Hi Briggette

[Guest guest]

Hi Briggette,

I know what it is like to have those curves go up and down, it is a

rollercoaster ride, and not a fun one. Santi is going from 50 degrees to 23

degrees to 33 degrees to 42 degrees, it is never stopping. When you mentioned

the flexible spine, I have been researching those with the connective tisssue

problems such as Santi and I believe Siabhan also. It seems to be common with

those with the extra flexable tendons and tissues. The good news is that once

they get a good cast on, the rate of recuperation is incredible, they can reduce

the curve so much. The problem is once it is off, the spine just goes back

where it was before. I think we have to watch these kids extra carefully,

because it can increase so quickly that it goes unnoticed. Santi went up 15

degrees in just 4 months when he was only 2 years old. Don´t worry, once you

get that nightbrace on, you will see that it should help hold it in place. Are

they doing a charleston? My only concern with this brace,

which Santi is wearing right now, is that when there backs are so weak and

flexable, it can often create another curve. Santi right now only has a left

lumber curve, but the doc mentioned that we have to be very careful because the

brace is fairly " aggressive " in that it is pushing the back the opposite

direction all night long. I am very happy with this brace until we have to cast

again, it is doing a good job holding the curve where it is. Good luck and keep

us informed on how it is going.

Lots of hugs,

Kelli and Santiago

jabostock <jabostock@...> wrote:

Hi Briggette

Sorry to hear that the news on is worrying - I knew too when

Siobhan's back had gotten worse - Mother's instinct!

We'll hope that the night-time brace works - If not, would it be

worth looking into the SpineCor?

Take care.

Jacki

>

> Hi everyone,

>

>

> We got bad news was seen by 4 doctors today. She had her x-

> ray done.Just as I thought she has progressed. She now is at 20

> degrees. March 2006 she was 13 degrees. It's not much but thats 7

> degrees more in just 7 months. They are going to try putting her

in

> a night brace. She was fitted for it today and they said it would

> take a few weeks to get it and then Dr. wanted to see her

a

> month after she has been wearing it. Dr. is concern that

she

> may progress more as she has her growth splurts. He wants us to

she

> there genitices because she is still so flexable.She seen one in

our

> area when she was 18 months old. They said she should be seen

again

> when she was 4-5 years old. So were going to try theres but there

is

> a waiting list to see them so they will call when they can get her

> in. the curve is higher up around the 4T 5T area. Before when she

> was at 66 degrees it was around the 6T area. I had that gut

feeling

> that she was progressing and kept asking my husband,motherinlaw if

> they thought she was. They both said she they did'nt think so.When

> so was getting her x-rays I was thinking she might be at 20

degrees.

> I told the Docs that and they laughed that I was right. well I

will

> keep you all updated.

>

>

> Bridgette,s mom

>

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