Infantile Spasms are not diagnosed early in many cases due to a lack of knowledge, even by physicians. I am not putting any blame on physicians, but the fact is that this is so rare, most practicing pediatricians simply won’t even see a case in their career. Parents are almost always blindsided by such a diagnosis. In some cases, a family has warning of a symptomatic onset of this epilepsy. All scientific evidence indicates early diagnosis and aggressive treatment gives the patient the best chance at the not only stopping the seizures, but the best developmental outcome as well.
The only thing I have obsessed over more than my son’s tuberous sclerosis complex diagnosis was the possible onset of infantile spasms. Since we had Connor’s diagnosis shortly after birth, we were in an uncommon position of knowing to be on the lookout for this rare and catastrophic seizure type. We…
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2 thoughts on “Guest Post – Mixed Up Mommy”
So well done! You are increasing awareness ! And i know connors life will be good. You are so lucky to have known so early. We used atch shots then which did work for about a year and stopped the spasms , jumpstarted development again . Then a different kind of seizure came back. Atch had her weighing60 lbs at age 2 however.
Cheers, Susan Givng thanks in November for blessings in my life!
Thank you! Yeah, I know ACTH is a miracle drug for many, but from what I have read, the side effects can be incredibly rough.