Re: Treys journey so far...

January 12, 2011

I would cast as soon as you can. The younger you start the more effective it

will be. Also bracing is know to not hold curves. You son will adapt quickly

to the cast, especially after having been in a brace. I know it is scary at

first but it is completely manageable. If you would like to talk about casting

please feel free to email me directly jennifer.leggett@... or call me

518-686-1452. I am up late so you can call at least until 10:30.

Jenn

Mommy to Cole (3) and Max (6 months)

earthycrunchymama.com

>

> 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,

>

January 12, 2011

My son has been in a TLSO brace since 2. His back has never stablized and has very slowly gotten worse. He's almost 4 now. I wish I would have pushed harder for casting at two. He will get his first cast in Feb. But it might be too late. I live with guilt a d regret EVERY single day that we didn't help him at the right time. Each child is different:) but I urge you to look into more aggressive treatment. I am sure you will decide what is best for your individual family and situation:) best wishes!TSent from my iPhoneOn Jan 11, 2011, at 8:02 PM, Bess <kristen_rene87@...> wrote:

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,

January 12, 2011

Hi ,

I am new to this also, and my daughter has congenital scoliosis so she is not 'eligible' for a cast, but the only thing I do know is that braces cannot cure scoliosis - and casts have a good chance to cure at this young age. And casts may only be for a year or two, whereas the braces are for a long time. I would be choosing a cast rather than a brace if the ball was in my court.

Best of luck,

Emma-Jane

January 12, 2011

,

I have a video of my daughter, Makenna, in her cast posted on youtube. I am

traveling right now, so posting from my phone and can't provide the actual

link...but if you search on youtube for 'Child with Progressive Scoliosis in

Derotational Cast' it will pop up. The thumbnail is her bouncing on a

trampoline.

Hope is puts your concerns at ease I know she's older than Trey, but it

should give you an idea of what these kids are capable of!

Amy

January 13, 2011

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 : )