Tuesday, February 12, 2008

Seiures and ADHD

My son, Joey, was diagnosed with ADHD in first grade. He was a struggling learner and had a hard time paying attention, so we weren't surprised. And his father was diagnosed with ADHD, so if it was hereditary - then we figured it was passed down. Joey's also never been a sleeper. His nurse would tell you that it's my fault because I woke him up at 3 in the morning to see him the night he was born. He was born on 2/16 at 10:16 weighing 8lbs 15 oz. His pop pop said to throw him back he wasn't a 9 pounder. But when Joey was born, he was also a bit blue and full of gunk. They took him to clear him. Plus, it was a natural birth and I needed some attention. I didn't get to hold Joey and was quite upset about it. So I kept asking for him. The nurse told me he'd never sleep through the night and it was my fault for setting the precedent.
So in 2006 when he was diagnosed with absent seizures that primarily took place during his sleep and explained some of his behavior and his lack of quality sleep, I felt the burden lift. We knew the problem.
The nice thing was my first insurance covered all of it. So the testing was fine and the medicine was manageable.
Now my insurance has changed and it's getting expensive. That's not what this blog is about though. It's about the fact that we are still left wondering as to what's going on with Joey.

He was changed to Focalin last year and his grades improved. He was finally getting on grade level and was able to comprehend things. We were thrilled. But then he started getting aggressive and that's not good. And his sleeplessness was coming back. The Clonidine wasn't helping. So they ordered another sleep study. Those are expensive, but I figured it would be worth it if we found out what was going on.

His Depakote, for seizures, was upped. He was prescribed Vyvanse, a pro-drug, for ADHD.

He wasn't as aggressive, but his grades flatlined. He's failing again and can't remember simple things like 2+2 or what he did for his birthday last year. He remembers Joe, Josh and Jay from 3 years before, but not last year. Can't remember the title of the book we had been reading or what happened in the chapter the night before. And then school started reporting to me that he was having a loss of bowel movements, sleeping in class, waking up dizzy and disoriented. Staring off into space for longer periods of time, confused about where he was, and then walking like he was drunk. Last week he totally fell asleep, but was clenching his fists and drooling. I had to carry him out to my car he was so out of it. Today his school called because he fell asleep, fell out of his chair, hit the ground so hard the teacher from the next room came running over to make sure all was okay - and he never woke. He slept from 6:30-9 last night and then 10 PM until this morning.He should not have been tired.

So we have another sleep study scheduled for later this month. I hope it reveals something for us so we can help him.

But here's something else I found out. Focalin's prescription paper from the pharmacist says not to administer with Clonidine or Depakote. It even says that it should not be administered to children with abnormal EEG's and are prone to seizures because it can actually increase seizure activity. Vyvanse's paperwork that came from the company never mentioned seizures as a side effect. But guess what? On the detailed sheet that's not so pronounced on their website and on the pharmacy sheet my mom was reading on Friday night, it says the same thing. Do not give to children like Joey. I called my cousin, a research pharmacist, and he said the same thing. CVS's website (Caremark) says the same thing. My doctor said that it was an old warning and they are okay to prescribe together. Who do I believe? The doctor or the druggists? (And the druggists didn't catch this. They gave me the paperwork, it was my responsibility to read it and check with my doctor.)

I did call Vyvanse and report it to the nurse who has to record all information for the FDA. What good will it be? I don't know. But in all honesty - I'm at a loss. Joey is no where near the desperate case of some- but he shouldn't have to be going through this. He's never going to be ready for third grade at this rate, and I don't know how much more of the antics he's been displaying lately I can take. Discipline is hard, and getting harder. We have to be careful not to discipline the medical issues, but sometimes it's hard to tell what is a true behavior issue.

His teacher has been patient. I've been blessed with his teachers at Pine Grove. They truly are an A school and I'm glad we're there. And his music teachers are making sure he continues in guitar since that's a time period he seems to calm down in and can focus. I have many blessings. It's time for Joey to get the one he needs with answers to his issues.

It's 11:43 and he's wide awake and hungry. Time to go deal.

1 comment:

Tim said...

Danielle, I am so sorry your son has to go through this. My youngest daughter was diagnosed as bi-polar, then not bi-polar, then bi-polar again. We've been through many medications and unbelievable behavior patterns. Now that she's older, the problem seems to be normalizing.

As for guitar, is it just a coincidence that your son calms down in the period he has music? Would soft, instrumental music in the classroom (or his iPod) help him at other times of the day?

Again, my thoughts and prayers are with you and your family as you continue to research the solutions to this situation.