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.






7 comments:

baby trevor's mommy said...

I had written out a response...a great response. One for Reader's Digest. And of course it didn't post!

Anyway...thanks for listening & laughing with me last night. It was seriously therapuetic!

I can't even imagine how your heart is torn. But I love how you're handling things. I love how you're willing to fight w/your neuro. And then compromise for Ava. It's soul food for me...here at the beginning.

Sorry that I couldn't make it to the meeting tonight! It's been a loooooong day. And I'm zonked.

Anyway...

I'm just so glad there were no Joel*isms* this time! *wink*

...danielle

labonte4 said...

I didn't make it to group either tonight...long day too.

Poor neuro...we've never really had any "fights", but I sure have driven him crazy at times and vice versa.

Would love to read the digest article.

baby trevor's mommy said...

lol...I'm just glad you are so open...and that he lets you be!

Sometimes I feel SO lucky...Dr. H is great too! Thus...why I'd rather live here than anywhere. Altho we've been thinkin' about crossing the MA line? btw...J had his interview yesterday...don't know anything yet but at least it's something? lol

Oh & Bri has HF&M now! She totally got her drama from her daddy! *wink*

...d

JSmith5780 said...

I have a very similar picture of Austin's medical records. I'll have to post it sometime... it's kind of scary!

I am sorry that Ava has to go back on meds, but really if it's what is best, it is what needs to be done. I hope it works well!

Glad you made D's situation better, I managed to make it worse!

Are you seeing Dr Thiele? I have heard wonderful things about her.

labonte4 said...

We are hoping for Dr. Thiele. Things just aren't cutting it around here.

As for D's sit......my life is too crazy as it is to get into pissing contests about who's life is worse, and who's in the most pain.

I know pain.

My daughter has been in a coma for 5 days....

She almost died this past February.

We've had more status seizures than you'd like to know about.

I get it.

I also remember the pain I was in before, during, and after ACTH...even when she was SF for a time. I haven't forgotten what that was like.

I understand both sides of the specturm. What I don't understand is not being a unified front.

We are all in different places with this "Epilepsy thing". You just respect everyones stage that their in.

I'm not into mean, attacking words of any kind by anyone. Life's just too short.

I've always maintained that if someone does not care for what is written on another's blog, just DON'T read it. If it upsets you....DON'T read it. Nobody's trying to hurt anyone. We're just all trying to get through this in our own way.

We're all entitled to express ourselves however we choose....last time I checked we still had the 1st ammendment.


I feel so badly that people are inflicting more pain on one another over who's situation is more grim. Haven't we all dealt with enough pain? Some of us are in pain daily...watching our children seize, and not being able to do ANYTHING about it!


I just couldn't leave this alone without putting my 2cents in.

baby trevor's mommy said...

wow...

well said R!

I have nothing to add...except thanks for standing beside me!

Both of you!

...danielle

JSmith5780 said...

Hope Ava is doing well!

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.