Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, November 17, 2009

Neurology Update

It's a good thing Angela's neurologist's office does a reminder call a couple days before your appointment. I didn't even realize we had one scheduled for today until they did. (probably because I didn't have my blackberry with me when I scheduled it, so it just never got written down.)


A couple months ago we tried dropping one of Angela's meds, and it didn't go so well, so we put her back on it. When I mentioned that to the neuro today he kind of chuckled and said something to the effect of "Yeah, that doesn't usually go well with that drug."

The seizure med Angela is on (Depakote) combined with Risperdal has caused her to gain a lot of weight. It's funny, because 4 years ago, when Angela was very UNDERweight, our developmental ped said, "She probably always will be. It seems most kids with DS are either under or over weight, with no middle ground. There are some, but not very many." Just a couple months later we added Risperdal, and within weeks Angela had gained....are you read?....23 pounds! In the past 4 years she has gained 65 pounds. That is alot of weight for one little kid to gain. On the DS growth chart this puts her at 50% for height, but 80% for weight.

So, one of the things the neuro mentioned today was changing her seizure meds. She's gained additional weight (around 5 pounds) but she hasn't gotten any taller. He suggested we change her seizure meds for Topamax. It usually 1) controls seizures 2) Can help with aggression 3) helps with headaches 4) weight loss. He said some kids loose 5-10 pounds on it. That would put Angela at a really nice weight.

The only drawback is some kids can get really "spacey" on this drug. We have no idea if Angela will unless we try it, and then we'll have to see if she's TOO spacey, or if it's tolerable.

Now we start the several week process of adding the new drug and dropping the old. Just in time for Boston. How does it always work out this way?

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