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Infantile spasms

Fri, 01/12/2018 - 02:03
My son was diagnosed with infantile spasms at 4 months old, he was prescribed a steroid but it didn't seem to help so they switched him to vigabatrin; he is now 6 months, he still cannot roll over, he's not reaching out for toys, and it seems that his right side is stronger than his left, when in a standing position he will only put weight on his right leg, and his grip is stronger on his right hand. Anyone else experiencing this with their little one?


Are you working with an

Submitted by Amy Jo on Fri, 2018-01-12 - 12:08
Are you working with an epileptologist? Has your child been diagnosed with a syndrome/condition that already explains this?  Have you asked the epileptologist if these developmental issues could be genetic (and warrants a referral for genetic testing) or if this could be a structural issue and some imaging should be ordered. Our child with epilepsy didn't have infantile spasms but does have a congenital neurological condition. Our neurosurgery team has congenital patients and any other patients with questions see a developmental pediatrician (the name is deceiving, the doc was the director of the program that deals with a huge variety of developmental issues for a children's hospital serving four states). That might be a good type of doc to see if there's no suggestions with the neurology dept. This also assumes your hospital/specialists are able to deal with the level of issues your child has. Find out where your hospital specialty depts stand in ratings by US News and World Report (it's not the definitive list, there isn't one, but it's a good stand in).

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