Monday, April 19, 2010

New Neuro, New Meds

I can't believe it's been 2 months since I updates, time has FLOWN by. Lots of changes and news.

First off, Joey's seizures. We started the valproic acid, Joey took it for about a month and at our follow up appointment with our pediatrician it was decided to wean him off prior to his appointment with the neurologist. It wasn't making much of a difference, he was still having at least one or two seizures a day. The pediatrician wasn't comfortable increasing the dose or changing medications....I brought the videos of the seizures with me to the appointment, and while he is sure it's some sort of "neurological event" that Joey is experiencing he said they weren't common seizures and wanted the neurologist to decide where to go from here. So we discontinued the medication and by the time we met with Dr. M at Sick Kids last week he had been off the medication for about 2 weeks.

Dr. M is the neurologist we met with a few times a couple of years ago when Joey was originally diagnosed with Angelman Syndrome. Once it was determined that Joey didn't actually have AS, and at the time he wasn't experiencing seizures, Dr. M said there was no reason for Joey to remain his patient because his specialty was AS and seizures. From there we have met with numerous neurologists, none of whom we really connected with (to put it nicely!). Now that Joey is having seizures I requested that we see Dr. M again and now he will be our neurologist for good, which makes us very happy as he is a wonderful man.

We met with Dr. M last Wednesday. We showed him the video of Joey's seizures, he thinks they are "complex partial" seizures, rather than "atonic". He has prescribed another med, Trileptal, which is another class of medication and is prescribed specifically for this type of seizure (and various mental illnesses, including depression and bi-polar disorder) so we're hopeful this will put an end to the seizures. Whiel the seizures themselves are short and do not in an of themselves cause any harm to Joey, he does lose most of his muscle control which can cause him to fall. I don't want him to start falling while he's learning to walk! We will have a follow up at with Dr. M in 2 months, along with another EEG at Sick Kids under sedation to hopefully get a better idea of what is going on.

In other Joey news, I am pleased to say that he is eating better than ever before! While it's still mostly purees and baby foods he is eating up to 80 calories in a meal, which is amazing for him. He is eating a lot of things he previously refused, like green beans, peas and cereals. Starting this week we are going to experiment with his prescool snack. I've been sending chocolate pudding for his snack, because it's easy and it's guaranteed Joey will eat it. Often I would pack something else, like a yogurt or fruit, but of course he was refusing it because he knew the chocolate pudding wasn't far behind. Since he is eating such huge breakfasts now I think it's safe to start sending fruit or yogurt and NO pudding...if he doesn't eat his snack it's not the end of the world, he has lunch an hour later. We'll see how this goes!

This week the special education teacher from the school Joey will be attending next year will be coming to observe him at preschool. This is in preparation for our big meeting at the school on May 11th, where we will be getting together with the teacher, the principal and all of Joey's therpaists to discuss his transition to junior kindergarten in September. ~sniff sniff~ I am a little sad that Joey is going to be starting school, a little nervous about how he will cope with such a huge transition and also really excited for his world to be expanded so much. He has made such huge progress attending preschool for just 5 hours a week, I am eagerly anticipating huge leaps when he's attending school 8 hours a day, 5 days a week.

Last month we braved the drive to Florida with both kids, taking 3 days to get down there. While the kids were AMAZING (no whining or crying at all!) that's because we stopped a lot and spent 2 nights in hotels on the way down. The boys and I ended up staying an extra week with Gramma Phyllis and Papa Roy and Jason drove back on his own. I flew back with the boys, and while most everyone was very helpful I don't think I will do that again until one of them is walking and can understand simple directions. It was exhausting! But well worth it, 2 weeks in Florida was a great treat. I'll post photos soon.

- P, J, J & B

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