Soren had his 6 month check-up on Thursday. Aaron and I both went to the appointment and we had quite a list of things to talk about.
We've been wanting Soren to get another MRI and EEG/video-telemetry. With the latter, they do a regular EEG, but it lasts at least 3 days. They also video tape it so that when he has a seizure, they see what it looks like on the outside as well as the inside. The reason we want this is that Soren's seizures have changed in nature, getting more frequent and strong. I actually did a summary of Soren's seizures the past year and, when you boil it down like that, things haven't been going so well. Soren was seizure-free of Infantile Spasms and Tonic-Clonics for a year when he was on Zonegran and Lamictal.
Then last March-May, we weaned him from Zonegran. The good thing about doing this is that Soren became more alert and started turning to his sides. The bad thing (which I didn't really realize until doing this summary) was that the Tonic seizures came back in June and the Tonic-Clonics soon followed. But now with the GFCF diet, the seizures seem to be decreasing. And that's better than adding another drug.
Our hope in doing this testing is that something is discovered that makes Soren a surgical candidate. Yes, I'm saying that we are actually hoping to find something in our son's head that they can cut out and remove. Surgery is, unfortunately, the only known "cure" for Epilepsy. The rest-drugs, diet, voodoo-are just bandaids.
I had asked Dr. Shields about doing these tests again at our previous appointment and he didn't think it was necessary. So this time I brought Aaron to back me up. We expected to have to convince Dr. Shields and had all our arguments ready, but instead he agreed to this right away. Great!
The other thing we wanted to ask him about was Soren's diagnosis. Being honest with ourselves, we know that Soren has Autistic tendencies, but he does not have this as an official diagnosis. So we asked Dr. Shields if, in addition to his Epilepsy, Soren also had Autism. Without hesitation, he said yes.
This didn't make us feel quite as great. Even though we asked for it, it was a bummer to hear it confirmed and confirmed so quickly. However, the good news is that children with Autism get different/additional therapies.
So now we wait to get the tests approved by insurance and the therapies approved by the Regional Center. And we hope that it we get the results we want from all of them.