Out of the hospital
Maria got out this afternoon and is happy to be home. She was getting quite cranky in the hospital but they wanted to wait on the results of the biopsies before releasing her. They all looked fine. In particular, the lipid test came back normal which indicates she has probably not been aspirating.
A couple of notes about her seizures. Some of the facts and statistics come from epilepsy.com which is a pretty decent site. All the articles are edited by MDs so are likely to be accurate, unlike some of the stuff you find on the Internet.
Maria’s diagnosis is “symptomatic epilepsy”. As I suspected, “epilepsy” is a generic term for anyone who has had two or more seizures that weren’t provoked by events like low blood sugar or fever. It isn’t so much a condition by itself but rather a description of symptoms. Often children outgrow seizures, however the doctor thought it was unlikely in Maria’s case. We aren’t going to use “the e-word” since there is so much myth and controversy around it and it isn’t any more accurate than just saying “seizures”. I mention it here only for Google’s benefit since part of the reason for this blog is as an information resource for other people taking care of special needs kids.
Cathy mentioned SUDEP in her email and I looked it up. That means Sudden Unexplained Death in EPilepsy and refers to the fact that sometimes people with seizures die for no reason - that whole “her heart could stop” thing I mentioned before. It’s very rare (roughly 1 in 3,000 per year for all people with epilepsy) and even rarer in children. It’s kind of like SIDS in that the doctors don’t really understand what happens. Basically, it’s not something we should lose sleep over, though I think I’ll reactivate my CPR certification.
Children with seizures can sometimes be helped with a ketogenic diet, a diet high in fat and low in carbohydrates. It’s a complicated diet that really needs to be administered in consultation with a dietician. Cathy remembers them mentioning a dietician but it got lost in the noise.
At this point we are still a little confused about the seizures. In particular, we aren’t sure if they were saying the gagging thing was seizure related, whether she was having the staring seizures the neurologist suspected, or both.
Cathy had been thinking about changing neurologists after the last “let’s do a tracheotomy” visit, but she’s now thinking this would be a bad time to do so. She’ll take Maria back to the old neurologist for a followup and I’ll be sure to go along. That should be within the next few weeks after the drug has had time to settle into her system.
A couple of important side effects of the Trileptal are low blood sodium levels and an acne-like rash. The good news is I’ve found several cases of people whose kids made large jumps in communication and development while taking it. It sort of clears the cobwebs and allows them to learn more effectively. There were also mentions that kids became more verbal while taking it, which we’ve definitely seen in Maria.
The audiologist sent us a six-page report of Maria’s hearing condition, how it relates to other hearing loss, how the cochlear implant works, why we should consider it, and so on. It was a very nice document that she sent at 1 am (!). We are less resistant to the idea than before, particularly since it would leave one ear untouched so that Maria still has the opportunity to gain natural hearing in that ear. They have also apparently made substantial technological advances in the two years since we last considered it, so cochlear implants have a much higher success rate in auditory neuropathy than in the past. However, as Cathy puts it, we hate to put another hole in Maria’s head.
We’ve also wondered how all of this (seizures, drugs, cochlear implant) will affect school.
Most of the drama is over now and we are just figuring out how to integrate this fun new problem - oops I mean “opportunity” - into our lives.