Life is real.
But, hope is good. Hope keeps us going. Hope is why I made the call to report Nathan's regression. Or really just the thought that it may be a regression. After the call we headed up to St. Louis Children's Hospital.
My thought was just to update a few people of the events. But, my list kept growing. Those who have deeply rooted concern, effort and feelings for Nathan. They want to know. They hope for the best always.
To make a long journey short. I called the head neurologist of Nathan's team at St. Louis Children's hospital to report his laughing spells and 'all nighters'. When she returned my call she told me to load up the car, they are expecting Nathan in the E.R. We jumped in the car and started the journey.
He was a brave young man. Was patient as his EEG was being hooked up. Best they had ever seen getting an I.V. Over 2 & 1/2 days in our room...
So what happened while we were there is the team reported that Nathan had a positive test for "Antibodies to Brain Endothelin". This test is positive in individuals with regressive autism and those with Landau Kleffner. Nathan has not been diagnosed with Landau Kleffner. He is not showing the seizure pattern to be diagnosed. The hopeful part is. With this correlation of LK and regressive autism. Recent research is showing that one of the treatments for LK is having a positive impact on individuals with regressive autism.
Nathan had his first IVIG treatment while we were there. They watched him very closely and we are watching for improvements. If this treatment has a positive impact on him we should know in the next 3-4 months. It takes some time. But, we have already had some positive feedback from those who didn't know he had the treatment. Hoping for some language, but will be elated if we can just stop the regression.
He was a brave young man. Was patient as his EEG was being hooked up. Best they had ever seen getting an I.V. Over 2 & 1/2 days in our room...
So what happened while we were there is the team reported that Nathan had a positive test for "Antibodies to Brain Endothelin". This test is positive in individuals with regressive autism and those with Landau Kleffner. Nathan has not been diagnosed with Landau Kleffner. He is not showing the seizure pattern to be diagnosed. The hopeful part is. With this correlation of LK and regressive autism. Recent research is showing that one of the treatments for LK is having a positive impact on individuals with regressive autism.
Nathan had his first IVIG treatment while we were there. They watched him very closely and we are watching for improvements. If this treatment has a positive impact on him we should know in the next 3-4 months. It takes some time. But, we have already had some positive feedback from those who didn't know he had the treatment. Hoping for some language, but will be elated if we can just stop the regression.
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