well with Ava, considering she's had a stomach bug for almost 2 weeks. She has not missed any of her Ketogenic meals, and since our return from the hospital, we've only seen less than 5 myoclonic seizures, and a few absences. Prior to us starting the Ketogenic Diet, Ava was having between 15 -40 drop seizures per day. Random partials and complex partials, and countless absence seizures.
The diet has been a God Send...in every sense of the word.
Ava started physical therapy last week, as now that's she's not falling every 5 minutes, we really would like to see her build up some good muscle strength and start jumping and running again. She's slightly behind her peers, but I really feel once she's on the mend from this bug, things will really take off.
Ava still has the rotovirus, and we are currently on day 9 of random attacks of "the grip", although today did seem better. We only changed her 4 times last night, and Matt & I were commenting this morning on what a good night it was! (That's when you know things are bad, when your grateful your kid only had diarrhea 4 times in a night!)
Ava had been weaned off all medication except for her nighttime dose of Ativan. Our wean should have been completed 3 days prior to Friday, but quite frankly, I was feeling pretty hesitant to remove it, as she has been so sick and had spiked a fever earlier last week. In our house, fever=seizure=hospital.
So in the interest of full disclosure, I was just too exhausted to even deal with even one single seizure of significance, and things have been going so smoothly seizure wise. Why ruin a good thing?
So Friday night, Matt and I were watching TV in bed with Ava, and Matt nicely reminded me I forgot to give Ava her nighttime Ativan. I had a long day, and was feeling pretty settled in. My response was "Well, looks like tonight is the night....no more meds." We both couldn't stop laughing....guess you just had to be there.
Things are going extremely well with Ava, considering she's had a stomach bug for almost 2 weeks. She has not missed any of her Ketogenic meals, and since our return from the hospital, we've only seen less than 5 myoclonic seizures, and a few absences. Prior to us starting the Ketogenic Diet, Ava was having between 15 -40 drop seizures per day. Random partials and complex partials, and countless absence seizures.
The diet has been a God Send...in every sense of the word.
Ava started physical therapy last week, as now that's she's not falling every 5 minutes, we really would like to see her build up some good muscle strength and start jumping and running again. She's slightly behind her peers, but I really feel once she's on the mend from this bug, things will really take off.
Thursday, February 28, 2008
One Stinky Week
After a wonderful week home from the hospital, Ava began looking "under the weather" on Saturday....and then it started. Somewhere along the line (have no idea when, because we haven't really left the house) she contracted another virus. I have a good suspicion where this came from (A. H.!!!!!) but no solid leads!!!......
Diarrhea. Seven+ times a day, and all through the night. We are now on day 4 with the end nowhere in sight. She's up about 2-3 times per night with cramps and diarrhea, and we've been homeward bound for the past week, as I'm not sure the public can handle it! I took her to the pediatrician today for the once over, and she seems to be staying pretty well hydrated considering.
On Tuesday afternoon I noticed two seizures, the first I've seen in over a week. I immediately took her temperature, and as I suspected, she was febrile (101.5). She hasn't spiked a fever since that day, and I haven't seen any further seizures of note. We have seen a few absence seizures, but have not seen any drop seizures since our return from the hospital.
Yesterday was Christian's 8th birthday. We had his favorite dinner last night, roast beef, carrots, gravy and twice baked potatoes (he wanted to make it EASY for me!!) We're having a little family party for him tomorrow at his cousins house, and he's super excited to get his new bike and all the "good" presents.
Boy, the time really flies. When he went to bed last night, I was telling him about the day he was born, and it really did seem like just yesterday. When I look at how grown up he looks now, and how mature he is getting, it really takes my breath away. I guess there's just something about mother's and son's.....he'll always be my little boy no matter how old he is!
Diarrhea. Seven+ times a day, and all through the night. We are now on day 4 with the end nowhere in sight. She's up about 2-3 times per night with cramps and diarrhea, and we've been homeward bound for the past week, as I'm not sure the public can handle it! I took her to the pediatrician today for the once over, and she seems to be staying pretty well hydrated considering.
On Tuesday afternoon I noticed two seizures, the first I've seen in over a week. I immediately took her temperature, and as I suspected, she was febrile (101.5). She hasn't spiked a fever since that day, and I haven't seen any further seizures of note. We have seen a few absence seizures, but have not seen any drop seizures since our return from the hospital.
Yesterday was Christian's 8th birthday. We had his favorite dinner last night, roast beef, carrots, gravy and twice baked potatoes (he wanted to make it EASY for me!!) We're having a little family party for him tomorrow at his cousins house, and he's super excited to get his new bike and all the "good" presents.
Boy, the time really flies. When he went to bed last night, I was telling him about the day he was born, and it really did seem like just yesterday. When I look at how grown up he looks now, and how mature he is getting, it really takes my breath away. I guess there's just something about mother's and son's.....he'll always be my little boy no matter how old he is!
It really does weigh on my heart not being able to spend the quality time with Madison and Christian this past year. Just when we all thought things were settling down.....it all started up again. Such is our life!
All things considered, after ho humming a bit and a few complaints from all of us, we sucked it up, and took it in stride. We've actually had lots of laughs this week, and even though we can't change our circumstances, we can, however, change how we react to them.
