Information Overload

Today was a big day for us. We saw our neurologist today because the kiddo had an abnormal 24 EEG last week and they wanted to discuss medication options with us. When we met with the doctors we learned that he is now has what is being called Mixed Seizures, meaning that he is having two different kinds of seizures. We knew about the Absence seizures because we have seen him have them. The second kind I had never heard of before. It's called Salaam seizure/spasm, and it looks like he sharply jerks his head down to his chest when he is having one.The doctor compared them to infantile spasms, but not as severe. After they told us what it was, he had two episodes we noticed today. They gave us two treatment options, one to give him an experimental drug that can cause blindness (he already has Cortical Visual Impairment) or giving him a different drug (don't know which yet) and starting him on a ketogenic diet. We decided to go with option # 2 for now and see how he does. He depends so much on his peripheral vision because of the Cortical Visual Impairment and the idea that he may lose it because of an experimental medication is unthinkable to us.


While we were there I brought up with his neurologist that his pediatrician mentioned the possibility that Matt might have Cerebral Palsy at our last well child check. With all his health issues, we have never been given a formal diagnosis that might explain everything that he has going on--seizures, microcephaly, genetic abnormalities on chromosomes 3 and 5, developmental delay, hypotonia, CVI and bilateral hearing loss. From everything I have read about CP, it sounded like some of Matt's issues could be classified as Cerebral Palsy. His neurologist agreed with me and added the formal diagnosis to Matt's medical records. As weird as it may sound, hearing the diagnosis was a relief to me. For the past two years, we have seen numerous specialists and therapists and it felt like all they did was heap all those other diagnoses on my little man without actually giving a name to all that he was experiencing. The CP diagnosis changes nothing about Matt. He is who he is and and his health issues do not define him.

So much information to process today, but I'm feeling confident that we made the right decisions at this time.