Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 Great post Ami. Spot on! I'll check out your group when I can. I have seen quite a few heart/scoli kids and the more info on the correlations between this dual diagnosis, the better. HRH > Hi there- > > I can tell you our story, which might help you with yours! Abigail showed > signs of scoliosis for over a year before it was diagnosed, so she had a > late diagnosis at 3 years of age, with a double S curve 45 upper/ 35 > lower. She missed her window and we are fighting to pack pedal in order to > avoid the surgeries all the doctors tell us are inevitable. Your son is > only 16 months, so he has a better chance of getting correction than if it > was caught later..but my advice would be do not mess around with a brace, > go for the cast. You have a very short window of time to nip this in the > bud and b/c Trey has had OHS he will be more resistant to correction. > Kids with heart defects (my son ial, 2, has Transposition, ASD and > VSD, OHS @3 days old Boston Children's) are more resistant to correction > b/c of the surgery they have been through. There is another mom on here > who may post about her experience. > > You are still in that window of opportunity and the studies show that > braces HOLD curves...they seldom correct them. If you want correction for > your son, get him in a cast ASAP. The worse his curve gets the more it > could compromise his lung and heart function and being a heart mom I'm > sure you know any surgery is riskier for our babies b/c of the > suseptibility to infection, so growing rods are something we really want > to avoid! IF the cast is done right, mobility will only be an issue for > the first couple of days until he gets used to it the only thing Abby > can't do is bend at the waist, she does the trampoline, dances, runs > etc...the most important thing is to make sure you get the right casting > doctor and people on this board can help you out tons.. > > -Ami > > P.S: There is a group I started on Facebook called The Connection: CHD > and Scoliosis..it's still in baby steps but there are many mom's facing > both issues so you are not alone : ) > > > > >> >> Hello all, im new to the group because i need some advice and >> encouragement on what i should do! My son, Trey, is 16 months old. When >> he was a week old he had open heart surgery. All is good with that. But >> when he was 10 months old i found out he had infantile scoliosis which >> they say is caused by his heart defect in his case. Well i took him to >> the back dr in July 2010 his dr said that he had a curve of 32 degrees >> but he didnt want to put him in a brace yet bacause he wasnt walking we >> took him back to the dr in october 2010 and he was walking so they put >> him in a TLSO brace his spine was 42 degrees. He absolutly hated the >> brace at first still isnt to fond of it but he can move alot better and >> is gettn used to it. i just took him back to the dr last week and his >> spine is now 49 degrees. Im torn on what to do because he did just get >> the brace and started wearing it like hes supposed to not to long ago so >> im not sure if i should just give it more time to >> work or what! i have seen alot of your kids are in casts, which is >> another thing his dr said would happen if the brace didnt work but the >> cast thought scares me because i think of it limiting his mobility so >> much! and im also really scared of what happens if his spine gets any >> worse! >> >> thanks for listening, >> >> > > > Quote Link to comment Share on other sites More sharing options...
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