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.....


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" .


JSmith5780 said...

So much good news in one post! I am so glad that the school district is on your side and is trying to get the one to one nurse. While there may be few in the administration who see Ava as a huge cost/liability, in general, I feel the schools want to see out kids succeed just as much as we do. And when they have a parent as prepared and knowledgeable as you, they know this is a team fight. Everyone working together will go so far in helping Ava.

I am glad you are getting up to Boston, are you going to Children's or back to MA General?

Med changes are such hard decisions. I wish you luck!

baby trevor's mommy said...! They were probably too scared of you to argue! You're totally coming to represent me when it's our turn.*smile* I'm SO glad that things went better than anticipated. My mom's motto is always think the you can be happy when it's not! lol

I can't believe you're hesitating about Zonegran! lol I thought that was my role to fill...freaking out about new meds! Honestly...the Zon hasn't seemed to dull Trevy. If anything it's helped him sleep better. Not so sure about controlling his seizures...they seem about the same. The kidney stones are scary...espeically in tandem with the diet. Ugh...

Anyway...I'm SO happy this day is over for you! And that it ended happy!

labonte4 said...

Jen, you are definitely right. I was assuming the worst case scenario, but, in general, all in attendance are looking forward to working with her and helping her succeed. We are going to see Dr. Bergin at BCH. Although we did like Dr. Theile, the dietician was (an unmentionable name)*LOL* and we just can't work together. We met Dr. B. a few months ago, and I really liked her, but my insurance co. was fighting me on the referral.

As much as I threaten to terminate the diet.....we haven't had a status in almost 6 months, and whatever seizures she does have aren't half as strong as the ones before the diet (if you can even believe that)!

D.....I know I'm being a baby about the Zonegran, but after our experience on Depakote, I'm not looking forward to zombieville. Although I did tell Dr. G I'll be looking forward to some much needed sleep (and..he didn't laugh) *LOL* Maybe the thinks I'm a psycho. Actually I'm pretty sure he does.

In fact, he actually gave me a time limit???? After our discussion, we wants me to decide before the end of the week (as we have an upcoming appt., and he wants us to be in process by then).

baby trevor's mommy said...

lol...yeah from our brief convo he didn't strike me as the yuk it up type! Are Depo & Zon in the same family? I have no clue...I should...but I don't. And you're not me. *smile*

Anonymous said...

Well when she goes to school you will feel at ease because she can say diarrhea and shut up very clearly!!!!!!!!!!!

Sophie's Story by Elaine said... completely put me to shame. I just had Sophie's first IEP last week and I was nowhere near as prepared as you were. I am so glad to read that your school district is being so supportive. This upcoming week is going to be Sophie's last week of EI therapy. I am incredibly sad to have to say goodbye to Sophie's therapist who have been working with her for so long. But I am so excited for her to start preschool. Wasn't the meeting incredibly exhausting have to discuss every aspect of your daughter!!! As I left the meeting, I passed by a Mexican restaurant and was very tempted to go have myself a margarita.

By the way, we are right there with you...trying to figure out if Sophie is a surgical candidate. We are going to Detroit in a week and should know by then.

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.