Re: i need help--jen

[Guest guest]

Hi Jen

which Shriner's did you go to? that told you he was resloving? Claflin <noellesmommy@...> wrote:

Well, when we went to Shriners the plan was to put him in a cast (not a brace) as we wanted to correct the curve and my understanding was that the brace that our original ortho wanted us to put him in was only to hold the curve and not correct it. Ian's curve was 36 degrees, but when we went to Shriners, it was down to 29 degrees so they decided not to cast as he may be resolving on his own. However, I didn't tell them that Ian was not at all lying flat for his original X-ray taken here in VA and I have since found out that that may have altered the perception of the curve. So, now I am thinking he may not be getting better, but was never that bad to begin with. I am supposed to have him X-rayed again in August to determine whether he is getting better or not (I don't believe he is). Which Shriner's did you go to and what doctor did you see? I am surprised Shriner's saw you without an MRI. They wouldn't even see

Ian until I had sent them the MRI results prior to us seeing them. They use the MRI to rule out tethered spinal cords and other issues that would affect your course of treatment. You should call your ortho and have it ordered for you.

Noelle (12-2-01)Ian (8-15-04)

i need help> > > Hi> My 14 mo old son has scoliosis. Yesterday we> visited> our 2nd orthopedist because we weren't confident> in> the treatment plan from our 1st which was wear>

this> brace for about 4 hours a day and we'll see you in> 6> months. Well, our new dr has the more doom and> gloom> approach. I was told that he will be in a brace> until> he is either a)done growing, ie in 18 years, or > until it is corrected by surgery. She continued> to> tell me that the majority of cases of infantile> scoliosis result in surgery and it is only the> rare> exception that it resolves on its own.> Well, everything that I have read about it says> the> opposite, that surgery is the excpetion and it can> be> resolved by age 2 or 3 with orthotics and as kids> start walking and get trunk strength. So who do I> believe??? I get such mixed messages from the

2> doctors and from other sources that my head is> just> spinning right now. She wants my son in a brace> 24> hours a day for the next 18 years!!> A little background- he has paralysed vocal cords> which causes respiratory problems- a tight brace> won't> be good for his breathing problems. He also has a> gtube and severe reflux- again not helped by> wearing a> restrictive brace. Also he is hypotonic, has low> muscle tone and isn't crawling, pullling up or> walking> yet. I am SOOO terrified that a brace worn all> the> time will take away the trunk muscle that he has> worked SOOO hard to get!!> So I guess I am just looking for some advice and> hopefully

reassurance that the situation isn't as> devastating as I feel it is. Of course I know> that if> not treated it can cause severe deformity. But I> am> wondering if surgery really is the exception and> if> people see results from braces. Also, are your> children able to roll over and just MOVE wearing> these> things? Also, who is the best of the best doctor> out> there? I will travel to the ends of the earth to> get> the best treatment for my son. And I am seriously> lacking confidence in either of our current drs.> Sorry this is so long- I am just in the desperate> and> lost phase right now.> Thanks for listening> allison > >

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