What to do next

[sgolych]

HI
I was hoping someone could tell me what I should do next.
My daughter who is 12 had just been told she has scolosis-- I didnt even notice it. But her back left side stick out quite a bit--- I FEEL bad as it seems like it just came up overnight and that I should have taken her to the Dr for more regualar check up and maybe we would have caught it.
Anyway I am reading alot about it-
She has been referred now to Sick Childrens Hospital in Toronto and her first appt isnt until APRIL !!!- I fear that it will get much worse by then !!! Right now I am not told much but that her cervage is at 40 degrees...AND WILL IT GET MUCH WORSE IN 3 MONTHS THAT WE HAVE TO WAIT !!

what should I do in the meantime to try and keep my worry down--- and we dont know what to expect-

We started going to YOGA together and some stretching exercises as I read that this is good for the muscles in the back.
She swims alot- does horse back riding, etc

Please some guidance in what I should do-- and does surgery look like its in the future !!

[scoliboymom]

Hi and welcome,
I remember all too well what you are going through, having just found out about your daughter's scoliosis. It starts to consume your life. But you have time to make decisions and educate yourself.
My son, whose curve at that time was 58*, was referred to Sick Kids as well and it was 4 months before his first meeting with the doctor there and that was only because of our very persistant family doctor. So you are lucky to be getting an appointment so quickly. Could be because they want to get her into a brace but having never dealt with bracing I don't know for sure if thats what will be suggested for your daughter.

My sons curves progressed very quickly but he was an extreme case and no one can predict what the case will be with your daughter. They need to have at least two sets of x-rays 3-4 months apart to begin to see a trend of progression. Even when my sons curve was at 64 the surgeon wanted to wait another 3 months to see if it would continue to progress rapidly. Because of his age (at the beginning of puberty) they wanted to let him grow as much as possible before surgery. His curves were already high and surgery was a sure thing. Your daughter is probably not yet in the surgery range. It will probably not be suggested until she is more like 45-50 degrees.

Don't feel bad about not having noticed her scoliosis before, I was the same and many other parents too. Kids that age are private with their bodies and unless you are looking for it and know what to look for its easy not to notice.
Now because of all I know I could spot someone with scoliosis a mile away.

Do you know who her doctor will be at Sick KIds? My son sees Dr. Zeller and we are very happy with him. I have heard the others are good too. If you have any questions about our experiences at Sick Kids I would be happy to talk to you.
Ramona

[proudmom2_2]

sgolych

I know how overwhelming it can be, but don't blame yourself. I would definately educate yourself as much as you can. I found this site not long ago and it has helped me tremendously! Everyone with scoliosis is unique and a lot of factors apply. The uniqueness determines what avenue you will want or have to take. Personally, I understand that it may take awhile to get in at Sick Kids and thats okay, but if it were me I would have her monitored by someone else (pediatric orthopedic sureon) until she can get in. That's a long time to wait. If shes premenarchal, she probably has some growth spurts still to come. My opinion since she's about a 40* is to get her braced so it doesn't get any worse. We found out when our daughter was 9, I didn't even know what scoliosis was, so don't feel so bad. At that time her curves were 18T/16L. She is now 13 yrs old with a 42T/28L, therefore, she has progressed over time. We have chosen to steer from surgery by bracing and treatments, fortunately, we have been able to do that, some aren't so fortunate. Currently, we are getting the Cheneau brace from Orthotic Solutions in Fairfax, VA. Then we will undergo treatments at the Scoliosis Rehab in Stevens Point, Wisconsin. The sites are orthoticsolutions.com and scoliosisrehab.com. I always found it helpful the more information I could get so I hope this helps you in some way. If you read on bracing on this site you will learn about other braces as well, such as the spinecor. Best wishes to you and your daughter. If I can be of any other help please let me know!
--Tina

[rtremb]

If you want to see a doctor sooner call Dr. Rivard in Montreal. He is an orthopaedic surgeon and invented the Spinecor brace. He will advise you whether or not the Spinecor brace will work for your daughter and he responds really quickly (usually within a day or so). We got our first appointment with him within three weeks. We live in Ontario too.

Dr. Rivard's email is: charles-hilaire.rivard@recherche-ste-justine.qc.ca

Spinecor website: http://www.spinecorporation.com/English/index.htm

All charges for x-rays and consultation in Quebec are covered if you are an Ontario resident through a provincial reciprocal agreement. You just have to fill out some forms at the hospital in Montreal.

They have x-ray equipment at St. Justine Hospital that emits little or no radiation too....the only one in Canada.

