Infantile Spasms

[grandmaLinda]

My granddaughter has recently been diagnosed with Infantile spasms. She finished her course of treatment of ACTH but still has a "deviation" on her EEG and now is on predisone. She is now 9 and a half months old. She is just starting to sit by herself. No seizures since june 1st. I would love to talk to someone else going though this with their child. feel free to write me at [email protected]

Hiya Linda

My little girl is nealry 6, she had IS when she was 14/15 months

will e mail you tonight

My friend comes on this boars also, her son has IS, I am sure she will contact you also!
I will e mail her and let her know

Great !!! I would love the support. Thanks !

oops sorry, just realised how bad my spelling mistakes are lol

It was early!!!!!!!!!!!

My son was dx with Is at 5 months, he is now 21 months and have been seizure free 6 months......! My son also have a chromocome abnormality but I may be able to answer any questions that you may have?? I think Anniebear and Bethron are far mor knowledgable than me on IS though....! Feel free to ask away

Hes doing ok....hes sitting up by himself now and also getting very strong in his standing frame. His awarness/focus is improving everyday. Hes had a bit of infection the last few days whch has thrown him but Ive stil been getting him to sit up (he must hate me) I know they are all small steps but they are in the right direction!!

How are your ds seizures?

grandmaLinda

sorry I havent got back to you yet, have been a bit busy!

My Alexis seems to zone out at times, also she has always went to bed with ease, no rocking her to sleep. I just put her in her crib and she goes to sleep. That has always worried me. What do you think?

I always used to put mine both down for a sleep without rocking them! (one with IS , one without!)

They always went straight to sleep!

That is great that she has been seizure free sine begin June

and brilliant that she is starting to sit ,

I guess I am used to babies that you have to rock to sleep. Alexis is on Prednisone (weaning off) and Zonagram. At times she seems kinda lethargic. Is that a side effect of the meds? She never has been real cranky like they said she might be. Also never really got bloated from the ACTH. She does sit pretty well but when she gets tired she falls over .

My son was very sleepy when he had the IS and is now on melatonin to help him sllep