ANY hopeful information regarding infantile spasms?
I'm a first time mom, and my 7 month old son has been diagnosed with infantile spasms. Everything I've read on the internet has done nothing but scare the hell out of me. It says there is an 80% chance that he will have mental retardation. This is so heart breaking for me as I'm sure it is for any parent. I cry and cry and cry despite all the support from my family. My son will probably be starting a treatment called ATCS. I was just wondering if anyone has been through anything similar. Did this treatment help? I've already looked up all of the side effects and everything but I'm just curious about whether or not it has actually helped. My sons spasms have NO cause. No head trauma, meningitis, trauma at birth, etc. I'm so afraid for him. He already seems to be alot less happy then he used to be and it's breaking my heart. Any advice would be greatly appreciated.
- 1 decade agoFavorite Answer
My daughter, who is about to be 3 in April was diagnosed when she was six months old. She is thriving! She is just like any other two year old...Don't give up hope. We were given the same statistics you have been given. We went through the ACTH injections (make sure they give you the topical lidocaine to dull the injection site-makes it much better) and looked anxiously forward to each EEG. Amazingly, we experienced none of the problems I've read associated with the ACTH injections. Within two weeks her seizures subsided.We also gave her prednisone and and a crushed B6 vitamin in applesause, pudding, etc. She gained a lot of weight and had some minor developmental delays ...but she caught up with physical therapy. Her neurologist released her in less than a year saying she was doing "wonderful." So...hug that baby, talk to him, hold him, there is hope. I know how you are feeling!!!! I will be praying for you and your son.
- 1 decade ago
Hi my name is Frances just read your email regarding your son who has been diagnosed with infantile spasms. My husband and i really feel for you as our daughter has been diagnosed with the same conditon, she is 6 month's of age and we were told this about 2 weeks ago. We just really feel your pain as we are trying to understand what the future holds for our daughter. I no this is not the answer to your question tho feel free to contact us as we can share each other's information?