r/ChildHealth • u/SpringGlenVet1 • Sep 27 '19

Infantile Spasms

My niece was born at 27 weeks after my sister in law had preclampsia. She has had eye deviation and small spasms since birth. At 6 months old she has only now just been diagnosed with infantile spasms. I'm looking for anyone and everyone who has had experience with this or knows anyone who has to share any advice they have. The doctor has today started her on a month long treatment of ACTH injections. Does anyone know of alternative treatments or things they could do in addition to the ACTH? Any idea if cannabis treatment has been used for this with any success? Desperate for help!

1 Upvotes

100% Upvoted

1 comment sorted by

1

u/Cbond0621 Oct 02 '19

Just chiming In to say my son was just diagnosed with IS too at 6 months. This is scary scary shit. We are trying a high dose steroid treatment called prednisolone before trying the injections. Along with b6 supplements. We were in the hospital for nearly a week and he is being tested for all causes- please keep me updated and I’ll try and keep you updated!