Not What I Was Expecting

Will had a neurology appointment this afternoon. He had an 8 hour video EEG back in April because he was still having seizures despite a fairly high dose of Keppra and hadn't had an EEG since December 2007. So, we had one, and it was abnormal. His first one was as well. He is having subclinical seizures. For those of you who aren't familiar with medical terms, it means that even when we can't see physical symptoms of seizures, his brain is still having seizure activity. It's not constant, but it is frequent. Don't misunderstand, Will is also having clinical seizures (ones we can see), but since the last medication increase about 3 weeks ago, they have gotten better. But they have not stopped completely. Anyway, today at the doctor, she was pretty concerned that his EEG was still abnormal and that he is still having seizures on such a high dose of medicine. In fact, she said she probably wouldn't have even gone that high on this medicine, but her partner did. He doesn't seem to be having any ill-effects from it. So then she examined him, and it got worse. His reflexes in his legs are more brisk than they have been before. They're actually pretty brisk. For those of you in medicine, they're at least a 3+ if not a 4+. She also illicited clonus in both legs, more beats in one leg than the other, but I can't remember which.All of these are neurological changes that are abnormal. In and of themselves they are worrisome, but add that to the fact that there is a questionable cyst on his lower spine, and it's pretty scary. Will has been seen by neurosurgery a few times for the cyst and has had a few MRIs to watch it. The last MRI showed that it was stable and that it may actually just be that his spinal cord is wider at that point than normal and not actually a cyst. This was good news. We were supposed to have one more MRI in March and see the neurosurgeon again. If everything was stable or improved, we would be discharged. Well, the appointments got cancelled because the neurosurgeon was leaving...but not until the end of June. So why was his appointment for March cancelled you may ask? I have no idea. Well, today Will's neurologist said she wanted Will to get back in with this neurosurgeon before he leaves because this needs to be addressed. This, and the fact that Will is becoming tighter in his heel cords too. He's getting tighter in his feet, ankles, and lower leg. Also not good. His physical therapist at school was the first one to notice, and I'm glad she did. So, neurosurgery is referral number one. Now, onto a different neurologist. Because Will continues to have seizures and an abnormal EEG despite a good deal of medicine, his doctor wants him to see an epileptologist. This is a neurologist who specializes in epilepsy. She's hoping that this doctor will be able to recommend any further testing that needs to be done to figure out why he's still having so much trouble and any medication changes that might help. Referral number two. Finally, she says Will should see one of the geneticists here at Children's. He has had a genetics work-up before, but because his diagnosis of Angelman is clinical and he is having all these neurological issues, she wants a different doc to take a look at him and see if there is any other testing that needs to be done or any other diagnoses to consider. Now, this is referral number three. I'm sure you all realize this, but when you take your child to a specialist for an appointment, and she wants to send your child to three more specialists, that's not a good sign. I'm not sure when all of these appointments will occur. I'm assuming the neurosurgery appointment will be within the month since that doctor is supposed to be leaving at the end of the month. A perk of being a doctor is that I can get in a little quicker, well, sometimes. The neurologist spoke with the geneticist who said for me to email or call him and we'd set it up whenever was good for me. I don't know when the epileptologist appointment will be. I think within a few months (or at least I hope) because we usually have to increase his medicine every 3-5 months (at least we have over the last year or two). Anyway, that's what happened at the doctor today. I hope it's clear. If you have questions, feel free to ask, and I'll try to answer them. I do ask that anyone who is willing pray for Will. Pray that whatever is going on won't require any major interventions like surgery on the spine. But regardless of what happens, we know God has Will in his hands and that He has a plan for all of this. It's a little scary not to be in control, but it's pretty great that God is. So, to leave you with a smile on your face, here is a picture of the cutest little guy on the planet (with his beautiful little sister)!