I also have a five year old who has global delay as well as seizures and about an arms length list of other symptoms. We were told just recently that an mri showed shrinkage of the cerebellum. She, too, has undergone numerous tests, all of which have been fruitless. she has great doctors at the University of Virginia, im just curious to know what information your doctors gave you about this issue. We were basically told that this happens and they dont necessarily know why, but that it is a symptom of certain classifications of epilepsy. im still a little lost as to exactly what it means though.
Yes it would definitely help as in these cases experience and 2nd opinion works and even if it is a little chance it is worth a try. You can always keep your primary doctor informed if you want. Take care!
I am from Louisiana and I want to know if finding a doctor at St. Jude might be the best place to bring my son for a second opinion?
The degenerative changes might be due to some developmental anomaly/ tumour/infection which the neurologist has to determine based on the tests and symptoms developed. The diagnosis is difficult and you have to continously monitor the case and fix appointments near the neurologist. Sometimes additional symptoms would make it possible with time to diagnose the case. I can understand it is painful for the family but the only way is following up at a good faciltiy with paediatric neurology facililties. Take care!