Re: New Member with a newly diagnosed 8 month old IS

Posted June 27, 2012 · June 27, 2012

Jenn,

First I'm so sorry your family is going through this! I remember very

well the day we were given a progressive diagnoses....the room was

spinning. The MRI was also a very difficult experience for us. I

remember thinking if just the MRI was this bad I can't imagine what

casting will be like & traveling to anther state at that! Honestly for us

I think the MRI was harder. Not that the 1st cast was a walk in the park

but we already knew what to expect as far as the GA & that was the

scariest part for me...besides the fear of casting not working. It gets

better...it really does. We found my sons scoli in a similar way & had

the same reaction from our peds doc. In fact almost any medical

professional I tell about my sons condition is usually shocked & has never

heard of it before. That is one of the reasons we chose Shriners for

care. I wanted a place where my son wasn't an rare case. A place that

saw this " all the time " . Best of luck at your appointments!

> Hi Ladies!

>

> I am a new member & my name is Jenn. My 8 month old daughter Jude was just

> diagnosed 6-18-12 with Infantile Scoliosis. We had noticed that her left

> side of her ribs bulged out further then her right side & we felt that

> something wasn't right, so we took her to her pediatrician & had her

> examined. He looked at hetr back & said he thought it was probably more

> muscle on that side but sent us down for an X-Ray to rule out anything

> else. I was NOT prepared for what I saw on that X-ray. There it was plain

> as day a C shaped curve to the left side exactly where I had noticed the

> Hump 'extra muscle'. The Dr then explained how it was so rare that he had

> never seen it in is 25+ years asa practicing Pediatrician & so he referred

> her to Children's Hospital. You will have to forgive me as I'm sure he

> said more than that but I was so numb by what I just saw that I didn't

> catch anything after Infantile Scoliosis. SO I immediately went home and

> googled IS and read everything I could possibly find about thus rare

> condition that I didn't even know could happen in babies. All I ever

> remember hearing about Scoliosis was when i was 14 & got checked in the

> school nurses office. So I came across ISOP & here we are.... I have an

> appointment with Children's & Shriners next month. I need ALL the advice I

> can get! Bring it on ladies!!!

>

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