Jack's Peanut: Memory Monday (Changes) 1/11/11

Tuesday, January 11, 2011

Sorry for not posting yesterday but I was exhausted from our trip. It was the first time I went to Houston and didn't feel let down. The nurse practitioner that saw him was very nice and open this time. She's usually pretty standoffish. She came up with a few hypotheses for Jackson having more seizures.

The diet is not going to work for him - I think that it is working and told her this because his seizures did decrease.
When we added Baclofen it pushed him over his carbohydrate allotment
His weight had decreased so that could be a factor
So here are the possible changes that we could make.
Increase his ratio to 4.5:1
Start weaning Keppra - I suggested this and she agreed that if it wasn't working then he doesn't need it.
Increase his calories

She wanted him to have labs drawn to check his blood ketones, since his urine ketones had been low. If they are also low then we may increase his ratio but that is on hold for now. First, we are going to increase his calories and start the Keppra wean. We started all of this today. So far so good. I am to call her in a week and let her know how the wean is going and then we will cut another dose in half.

Then we went to the lab and he didn't even cry when they stuck him. What a brave little man! Hopefully, I will be getting a call tomorrow to let me know his blood ketones.

Now let me talk about the little man. He was an angel yesterday. He only made cute little noises on the way there and stayed awake the entire trip. He didn't fuse the entire day and was pretty happy. This for Jackson is awesome. We never know what kind of mood he will be in and it's always nice when he cooperates!

Waiting on the doc in Houston.
Notice the bump over his eye?

So overall the trip was a success. We just have to wait and see if the changes we are making will make a difference.

Last night was a different story. He took a late nap because he didn't nap all day. Then he decided that all he wanted was to be held. It was unacceptable to being laying down and sitting on his own. I guess he was making up for being good all day. He finally fell asleep at 1:30 this morning and I got a little sleep.

Today when his nurse got here I decided to call the doctor about the cyst like bump on his eyebrow. Since his pediatrician only sees patients on Monday I didn't expect to see him but we could get in today so off we went. When the doctor came in I wasn't impressed in the least bit. After 20 minutes of her babbling she gave him some cream to put on it. I'm going to call to see his pediatrician next week. What a waste of time. Maybe the cream will work but I doubt it.

After two days of traveling and doctor appointment I am so worn out. Hopefully he will let me sleep tonight!