spinecor

[WNCmom]

That's great news, Jill. It must feel so good to know the curve is reducing.

And thanks, everyone, for all the info about Montreal.

Mary Ellen

[stephanieC]

Wow!!

Wow Jill,

That is awesome news about Katie!! I am so happy for you!! You must be through the roof delighted!!

Does Katie still have to wear the brace for 20 hours a day or will she be able to cut back a bit on her hours in brace? Does the brace even bother her anymore?

I am so happy for you guys. I know you are breathing a sigh of relief. I hope you have a chance to enjoy Montreal a bit.

awesome news,
Stephanie

[rtremb]

Great news Jill. You must be so happy.
Ruth

[alabama mom]

Jill..
I am so glad to hear how great your appointment was. I hope that we all may have such good results.
Nancy.

[MATJESNIC]

Jill,

I am so happy for your good news!!!

[cherylplinder]

Jill!
I am so excited for you! That's fantastic!
Hugs!
Cheryl

[desheah]

hi everyone,

as jill already mentioned, we got to meet her family which was wonderful. katie seems like a real trooper.

our news isn't quite as wonderful, but not awful either. lucas' #s are up a bit, but then again, he grew 3 inches in the last 5 months. yikes! dr. rivard and dr. coillard believe that now it will be slow growth until 10 yrs old. perhaps we can even gain back some ground with the slower growth.

i'm beat and need to get back to work . . .

my best to everyone,
deshea

[Celia]

Jill, Amazing news!!! I'm so happy things are going well.

Deshea, You failed to mention one little detail The numbers? They went up, how much? A few degrees is nothing to worry about but 10 degrees is a different story. I hope it's the former and not the latter.

[jillw]

Deshea, 3 inches of growth in 5 months? Wow! I do seem to recall that at Lucas' age a fair amount of the growth is within the spine and then somewhere around 6 or 7 the growth of the spine slows down until the dreaded pre-adolescent growth spurt. I'm sorry his numbers went up - I hope it wasn't by too much and hopefully they will stabilize for the next several years.

I know you had a longer drive back than we did and a later appointment so you must be totally exhausted. Take care!

Everybody else, thank you for your kind thoughts! I was very happy to hear the news but am afraid to let myself feel too happy because I know we have such a long journey ahead of us and anything can happen- know what I mean?

Stephanie, Katie still needs to wear it for 20 hours a day. I don't think they reduce the time until they are weaning you from the brace (although I could be wrong). She has adjusted to wearing it quite well - although she still has her moments as to be expected...in reality she has been wearing it closer to 22-23+ hours most days because its almost easier to leave it on and since she can participate in dance class and all the other physical activities with it on. Starting in the Fall is a good time since we don't have to worry about a lot of swimming time and such. I don't know what we'll do next summer if she goes to girl scouts camp again (she can't put her brace on by herself and I'm afraid she'd lose it if she took it off while she was there)

[stephanieC]

Jill,

I am very happy for you and Katie!! Now you have to update your signature with the good news!! Those numbers are awesome.

Hugs to you,
Stephanie

[stephanieC]

Hi Jill,

Just saw your edited post. yes, I could see how the summer would add a bit of difficulty with swimming and camp and what not. I bet you will get really great advice from all the moms who have been through the summer months with spine cor. Besides all the support we get here at the forum, advice is the next best thing!!

Best,
Stephanie

[jillw]

Christine2, I was re-reading some old posts and saw your post from several months ago about trying physiotherapy and your plan to have the therapist speak to Dr. Rivard. I was just curious, whatever came of that? (both from the point of view of what Dr. Rivard had to say as well as whether she is still receiving therapy and how you think it is going?)

thanks! Jill

[stephanieC]

Hi Desheah,

I know you from the stapling forum also

I am sorry to hear that the numbers are up a bit for Lucas. I hope it was just the growth spurt and things will correct a bit over the coming months. Scoliosis is frustrating and at times feels so defeating, but as you know from the stories here, the children always seem to triumph!!! We just need to guide them down their best path!

You must be exhausted! I wish you a hot cup of tea, a pillow to put up your feet, and the time to enjoy the relaxing moment!!

Hugs to you and to Lucas,
Stephanie

[qiling]

Jill,
That is a great news.

Ruth,
Jennifer's appointment is Nov.22 at 3:15pm with Dr. Rivard due to Thanksgiving break in UAS that way she would not miss any class.

Mary Ellen,
I got a one month an appointment when I called,but I asked for a change so we have one on Nov.22 with D.Rivard and Nov.23 with Dr.Moreau.They very good on retuning phone calls and emails.
Dr.Morau is a molecular biologist who does the blood tests(the tests are free) to predict the risk of developing a scoliosis and the risk of curve progression as well as the monitor bracing efficacy.this tests are till in clinical validatoin do not have any treatment suggested yet.

Alain Moreau Ph.D.
Director, Molecular Genetics Laboratory of Musculoskeletal Diseases
Research Center , CHU Sainte-Justine
3175 Côte-Ste-Catherine Road,
Montréal, Qc, H3T 1C5, Canada
Phone: 514-345-4931 ext3476
Fax: 514-345-4801
Email: alain.moreau@recherche-ste-justine.qc.ca

Elaine

[desheah]

hi again,

i'm a little more with it today.

hi stephanie! nice to see you here as well. i'm a bit of a scoliosis board junkie. i'm sure i need help, but hey, it keeps me sane through all of this.

so lucas' #s are 24/18 which are more similar to when he first got the brace 1 1/2 yrs ago. as i said, since he grew so much, dr. rivard and dr. coillard thought further correction will be possible now that he's (hopefully) gone through his last growth spurt before the slower 6-10 yr growth.

yes, i'm definitely disappointed whenever there is an increase in #s. looking at the actual x-rays, i can't "see" the difference between this x-ray and the last one in june -- believe me, i've lined them up pedicle by pedicle. actually, dr. coillard did the measurements last time, and dr. rivard this time. i'm wondering if it is more the interobserver error here. regardless, i've sort of been in this too long to squabble with #s. instead, i'm trying to remain upbeat and get through this. go from one appt to the next with hope, but make sure of a back up plan if necessary . . . what can you do?

one thing of interest that dr. rivard and i talked about was the possibility of new and interesting fusionless surgeries by the time that lucas is 10 and older. i guess that some of them might be discussed on the srs website, but i have macs at work and home and need to get my husband to bring home his windows laptop some night to watch them. i guess dr. rivard was in europe (paris, madrid) recently and did a surgery where they fused the "single genetically deformed" (his words) vertebrae causing the scoliosis and since he doesn't believe in rotation in the other vertebrae since it is compensatory, did not fuse those vertebrae. i believe he said there are 12 cases done so far, but hopefully, by the time lucas is older and more and more, i'm thinking he might come to the point of needing surgery (and that is okay), they will have more data on this type of surgery.

of course, i worry about long-term bracing and the effects of that, but we're okay now. it is the norm for him. at least it is the spinecor brace and not a hard brace.

okay, long winded and mostly writing out my thought processes, but hopefully it makes some sense.

my best,
deshea