Guest guest Posted April 10, 2012 Report Share Posted April 10, 2012 Me too...How'd it go, Tame? I hope you guys are well. HRH > Praying for positive results today. > > Eryn > Mother of Brayden, 18 months old, 21* out of cast, 0* in cast, currently > in cast #2 > > ----- Reply message ----- > From: " Tame Olson " <dazies2001@...> > <infantile scoliosis treatment > > Subject: not sure what to think > Date: Thu, Apr 5, 2012 10:51 am > Our stories are similar. Can chat long... My son has a 2 pm cast change > and I am currently starring as his entertainment:) sigh. > We will be going into a brace this summer to. He is 5 and has plateaued at > 25. Also don't know what to feel... But glad I read this today. So glad. > I am hoping we get some good correction today so we are in the best > position possible going into brace. > More later. > Hoping to avoid surgery and knowing that may not be a viable option can > make a person sad.. Z > T > > Sent from my iPhone > On Apr 4, 2012, at 11:22 PM, " SR Clancy " <svale88@...> wrote: > > > > > > > > > > > > > > > > > Hi Everyone, > > Eden started casting when she was 29 > months old and 49 deg. She’s now 4 years old, and is in cast #9 as > of two weeks ago. She didn’t get an out of cast xray this time, so > we need to wait until June. Her in cast curve was around 19 deg – > not much different than cast #8. Her out-of-cast curve was 30-32 deg > before cast #8. She definitely appears to have plateaued. She’s > getting a brace for the summer. Last summer’s brace corrected her > to slightly better than 24 deg while in the brace, and the brace held the > curve > over the summer (she stayed around 32deg out of brace or cast). The plan > is to re-evaluate at the end of the summer and decide whether to stay in > the > brace or go back into a cast. I believe her rotation is negligible. > > > > The doctor talked long term for the first time. He > said most kids in Eden’s situation (I’m > paraphrasing) will hold their curve until their pre-pubescence growth > spurt. > If the curve improves now, (assuming we cast again in the fall?) and gets > a > little worse during pre-pubescence, she may not need surgery later. If it > doesn’t get any better now, and gets a little worse during > pre-pubescence, she may need one surgery. If it slowly continues to get > worse, and worsens more during pre-pubescence, she may need more than one > surgery. I’m guessing he is referring to growth rods and subsequent > lengthening surgeries. > > > > I was really hoping she wouldn’t need surgery. I’m > bummed to say the least. I totally KNOW that Mehta specialized EDF > casting > has made a bad situation much, much better by straightening her spine as > much > as possible, correcting her rotation, aligning her body so that she walks > & > runs straight and doesn’t put uneven wear on her other joints, and > giving > her heart and lungs symmetrical and sufficient space to develop properly. > So I am tremendously thankful for this treatment!!! But I had really > hoped she would never need surgery. L > > > > I don’t want to borrow trouble because this is > something we won’t need to face for approximately 8 years. Heaven knows > what could change in that time. I also know there are much worse things > that a child could go through. Honestly, I don’t even know what to > think or feel at this point. Please feel free to respond with your > thoughts on this. Thanks! > > Sherry > > > > PS My only definite thought is that for everyone who is told > to “wait and seeâ€, please go to a casting hospital/doctor and get a > second opinion. If > your child needs casting, please please do it earlier rather than later. > > > > > We did not “wait and see†but were delayed due > to a special situation. Eden has Erb’s > palsy. It’s very mild. I think the pediatrician(s) were > chalking anything out of the ordinary up to the erb’s and assuming her > erb’s > specialist was taking care of it. The erb’s specialist saw her at > 12 months and said she was cleared and didn’t need to come back for > further evaluation, so the kicker is no doctor saw her between 12 and 24 > months! She had a strange, loping gate when she ran and definitely had a > rib hump which I discussed with her physical therapist at every monthly > appointment. > I thought it was uneven back muscle development where her normal side was > strong/muscular > and the muscles on the other side of her spine were weak/paralyzed due to > nerve > injury. Her PT (who is really good at what she does but still she was a > 26 yr old relatively inexperienced kid out of college) didn’t recognize > the rib hump for what it was. Her pediatrician (who definitely isn’t > 26) didn’t recognize the rib hump for what it was either at her 24mo > well > visit. Her PT was concerned she was at risk for scoliosis, but was > shocked, as everyone (us, ped, ortho) when the xray came back. She was > casted > within two months, but by 29 months of age, we had missed the early > treatment > window. > > > > > > > > > > > > TODAY(Beta) • > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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