Well, it's time to go wash that 3 loads of pretty stinky laundry waiting downstairs (Ava had a busy day....you've got to love that rotovirus!).Friday, February 22, 2008
We're Home
Sorry it took me so long to update....so here's our latest. We arrived home from the hospital on Monday, February 18th, after a 15 day stay (13 in intensive care).
Ava's been eating all her meals, and recovering nicely. We've seen no seizures since we came home. So five days seizure free.
I've been trying to sum up this experience we've had, and the only thing that comes to mind is a quote from my one of my favorite novels:
"It was the best of times, it was the worst of times".
Right now, this is just so surreal to us. Before our admission to the hospital, we were fighting to get every meal down, and she was rejecting most of them. We were on a hefty dose of Keppra, and fighting to get that down as well. She was still having seizures, and we were stressed to the max. We wanted to give up. It just seemed too hard. Our daughter was miserable, and so were we, but we kept at it.
For the past 5 days, things have been good. Really good. In less than a week we will be off all anti epileptic medication, a place I never thought we would be.
In the past, I was always too scared to even tell anyone we were seizure free. It always seemed like right as the words came out of my mouth, everything would come tumbling down.
Looking at it in retrospect, it was a test. A test I failed, every time. It took almost loosing her for me to realize that I have to live, walk, eat, and breath......faith.
FAITH............
The one thing...I was sure I had down pat. Since the first moment I heard the words out of the Dr's mouth, deep in my heart, I've always believed that some day.....maybe today, tomorrow, or years from now.....we will overcome this obstacle.
I believed, but never stood up and claimed it, for any of us. I just let my circumstance get the best of me. Fear ruled my life. Fear of the future, mainly. Will my daughter ever be "normal"? Will she ever get married? Will she ever be able to live on her own? And most importantly....
Will she ever really, truly, be happy?
So through this experience, I've come to understand that all of those questions have already been answered. I believe that we were all born to serve a purpose, and as long as we do our part as parents, Ava will walk into hers...whatever it may be. I don't know why she's had to suffer so much in so little time on this earth, but already, she has really touched so many people.
After everything, I feel really, truly grounded, for the first time since this all began. So if we do have a set back, I know we can handle it....the right way.
I learned the hard way (still waiting to meet a person who learns the easy way *LOL*)how to stay at peace during a storm. During the first week of the admission, I was a total basket case of emotions.
Once I got sent home with the flu....I really took that time to seriously reflect on the circumstances, and really have the courage to be true to myself.
I've learned so much through this illness; stuff that might have otherwise taken months or years of little things. The pain sucked.....but we're all better because of it (even Ava)
Until recently, I never truly understood the quote by Freud:
"One day, in retrospect, the years of struggle will strike you as the most beautiful"
Ava's been eating all her meals, and recovering nicely. We've seen no seizures since we came home. So five days seizure free.
I've been trying to sum up this experience we've had, and the only thing that comes to mind is a quote from my one of my favorite novels:
"It was the best of times, it was the worst of times".
Right now, this is just so surreal to us. Before our admission to the hospital, we were fighting to get every meal down, and she was rejecting most of them. We were on a hefty dose of Keppra, and fighting to get that down as well. She was still having seizures, and we were stressed to the max. We wanted to give up. It just seemed too hard. Our daughter was miserable, and so were we, but we kept at it.
For the past 5 days, things have been good. Really good. In less than a week we will be off all anti epileptic medication, a place I never thought we would be.
In the past, I was always too scared to even tell anyone we were seizure free. It always seemed like right as the words came out of my mouth, everything would come tumbling down.
Looking at it in retrospect, it was a test. A test I failed, every time. It took almost loosing her for me to realize that I have to live, walk, eat, and breath......faith.
FAITH............
The one thing...I was sure I had down pat. Since the first moment I heard the words out of the Dr's mouth, deep in my heart, I've always believed that some day.....maybe today, tomorrow, or years from now.....we will overcome this obstacle.
I believed, but never stood up and claimed it, for any of us. I just let my circumstance get the best of me. Fear ruled my life. Fear of the future, mainly. Will my daughter ever be "normal"? Will she ever get married? Will she ever be able to live on her own? And most importantly....
Will she ever really, truly, be happy?
So through this experience, I've come to understand that all of those questions have already been answered. I believe that we were all born to serve a purpose, and as long as we do our part as parents, Ava will walk into hers...whatever it may be. I don't know why she's had to suffer so much in so little time on this earth, but already, she has really touched so many people.
After everything, I feel really, truly grounded, for the first time since this all began. So if we do have a set back, I know we can handle it....the right way.
I learned the hard way (still waiting to meet a person who learns the easy way *LOL*)how to stay at peace during a storm. During the first week of the admission, I was a total basket case of emotions.
Once I got sent home with the flu....I really took that time to seriously reflect on the circumstances, and really have the courage to be true to myself.
I've learned so much through this illness; stuff that might have otherwise taken months or years of little things. The pain sucked.....but we're all better because of it (even Ava)
Until recently, I never truly understood the quote by Freud:
"One day, in retrospect, the years of struggle will strike you as the most beautiful"
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