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Hello all!

Posted by on Nov. 16, 2009 at 10:33 AM
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I just joined this group because I'd like to know more about Infantile Spasms as my best friend's 3 month old daughter was diagnosed with it when she was about 6 weeks old.  The recently had a benefit in honor of Brianna to get her a service dog and help pay for medical bills.

I'd like to know what kinds of things do parents deal with and maybe it'll help me figure out a way to help her...despite the fact that I am in Texas and she's in Iowa now!

by on Nov. 16, 2009 at 10:33 AM
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Elyssa414
by Member on Nov. 19, 2009 at 10:16 PM

My story is very long, but we have been struggling with this for  a long time! You are welcome to read my son's story, (by clicking on my signature, which is a link to his website)... And I would be happy to answer any specific questions you have!

Just know that when we were diagnosed, our entire world turned upsidedown! I really became a hermit and stopped talking to almost everyone I cared about. We almost lost my son due to his treatments, and the statistics and options for treatment are SO devastating. It really is a grieving process that you have to go through when you are told there is a 20% chance your child will not live to be 5yrs old, and a 95% chance they will grow up to be profoundly mentally retarded.

You can offer an ear and a shoulder, and gift cards to grocery stores and such, because the treatments and hospital stays and appointments and therapies are SO SO expensive!!

Send her a card to let her know that you are thinking about her, and NEVER EVER tell her that you know how she feels! lol

Good luck, and I think it's awesome that you want this information, and are trying hard to be such a good friend to her!

*hugs*

(PS- you are welcome to share my website with her, but there are other, better stories, where the kids actually responded to treatment and are doing well!! My story might not be the best for her to read at this stage in her journey. :-/  )


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