Apparently Dr. Confidence had a reason for his confidence. Within the specialty of neurological disorders, he specializes in seizures, so he was able to put Dexter's symptoms together in a way that others had not. Dexter has a seizure disorder called Ohtahara Syndrome. The doctor said he can be 100% confident about that because it's a clinical diagnosis rather than an etyological one. That means that it's based on observable behavior and the EEG and MRI, and Dexter fits perfectly, but it doesn't address what caused the disorder. He explained that Dexter's MRI (and prenatal ultrasound, actually) showed Ventricular Muh-muh-something-that-means-softening, which was caused either by a hypoxic event like a bleed in the brain or a metabolic disorder yet to be determined with the pending blood tests. He also asked me if I noticed increased fetal movement compared to my other pregnancies, and I actually did. Dex may have been having myoclonic spasms or seizures in utero.
Regardless of what caused it, the good doctor somberly informed us that the prognosis for Ohtahara Syndrome is not good. Although the syndrome is very rare, this doctor has had four patients with it (one of the advantages of Dexter being at a Children's Hospital where people from all over flock to the experts). While their outcomes have varied based on the severity, the doctor feels like Dexter's case is quite severe as his seizures are not controlled by high doses of two seizure medications. He added a third. It was another somber discussion with a Doctor. Tomorrow we have a Care Conference to complete the serious discussions with all of the doctors together. I am so grateful that the Lord prepared me for this last week; it really helps me to handle such unwelcome news. Once again, my mind turns to the principle from Mosiah 23 and 24 that I pondered on Dexter's second day of life--that sometimes rather than immediately deliver us from our burdens, he strengthens us so that we can bear them with ease. And that's really not such a bad deal since the purpose of this life is to learn and become.
2 comments:
Hugs to you that your Care Meeting goes as well as can be expected tomorrow, and that you're able to all come to a consensus.
"He never said it would be easy, He said it would be worth it".
Love, Roxane & Randy
PS...Crystal said to tell you that they are praying for your family also.
I was thinking about what it would be like to go to a care conference and discuss sweet little Dexter's life, abilities and struggles with a room full of doctors. It sounds very sobering. Then I remember how very carefully the Lord holds you and Dexter in His hands. That knowledge brings peace, doesn't it?
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