Verse of the Day!

Tuesday, June 21, 2005


Sorry it took a while to get this out here. We got home and I had to watch the Baylor game, which I had taped. I worked hard to avoid hearing the outcome, which is also why I didn't call some people I should have. What a game, though! But, what happened to Trey Taylor? Hopefully, we'll keep going and he'll have another chance, because he certainly has the ability.

Anyway, between watching the game and being tired, neither of us felt like posting. So here goes...

All in all, we had a great trip yesterday. Dr. R was great. We felt very comfortable with him and he definitely took time with us to talk to us and Harry. Harry did fine for his EEG and following, but once we got to Dr. R's office, his tiredness definitely started to show. We got called back fairly quickly and they did height/weight/BP and got us in an examining room. About this time, Harry started going crazy. He was climbing on everything, doing his "muscle kid" thing, trying to turn the lights off, running around the room, etc. If we tried to hold him, he tried his hardest to get away from us.

Dr. R was in by 2:30, at the latest, and Harry kept up his act. Dr. R did a very thorough "interview" about what's been going on and about our medical history, probably about 30 minutes. We reassured him several times that Harry didn't normally act like this. He pointed out that we had learned the value of sleep on this trip.

He then spent another 30 minutes (or so) doing a very thorough exam of Harry. I guess this gave Harry something to do, because he settled down for this and cooperated very well for this. Dr. R poked, he tickled, he put a "buzzing" tuning fork on Harry, tested muscles, balance, reflex and I don't remember what else, but it took a long time! He also tested his cognitive ability, with some questions and had Harry read a little bit.

Then Dr. R spent another 30 minutes (or longer) with The Mom & Dad. (Yes, that's right, we were there until 4, and we were with Dr. R for at least 1.5 hours.) I had gone to get a blanket for Harry because he wanted to lie down on the examining table. When Dr. R started showing us printouts of the EEG and explaining, I think it bored Harry to sleep. It actually worked out well, as this gave us uninterrupted time to talk to Dr. R.

(I realize this has gotten very long, but I'm almost done.)

We basically got the same diagnosis from Dr. R- complex partial seizures with secondary generalization. However, we felt much more comfortable hearing this diagnosis this time. Perhaps because it was the second time we had heard it, but I think it was the fact that we really felt like Dr. R had taken the time to look closely at the EEG and had done a much, much more thorough exam of Harry. He also deals with kids exclusively, so he has a better idea of what to expect from kids.

We also felt like Dr. R had a plan for Harry and his medication, rather than just throwing different things at him to see what worked. We are going to continue with Depakote, though we will change the dosing. Dr. R thinks that Harry is continuing to have these "breakthrough" seizures and smaller incidents because the level of medicine is not consistent throughout the day. So, he wants to put Harry on Depakote ER (extended release), which is designed to release the medicine over time and keep a more consistent level. Hopefully, this will knock things down and keep Harry seizure-free.

The only problem with this is that the pill (250 mg)-

is approximately the size of a small watermelon. We will have to train Harry to swallow something that big, since it can't be broken or crushed. Dr. R suggested that we start getting Harry to swallow mini M&M's and work our way up to peanut M&M's. I'll try to get The Mom to learn along with him. She has to break a tylenol in half to swallow it, so maybe she can be trained, too.

We will go back to Dallas in August for a follow up, then Christmas time, we will go again and have an EEG at that point. Assuming we can get things under control, we'll go about every six months. Dr. R said there is a 70%-80% chance that Harry will outgrow this, so keep praying that Harry can quit taking this medication at some point in the future.

Well, I've said enough. I'm sure The Mom will post later and fill in the holes. Thanks for reading!


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