Going in to the appointment, I didn't know how much background Dr. Taft would have about Ryan's history. When he walked in, he introduced himself, glanced at Ryan and immediately said, "I've been reading up on Ryan and he looks better than I was expecting." Alright!!! He had apparently spent some time reading through his records and had a basic history of what we were dealing with. He said that Ryan's head control was good and his muscle control was better than what he thought he would see. He also said that his color was good.
He explained more about what he called Ryan's "migrational defect". That's what is going on with the abnormal MRI and the issue with Ryan's brain. As I've mentioned before, this migrational defect and infantile spasms is a totally different and unrelated issue from Ryan's prematurity. This defect happened in utero, when his cells were forming and multiplying. In his brain, his cells somehow didn't migrate where they were supposed to, which is affecting his development. Basically, now the cells are looking around for other cells and when those cells aren't there where they're supposed to be, his brain freaks out and causes a seizure. That's how he described it to the best of my knowledge/memory. I hope I didn't butcher that explanation since it's been 2 weeks since he said it and I'm trying to recall everything.
He said that he's seen kids with migrational defects that are much worse off than Ryan. Some of them can't move at all. He felt pretty optimistic about Ryan. He said he thought that Ryan might be able to walk and things like that at some point. He also mentioned that 90% of kids with these migrational defects have ongoing seizures, even after they outgrow infantile spasms. See, everyone with infantile spasms grows out of them because they only affect babies that 2 years old or younger, so just by virtue of just getting older, these IS kids grow out of it. I can just continue to hope and pray all the time that Ryan will be in that elusive group of 10% that don't have to deal with seizures in the future, post-IS.
I asked whether it was out of the realm of possibility that Ryan might possibly go to a regular school someday. He said that he, of course, didn't know but that it could possibly happen. He said that if Ryan did end up in regular school, he would no doubt need some special education. I just think it would be so special if Ryan could go to school with his brothers!
Another answer we got during this appointment is one about genetics. Dr. Hunnicutt ordered genetic testing months ago and each time I would ask about it, the results weren't back yet. Finally, they got some results. It was good news. The wide net genetic test came back normal. It's good because if Ryan does meet someone special one day and get married, these genetic tests will play a part in their decision to have kids and so getting normal test results is great news. I was wondering if it was better to have some definite answers come back through this test - something that we could put a name with, something that I could research and learn everything possible about, and have a better view of what Ryan's future would look like - but it's decidedly better to have normal results! The epilepsy panel results, the other genetic test that was ordered, still have not come back.
Dr. Taft asked me whether Ryan coughs sometimes while eating and I answered in the affirmative. He suggested that we get a swallow study just to make sure that he was eating correctly and everything was going down as it is supposed to. He mentioned that if Ryan isn't swallowing correctly, it could lead to pneumonia, which would set him back quite a ways with his developmental progress. I told Dr. Taft that I assumed that it was reflux when he would cough, and he said it very well may be just a reflux thing. We both agreed that we should get the swallow study done, just to check it out and make sure everything is working as it should. My motto when it comes to the boys: better safe than sorry! So the neurology group made the referral for us and our OT did the evaluation when she was here last week. We have our swallow study appointment set for this Friday.
One of the main topics that I wanted to discuss with Dr. Taft was the question of whether we needed to see one of the big-time, world renowned Infantile Spasms specialists. Within the IS chat groups, there are quite a few doctors that are well known and very good at treating IS. Ever since Ryan was diagnosed, we've been debating whether we needed to go in that direction. Our debate is that there is an expense to fly to wherever and it's not the easiest thing to travel with three (or even one) infants, especially if it won't really make a difference in his treatment. Ultimately we want to do anything and everything we can to give Ryan every opportunity to be the best he can possibly be. I've talked to our pediatrician, our occupational therapist, our other neuro - Dr. Hunnicutt, and our family members. I wanted to get Dr. Taft's opinion as well. He said right now he would not recommend for us to make the trip to see a specialist, that he doesn't think it's needed. Dr. Taft made a good point. At this time in his treatment, Ryan does not currently have on-going spasms. His steroid treatments have worked and he has responded well. He's moving in the right direction developmentally. He's doing really well overall. Based on all these things, the specialist would probably wonder what we are doing there. If any of these things were different, it would make more sense to see a specialist. After he talked through that, I agreed with him. He said that he understood that from a parent's perspective, it helps to get a second opinion and to hear that we're on the right track. He said that if we, as parents, needed that affirmation, he would help to steer us in the right direction. He also said that he thinks second opinions are a great idea and if at any point he thinks we should get one, he will be the first person to bring it up. It helped to set my mind at ease and to finally not feel so torn about what to do. Right now we are going to pass on taking a trip to see a specialist, but will keep it in mind if we feel that we need it or that Ryan needs some better, or different, care.
Ryan is done with his steroid medications as of last Wednesday. We don't have another EEG set until November. In the meantime, I will pay close attention to make sure I don't see anything that looks like a spasm or another seizure. If I notice anything unusual or suspicious, I will call them and set up another appointment. Dr. Taft said that if Ryan does start having seizures, our first course of action will be to up his dose of Topamax that he's already taking twice a day.
Some recent photos of my very special, very sweet and very handsome boy. My Ryan Thomas Peery.
ah! that smile - I can't get enough.
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