Wednesday, July 24, 2013

What Makes One Who They Are?

When Umberto had his first seizure, we had a bit of wait until we had to make the decision about medication. At the time, the protocol was to wait until there was a second "incident" before starting one on treatment. So even though Umberto had shown seizure activity on his EEG, we settled in for a wait. During that time, I eased and worsened my anxiety by researching the medications used as anticonvulsants. The most common drug was Depakene and the side effects terrified me because many of them were things that would change one's personality. Depression, aggressiveness, hostility, irritability. Looking at my sweet, good-natured son as he played with his sisters, built beautiful things with his Legos, leaned against me as I read to him, it was difficult to comprehend him becoming a different person. I began to wish for no more seizures not just for the sake of him not having them but so that I wouldn't be forced to have decide if it was worth risking the son I knew to stop his seizures.

Then Umberto had his second seizure. We were much calmer this time around during the event but inside I was a mess. Now was the moment of truth. Of course his neurologist prescribed Depakene right away. I was frustrated and insisted on a visit with the Dr. before we began medication. After much calling I find got an appointment and I began to do even more research, to reach out on forums. I was determined to try anything but Depakene especially after a friend told me her son almost went into liver failure on it. I hit upon Zonegran which didn't come without it's own list of horrible side effects. However those on it reported less of a personality shift. Our neurologist agreed to try it, and for the next two years it worked for the most part.

And then after a 48 hour ambulatory EEG, we discovered that Umberto was still having seizure activity and it was recommended that we switch to Depakene. And what could I do? My son was still having seizures. He was nearing the age when driving would be a big deal. His concentration could be effected as he was still having absence seizures. And research was showing that epilepsy left uncontrolled could lead to long lasting effects and even death. When faced with the choice, I felt that I had to risk changing my son in order to make him healthy. But if I am utterly honest it was also to help learn with a bit more ease. I had seen how hard learning was for my brother who had undiagnosed absence seizures (he was diagnosed as an adult) and that difficulty has sadly colored much of his life. If I could give Umberto that bit of an edge, I felt it would be irresponsible not to.

Two years in and while Umberto has changed I don't know how much can be attributed to him being 13, and how much can be laid at the foot of his medication. He doesn't have many visually noticeable seizures and his concentration has gotten better. But sometimes I wonder who he would be if the drugs were not a factor. But I can't know. It's an endless road to wander upon and most nights I'm too busy with other thoughts to run along that trail.

Now I find myself pondering a phantom. You see, researchers have figured out how to "shut down" the extra chromosome found in the 21st Trisomy.  The community is a buzz with speculation. There are those who feel that this could give people with Ds a cognitive edge and that we should jump on that with all that we have. There are others who fear that eventually there will a be a "cure" for Down syndrome and they don't want this. It's incredibly messy and complicated. There are so many emotions involved, and it's hard to dismiss any one families opinion because our experiences are often so different. I have been very quiet about this as I struggled to sort through my feelings, and even now I feel like this is a rather dull, wandering post because I am confused and conflicted.

For me Jude is quite perfect as is. I have no clue what her IQ will be as she grows older, and I'll be frank that it's not something I worry about. I am all to aware of the problems with IQ tests, and with Western values of knowledge. But if I am quite honest, I do have an inkling that this will be a battle for us. I live after all in a society that places great value on very limited definitions of what constitutes intelligence. Sometimes I worry that my children will resent the unschooling. That they will resent our struggle to show them different ways of thinking and being in the world. Of course I worry that if a gene therapy came out that could some up Jude's cognitive ability and that I don't jump on it that she will feel resentful as she grows older. It's one thing to say "Well I'll let her make her decision when she's and adult" and then to have to wonder if it will be too late for her when that time comes.

Right now I don't feel like Jude needs to be cured from anything. She is not sick. She does not have a disease. If this research could be used to help with physical health issues, I am very excited about it. I would not refuse a chance to cure Alzheimer's disease or to have a better way to treat thyroid disorders. But it's easy to say "I'd treat the physical stuff." It's the other stuff that becomes more complicated, I think. And even though I faced a somewhat similar dilemma with Umberto it was different in that Umberto has a physical medical problem that needed to be treated. His cognitive issues were corrected as part and partial of the physical seizures.

I don't have any easy answers, and this post is one of the many that I have half thought out as I try to sort through all the complicated issues that arise when faced with this kind of science. I hope, dear readers, that you bear with me and stick out the journey. These conversations are hard but I think ultimately worth inspecting.


Crystal Rhew Staley said...

It's tough for sure. Like you, I still feel a bit conflicted about the whole thing. Would 'curing' my son's Down syndrome make my son a totally different person? I just don't know. Defintely worth thinking about though.

Sue Adelman said...

It is very complicated. Our daughter is 16 and has DS. At the medical roundtable in Denver (at the nation conference) they talked about the brain chemistry stuff... If I could give Dev a pill that would decrease/increase certain neurotransmitters resulting in faster synapses, potentially making learning easier... reminds me of ADD/HD treatment... and mistreatment.. overuse/miss use... There are so many unknowns, so many pitfalls, yet so many potential good things too.
I do think research is needed and oversight is necessary.. Lots to figure out

Diane Hill said...

Two months ago I would have been ecstatic about that article. That's all I fix it. When I read this last week I actually got kind of sad. I was sad because I didn't want to "cure" my son. We are where we are today because of him. I actually was surprised with myself. It's such a touchy subject.