Infantile Spasms

Nurses General Nursing

Published

Specializes in Cardiac, Maternal-child, LDRP, NICU.

Hi I was wondering if any one has taken care of a baby with infantile spasms dx. I have started to see this dx more and more now in peds. Currently i take care of two babies with this dx and nothing seems to help them. Its heart breaking to see these babies. They also get seizures which is barely controlled by any anti-seizure medications. Have been trying new experimental drug called sabril not yet FDA approved but some neurologist are prescribing it to control the spasms and it seems to have helped little bit. My biggest concern is brain damage which these kids already have. Any new info research around US would be appreciated. Thanks!

I'm not a nurse yet (starting this fall) but had to reply. My son has infantile spasms. He was diagnosed when he was 6 months old, he is 4 now and still has daily seizures. He took Sabril (Vigabatrin) and it worked for 2 weeks and then stopped for whatever reason. We had the most success with the ketogetic diet. He was actually seizure free for awhile. Unfortunately we had to stop because his stomach was not tolerating the high fats/oils too well. I believe the child has to be over the age of 1 before they can try this diet. As far as brain damage, my son is developmentally delayed but progressing (He's learning sign language, likes to color). One of the most important things is early intervention, I know that helped my son out a lot.

My son had infantile spasms when he was about 6 mo. old. He was given daily injections of a steroid called ACTH. Within about a week the seizures stopped, and he is now 12 yrs old. He hasn't experienced any developmental delays, and has been seizure free since. This was the first thing he was treated with, and it worked right away! I know that was a long time ago, I wonder if it's still used?

Specializes in Cardiac, Maternal-child, LDRP, NICU.

Thanks for the reply, we have tried ketogenic diet on one of our kids who is now three years old but has not helped yet actually she has started to have more spasms. ACTH is still being used but not that frequently any more sabril is the drug of choice now but several side effects like kidney failure and blindness maybe that;s why its not FDA approved. One of the infants just started having infantile spasms at 6 months old and the other infant who is now one years old was left in birth canal too long the HR dropped and had permanent brain damage. Its very hard for me to work with these kids but i know the families need a lot of help so we nurses try our best! Thats all we can do for now and yes i believe in lots of therapy too!

As a parent, the nurses are what got me through our initial diagnosis in the hospital and various VEEGs etc. I just want to say a big thank you to you and the other nurses! We had dr.s coming in and out through out the day and everything they said was a blur. I remember the nurses coming in and asking how my husband and I were doing. She let me cry and took time out of her busy schedule to sit with me a few mins. I'm sure she didn't know what to say, it's hard to know the right thing to say. The fact that she cared was what helped me get through that week. That is actually a big part of why I'm going into nursing. I wish I had the answer, but what works for one child doesn't always work for another. That's the hard part with infantile spasms. Anyway, thank you for what you are doing, it is greatly appreciated!

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