Thanks. We had a very difficult time getting our son's seizures correctly diagnosed. Because his EEGs and VEEGs were unclear neurologist said it was just his autistic behavior. They would send us to see autism specialist, psychologist, or psychiatrists. All of those professionals would say this is not autism you need to get him to a neurologist! This went on for years. Matt was having temporal lobe, complex partial seizures that sometimes would generalize to drop seizures.
It's a very long story but God blessed us so many ways during this terrible ordeal. I know that sounds strange to say. But during our darkest trials God is with us. My husband was laid off and we moved from one state to another. We went through the same round of bouncing from neurologist to other professionals. We finally went to a clinic that knew exactly what was going on with Matt. It was 4 hours from our home but they designed a treatment program that helped him. We never got control of his seizures but the nightmare started to turn around. It still took a battle to find local neurologist in a major city to agree with the treatment plan. Then on our 30th anniversary Matt was having a VEEG. We dreaded when the neurologist suggested it but it was a huge blessing. It documented everything we had been saying for 7 years. It picked up every single seizure and even ones that we didn't note! The staff said it was just like the parents told us. That was a complete change from what half dozen other neurologist had been saying to us all those years.
So all that we lived through and I've encountered so many other families on the autism spectrum who fallen through the cracks. 30 to 50% of people who have autism also have seizures. Many are not being diagnosed and all of you know how serious and even life-threatening undiagnosed seizures can be!
Here is an article that just backs up what our experience was. The title of this article is misleading, it really should be challenge remains to diagnose seizures in people who have autism as that is what it is about.
Nedra 2 of 5,
Borg Mom Resistance is Futile in finding what works for my kids with God's help
All the accomplishments of my family are a gift from God
Challenges remain to diagnosing, treating autism
Read more: Challenges remain to diagnosing, treating autism
---In epilepsy@yahoogroups.com, <aina-pat@...> wrote :
Great info Nedra! AND there are many specific neurology fields so one should always seek a neurologist who specializes in Epilepsy / Epileptologist. The website for the Epilepsy Foundation of America is a good resource at www.epilepsy.com too. We too made this mistake early on with a neurologist who wasn't really into Epilepsy.
Pat D
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Posted by: nedra3boysi@sbcglobal.net
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