DownSyn Forum

karen75 · Posted: September 12 2011, 10:03 PM Post subject: infantile spasms

Our almost 6 month old was just diagnosed with IS. I posted in the "general" forum but thought I should post here too. We decided to go with the ACTH shots and I just wanted to IS and decided to do the ACTH shots. It is overwhelming right now and hearing from families makes it a little more comforting to know you are not alone. Thanks!

nnista · Posted: November 12 2011, 1:51 PM Post subject:

Our boy, just over 6 months seems to have it too. Starting having spasms 3-4 weeks ago (eyes up left & arms out). After a short EEG the doctors said it was some kind of local epilepsy and we started giving him medication. The seizures stopped but are now back and an MRI showed asymmetrical structures on his brain. He will have a long EEG. They now said they suspect Infantile Spasms.

LarkinsMom · Posted: November 12 2011, 6:38 PM Post subject:

Both of you are welcome to call me 217-202-9834 at anytime.

My daughter had IS and I've traveled a very long road with her

Do NOT hesitate with ACTH. You MUST use it and you MUST use it NOW.

Do not hesitate to call me. Everyone on this site will tell you I am "normal" well not necessarily "normal" but I am not an internet nut. I do know Epilepsy like the back of my hand.

Here to help ease your way and fears. There is a light at the end of the tunnel and I promise you it's all OK.

_________________
Amy
Momologist (tm) to Chase 8/29/95, Larkin 10/4/05 (DS, IS, LGS), Brin & Erin twin girls 11/17/09.
http://momologist.com http://larkinsplace.com/

DanielsMommy · Posted: November 12 2011, 6:44 PM Post subject:

Hi, I just wanted to urge both posters to please call Amy. When I saw this post, I went and found her because whenever anyone hears IS...we think of Amy and her sweet Larkin.

I've known Amy 6 years now, and we have both been here on downsyn for just about as long. She's totally legit....so please reach out to her...she is a wealth of information from her experience with Larkin.

_________________

Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

nnista · Posted: November 13 2011, 9:17 AM Post subject:

Thanks a bunch! Do you use Skype? We will bring this up with the doctors tomorrow.

LarkinsMom · Posted: November 13 2011, 10:53 AM Post subject:

I do use skype you can find me under larkinsmom and I will open it now and keep it open. I am off and on the computer so keep trying me

_________________
Amy
Momologist (tm) to Chase 8/29/95, Larkin 10/4/05 (DS, IS, LGS), Brin & Erin twin girls 11/17/09.
http://momologist.com http://larkinsplace.com/

QuinnsMom · Posted: November 13 2011, 10:42 PM Post subject:

I want to emphasize that calling Amy is one of the best things you can do under these circumstances. She provided us with such great guidance when we received the dx with Quinn. Amy, if you read this - thanks thanks thanks.

_________________
Karyn, Quinn's Mom -
Mother of Riley (age eleven), Aidan (age seven) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/