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 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 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!)

Thursday, March 20, 2008


Yesterday was a great day. We only noticed about 3 minor seizures. Ava was in the best of moods, and the only problem 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...."".

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 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 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.

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..................

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 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 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.

About Ava

Ava Simone LaBonte was born December 1, 2005, a healthy baby. She was a happy, healthy, normal baby until six months old, when we noticed some odd movements, which we thought were exagerated startles. Ava had her first EEG at 6 months, and it was normal. Six weeks following the EEG, Ava began having head drops....and we knew this time, something would show up.

At 8 months old, Ava was diagnosed with Infantile Spasms, a rare form of epilepsy. She was treated immediately with a 4 week course of ACTH. Ava spent 6 weeks "seizure free". All of Ava's MRI's, CT's, and blood tests have been "normal".

On November 20, 2006, Ava had a grand mal seizure which could not be stopped, and she was put in a drug induced coma. We left the hospital on antiepileptic medication, and have been on medication ever since. Ava is currently diagnosed with Generalized Epilepsy.

So far we've tried the following medications: ACTH, Trileptal, Keppra, B-6, Depakote, Carnitor, and currently on the Ketogenic Diet.