Against doctor's orders

It was almost exactly one year ago when Nate was diagnosed with epilepsy. The e-word still makes me cringe, but that's what it is. He was having staring spells at school, which led to an EEG, which did not show an actual seizure but did show "sparks" of seizure activity every few *seconds.* If not for the EEG, I would not have believed he was really having seizures, because when I would say his name, he would come right back out of it. It wasn't causing any damage, but they told me constant zoning out would cause delays, and we certainly didn't want that.

So the plan was to put him on medication for a minimum of two years, then we'd do another EEG, but no one gave us any hope that Nate would grow out of this. We first tried Keppra, and it made Nate pure evil. It was bad. After 6 weeks, we switched to Topomax, which didn't result in any side effects, but the problem was that it came in sprinkle caps. So we had to sprinkle this stuff in some pudding or yogurt twice a day. But Nate has some texture issues, and plus this medicine tasted bad, so every day, twice a day, we had a major battle. Sometimes we would be open about putting it in his food, but then he wouldn't eat it at all. Sometimes we would try hiding it, but he would taste it. And he started questioning everything I gave him to eat, lol. "Are there sprinkles in this peanut butter sandwich?" (Usually there were.) There were a lot of tantrums and a lot of missed doses.

At his 6 month follow up, I reported that Nate had not been having seizures that I could tell (but honestly, I could never tell), but I wanted to know if there was a liquid form of Topomax. I explained the issue. She wrote a prescription for a liquid form, which the pharmacy would have to mix for us every 2 weeks. No problem. Those first two weeks were blissful. Nate would take it by liquid no problem. The next time we went to pick up the prescription, they told us that our Medicaid denied paying for it because it was expensive and contained over the counter ingredients. So that would mean we were paying $80/month for this liquid medicine.

After those 2 weeks without battles, we really did not want to go back to sprinkle caps. We gave it a half-hearted try, and we ended up forgetting (by accident or on purpose) to give it to him at least once a day. But there were no staring spells. Finally I decided that the benefits of taking the medicine (fewer staring spells--even though we hadn't seen a staring spell in forever) did not outweigh to twice a day battle to get the medicine down his throat. So I stopped giving it to him. (Eek!)

Now, I do not condone my behavior in any way, lol. I can't think of more than a couple times I have actually gone against doctors orders for Nate. But in this case, I really felt like he didn't need the medicine. So I gave it a shot. And everything was fine. Four months later, everything is fine. His teachers have not seen one staring spell, and neither have we at home.

So, today was his neurologist check up. (Dun Dun Dunnnnn) I really was not looking forward to reporting my negligence. Dr. Farber is a very nice man who always wears a bow tie. He asked me how things were going, and I said, "I really don't want to tell you this, but I weaned Nate off of his medication." Hmm, I was right. He didn't like it. He understood my reasons, even if he disagreed. At some points, he was using a tone of voice one might use with one of those unreasonable combative moms. :) He asked if I would at least agree to doing another EEG. I told him that was fine, I really don't have anything against medication or any kind of interventions--just this particular medication was not working for us.

So we scheduled an EEG for March 16. Dr. Farber said if it comes back normal or even just slightly abnormal, we'll forget the medication. (Even though they have a pretty strict rule that every kid is on medication for at least 2 years, regardless of clean EEG.) But if it comes back like it did last year, he's going back on medication. We can try a different kind of medication that comes in liquid form, such as Trileptal. We did not try this before because of the side effect of weight gain, which would not be good for Nate's mobility, but he said we could try it and see what happened. So, an EEG it is. Let's all pray it comes back normal! How awesome would that be!

Sidenote: I am always amused at Nate's various non-SB specialists. They always want to talk about the fetal surgery and the Spina Bifida, and they always want to see Nate's feet! Like, his pulmonologist (lung doctor) once asked to see his feet. :) Well, Dr. Farber saw his feet last time, so this time he just asked Nate to run up and down the hallway so he could watch him. Does this have something to do with neurology? I guess so. Does it have anything to do with seizures? I'm pretty sure it does not. I don't mind showing off my little pride and joy though.

Nate's doctor appointment turned into a little Mommy and Son date this morning, and it was nice to be able to spend some time with just him for a change. I dropped Georgia off at the sitter's and took Nate to work with me. He was pretty good except he kept sneaking in the bathroom to play with water in the sink. There were plenty of toys there, but I finally found one he was interested in--a Connect 4 game. Then we went to his appointment, and the highlight for him was getting to run in all the long hallways. He was an angel during the appointment, then I drove him to school, where he was just a few minutes late, and sat with him during lunch. We had lots of good conversation.

I just really like that kid. Love him too.