Yippee!

[Guest guest]

Diane,

I truly get how exciting this is for you, we went through it with my daughter, not for as long as you, 9 to 14, but still I get it. Hopefully she's not released from care yet, lets hope she maintains after the brace is off. Ceili held steady and didn't progress beyond 28 degrees, and had to one, stop growing, and two, hold the curve for a year post brace, and both happened. She's been released from care for 5 years, till she's a sophmore in college. With Ceili they could get her curve down to 3 degrees in the brace, amazing, but of course that didn't hold, she steadied out at 28, from what was a 30 degree curve. She has a long" C" type curve. She has quite a bit of rotation to her curve, so she has a big twist to her core, I see it, any of you gals would see it, but no one else notices. Long C curves can be painful, so she really has to watch what she carries, weight in a back pack can bother her, and some exercises too, we accomodate, teachers give her a longer passing period so she can chuck crap in her locker instead of carrying it.

It's always harder when it's your kid, than what we went through, and I'm so sorry so many of your girls are affected. I have three kids, only Ceili got it. We are watching my Granddaughter from my unaffected daughter like a hawk, as both Ceili and I had juvenile onset, and the scoli runs hard and fast and progressive with us. Ceili thinks she wants to adopt rather than have kids and maybe pass it along, I get that. I know when I found her's at age 9, and get this, between revisions of my own, I cried for three days before I could get up the strength to take her to Kumar, all I heard ringing in my ears was what my surgeon from my Harrington Rod surgery said, that I shouldn't have children, that I'd pass along the deformity. I felt like crap. But at least she had a Mom who knows the beast, and a doc who was just amazing with her, and an excellent brace guy who got her through, tough wearing that thing 18 hours a day for a year.

So know I'm dancing here in Colorado for your family, such a good day!

Colorado Springs

Re: [ ] Yippee!

Hi Debbie,

Yes, it is exciting. I'm actually not sure if we knew the degree at age 3-4, although my husband and I recognized a curve at around 3 years old. At 4 she was monitored yearly by our pediatrician until she was 6. I believe that is when the x-rays showed 28, 29 or so degrees. I had just had a preemie baby when she got put into her first brace. I wasn't good with record keeping then, and when our original scoli dr. quit due to a lawsuit, we moved on, and I lost track. She has since switched drs again due to the dr. on a leave of absence or something. The current dr. had studied under him. He is also the one who gave me info on my back situation.

Anyway, I still think it is pretty amazing to actually have correction rather than just holding the curve. She only held during the daytime Boston brace years, but corrected during the Providence nighttime brace years.

My other daughter has a tougher double curve (the older has a compensatory curve, not a double). Strangely, we watched all 3 of our girls, and our middle daughter showed no signs of scoliosis whatsoever until she was nearly 10. (Our youngest has a slight curve that we'd been getting x-rayed since she was around 5 or 6.) So when I was giving her a backrub one night I started to notice a hump by her shoulder. Sure enough, she had it. It took a bit to get her in due to our normal pediatrician moving to a new job, and our new pediatrician on maternity leave. And of course, I had to see the primary care physician before I could get her in to see the specialist. I pressured the pediatrician office and got her in with another doc. The scoli dr. got her into a brace right away. She's doing okay, but I'd really hoped to see results more like her sister's. Also strange is that the one whose back responded so well to bracing has really not been in her nighttime brace more than 7-8 hours a night instead of the required 10, while the younger one with not so great results has been very good about getting 10 + hours in a night. That's why each child is treated as an individual, I guess!

Well, this is getting long. Thanks, everyone for rejoicing with me!

Diane VDW

Michigan

Hi Diane,Congratulations on your one daughter's success. That must be such a relief and such a great thing to see results! I didn't even know they could do anything or even diagnose so early. (You wrote that her original curve of near 30 degrees was determined when she was 3 or 4). That is so amazing that they can catch it so early and watch and try to correct. Your daughters are very lucky to have you and to be such an advocate for them. Debbie____________________________________________________________ Make the right POS decision. Click here for POS systems that meet your business needs.

[Guest guest]

CONGRATULATIONS l1t6!!!!!!!!!!!!!!

Yippee!

My medical insurance authorized an additional 12 weeks of physical

therapy (beyond their standard 60 days for any one condition).

!

Of course, this means more pain in gainful ways. :-p My PT is tops,

but sometimes I wonder if she's a bit of a sadist. Are they all? lol

sonia

[Guest guest]

Hey thats great ....more pain,more gain! :-)

Yippee!

My medical insurance authorized an additional 12 weeks of physical

therapy (beyond their standard 60 days for any one condition).

!

Of course, this means more pain in gainful ways. :-p My PT is tops,

but sometimes I wonder if she's a bit of a sadist. Are they all? lol

sonia

[Guest guest]

Great news Sue! I hope next test brings even better news.

a

On Aug 5, 2005, at 9:02 PM, Sue wrote:

> Hi Gang,

>

> I had blood work done this week and got the results today. Good news!

> My white blood cell count, which has been below normal for over three

> years, is back in the normal range, though just barely. Normal for the

> lab is 4.0-10.5. Three months ago mine was 3.4. This time it was 4.4.

