Special needs adoption from a Jewish perspective.

Special needs adoption from a Jewish perspective.

Wednesday, October 10, 2012

31 for 21: Infantile spasms

I just read something about Down syndrome that I didn't know! 

Noah's Dad wrote about Infantile Spasms, which apparently occur in 8-10% of all children with Down syndrome.  They are easy to miss, and also easy to confuse with other, benign behaviors of Down syndrome children.  However, these spasms can lead to severe developmental regression.  Apparently there is a very expensive steroid treatment which can reverse the damage.  Please read the info at the link.  It is fascinating!

This seems to offer an explanation of why most kids with Down syndrome seem to do really well with aggressive therapy, while some seem to be stereotypically "profoundly delayed" -- non-verbal, non-mobile, totally dependent.  It also might explain why some of the children in the orphanages are placed in the "laying down" rooms at an early age, and end up doing very poorly.  Some of them are even listed with "epilepsy" -- could that be a misdiagnosis of infantile spasms?  Certainly, a child who is already delayed due to Down syndrome, compounded by orphanage delays, cannot afford the additional handicap of seizure-induced regression.  If they are not seen to be mobile, they are left in their cribs.  If they cannot self-feed, their bottles are propped for them.  They are not given any opportunities to interact with the environment, and they sink lower and lower.  They can be redeemed by a dedicated family, but the effort required for every step of progress is quite intensive!

Most of the orphans with Down syndrome, however, do develop rudimentary skills, which they can build on rapidly when placed in a loving family setting with the usual therapy regimen.

It really puts a different spin on the whole Water and Fire thing.

No comments:

Post a Comment

Jewish Bloggers
Powered By Ringsurf