> I

> don't know why it finally decided to come up, but I'm so glad it did.

> I

> was beginning to wonder if I had Felty's syndrome, but I guess I

> don't.

> I just hope it continues its upward trend.

>

> Im glad I have something good to report!

>

> Sue

>

>

>

>

[Guest guest]

Good news, Sue!!!!

> Hi Gang,

>

> I had blood work done this week and got the results today. Good

news!

> My white blood cell count, which has been below normal for over

three

> years, is back in the normal range, though just barely. Normal for

the

> lab is 4.0-10.5. Three months ago mine was 3.4. This time it was

4.4. I

> don't know why it finally decided to come up, but I'm so glad it

did. I

> was beginning to wonder if I had Felty's syndrome, but I guess I

don't.

> I just hope it continues its upward trend.

>

> Im glad I have something good to report!

>

> Sue

[Guest guest]

Great News Sue. It is always nice to see this type of post as it gives everyone

a good feeling.

Hugs

June

----------

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Checked by AVG Anti-Virus.

Version: 7.0.338 / Virus Database: 267.10.1/64 - Release Date: 8/4/2005

[Guest guest]

DianeV,

That is excellent news. Phew! Congratulations.

Take Care, Cam

[Guest guest]

Hi Debbie,

Yes, it is exciting. I'm actually not sure if we knew the degree at age 3-4, although my husband and I recognized a curve at around 3 years old. At 4 she was monitored yearly by our pediatrician until she was 6. I believe that is when the x-rays showed 28, 29 or so degrees. I had just had a preemie baby when she got put into her first brace. I wasn't good with record keeping then, and when our original scoli dr. quit due to a lawsuit, we moved on, and I lost track. She has since switched drs again due to the dr. on a leave of absence or something. The current dr. had studied under him. He is also the one who gave me info on my back situation.

Anyway, I still think it is pretty amazing to actually have correction rather than just holding the curve. She only held during the daytime Boston brace years, but corrected during the Providence nighttime brace years.

My other daughter has a tougher double curve (the older has a compensatory curve, not a double). Strangely, we watched all 3 of our girls, and our middle daughter showed no signs of scoliosis whatsoever until she was nearly 10. (Our youngest has a slight curve that we'd been getting x-rayed since she was around 5 or 6.) So when I was giving her a backrub one night I started to notice a hump by her shoulder. Sure enough, she had it. It took a bit to get her in due to our normal pediatrician moving to a new job, and our new pediatrician on maternity leave. And of course, I had to see the primary care physician before I could get her in to see the specialist. I pressured the pediatrician office and got her in with another doc. The scoli dr. got her into a brace right away. She's doing okay, but I'd really hoped to see results more like her sister's. Also strange is that the one whose back responded so well to bracing has really not been in her nighttime brace more than 7-8 hours a night instead of the required 10, while the younger one with not so great results has been very good about getting 10 + hours in a night. That's why each child is treated as an individual, I guess!

Well, this is getting long. Thanks, everyone for rejoicing with me!

Diane VDW

Michigan

Hi Diane,Congratulations on your one daughter's success. That must be such a relief and such a great thing to see results! I didn't even know they could do anything or even diagnose so early. (You wrote that her original curve of near 30 degrees was determined when she was 3 or 4). That is so amazing that they can catch it so early and watch and try to correct. Your daughters are very lucky to have you and to be such an advocate for them. Debbie

____________________________________________________________

Make the right POS decision. Click here for POS systems that meet your business needs.

[Guest guest]

It can be diagnosed early, if one is looking for it. I was born with

scoliosis, and it was diagnosed immediately, but unfortunately mine was

not the kind that can be corrected with bracing (though they did try.)

As I understand it, most scoliosis is adolescent idiopathic scoliosis,

which doesn't start until teen or pre-teen years. But some kids get it

at much younger ages.

Diane, I'm so glad your daughter has had such great results, and hope

the other one can avoid the need for surgery.

Sharon

Deborah Peltz wrote:

Hi Diane,

Congratulations on your one daughter's success. That must be such a

relief and such a great thing to see results! I didn't even know they

could do anything or even diagnose so early. (You wrote that her

original curve of near 30 degrees was determined when she was 3 or 4).

That is so amazing that they can catch it so early and watch and try to

correct. Your daughters are very lucky to have you and to be such an

advocate for them.

Debbie

On Fri, May 22, 2009 at 3:13 PM, <sdvdw@...>

wrote:

Hey gang,

Just thought I'd share something I'm excited about. My 13 1/2 year old

daughter just went to her back dr., and we found out that she is going

to

be able to wean herself off her brace during the next 3 months. She

measures around 10 degree curves (which is way down from the original

near 30 degree curves when we started the journey 9-10 years ago).

Our other daughter hasn't had as great of results, hers is still around

25 degrees and the dr. is thinking she might need to go into a Boston

Brace (from the Providence nighttime brace) this fall. She's only 11

years old, so we are hoping her results improve with time and diligence.

For now we are celebrating with our 13 year old, though. It's been a

long haul.

Thanks for listening!

Diane VDW

Michigan

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