Ruth

[BETall]

HI
I was hoping someone could tell me what I should do next.
My daughter who is 12 had just been told she has scolosis-- I didnt even notice it. But her back left side stick out quite a bit--- I FEEL bad as it seems like it just came up overnight and that I should have taken her to the Dr for more regualar check up and maybe we would have caught it.
Anyway I am reading alot about it-
She has been referred now to Sick Childrens Hospital in Toronto and her first appt isnt until APRIL !!!- I fear that it will get much worse by then !!! Right now I am not told much but that her cervage is at 40 degrees...AND WILL IT GET MUCH WORSE IN 3 MONTHS THAT WE HAVE TO WAIT !!

what should I do in the meantime to try and keep my worry down--- and we dont know what to expect-

We started going to YOGA together and some stretching exercises as I read that this is good for the muscles in the back.
She swims alot- does horse back riding, etc

Please some guidance in what I should do-- and does surgery look like its in the future !!

Please go to: scoliosistreatment-schroth.com

[swimmergirlsmom]

sgolych,
I can totally relate to your feelings. My 14 year old daughter was just diagnosed last month with curves of 48-T, 35-L. After recovering from the initial shock, I did tons of research, have talked with lots of moms, and we have met with different specialists. The 2 ortho surgeons we met with last week said we should "wait and see" for a year, so we feel fortunate to have this chance to try non-surgical treatments. We have started our daughter with Schroth exercises and she will be getting a cheneau-type brace made next week. Lauren also swims alot, 2-3 hours a day, so she is very active and wants to try everything she can on her own before considering surgery.
Please send me a private message if you'd like me to share in more detail what I've researched and learned so far.
Take care,
Jackie

[Mom37]

I too have a daughter who has delt with scoliosis, and I too went through the same feelings as many being so anxious, and overwhelmed. Yes educate yourself. Don't be afraid to call other doctors. I recommend that if you can see another doctor earlier, I would. An earlier appointment would ease your mind, and then keep the second for another opinion. It took a third pediatric orthopedic surgeon to catch that my child had a spinal cord issue that caused her scoliosis after 9 months of rapid progression with bracing. Of course every child is different, so you need to do what is best for your child. Hang in there, as it is tough waiting and watching.

[BlueCrystalMan]

It's definitely not your fault for noticing... it's your pediatrician's job to notice... but regardless, it happens, and not overnight... so don't blame yourself. Just read, read, read... and work for the girl to make it right!!!

And definitely do your research... there are a ton of options... and a ton of opinions on each... so ask away... we're all here for you.

[scoliomom]

HI
I was hoping someone could tell me what I should do next.
My daughter who is 12 had just been told she has scolosis-- I didnt even notice it. But her back left side stick out quite a bit--- I FEEL bad as it seems like it just came up overnight and that I should have taken her to the Dr for more regualar check up and maybe we would have caught it.
Anyway I am reading alot about it-
She has been referred now to Sick Childrens Hospital in Toronto and her first appt isnt until APRIL !!!- I fear that it will get much worse by then !!! Right now I am not told much but that her cervage is at 40 degrees...AND WILL IT GET MUCH WORSE IN 3 MONTHS THAT WE HAVE TO WAIT !!

what should I do in the meantime to try and keep my worry down--- and we dont know what to expect-

We started going to YOGA together and some stretching exercises as I read that this is good for the muscles in the back.
She swims alot- does horse back riding, etc

Please some guidance in what I should do-- and does surgery look like its in the future !!

Please don't wait, as curves can progress quickly in early adolescence (sp?).. Research schroth therapy and the cheneau brace (to hold her curves and keep them from progressing)...
Much luck to you. I had a similar situation with my now 13 year old daughter ..

[Cloudy]

this may not help but i have to tell you
when i got my scoli knowticed they gave my a providence brace at 24* in 3 months i went to 53*
so i advise you to try to get an earlier apt. and research helps a lot !!!
if you cant get an earlier apt. then just have her do yoga and swim.

[Ballerina]

With Canadian healthcare the way it is, waiting is something that one with any medical condition must come to terms with. I have been waiting one year for this appointment that I have coming up, and having an appointment in April, being it at Sick Kids is very good. In Canada, it is a reality that a patient must wait months to get treatment. One this appointment has come, you can then be proactive in order to treat your daughter.

[cherylplinder]

My daughter's curves also progressed quite rapidly in 2005. She went from 18 degrees to 38 degrees in one year. She went from 18 to 24 from January to July and from 24 to 38 July to Jan 06. December 2005 she was 33 degrees, Jan 2006- 38 degrees. If they are in a growth spurt, the curve can change quite rapidly.

[The Slice]

Please remember that AIS is something that is usually noticed during the growth spurt of adolescence. It is thought (from what I understand) that the rapid period of growth may have something to do with why it happens, and also why it's more common in girls than in boys as the growth spurt in girls is usually faster. Because of the more rapid growth spurt, I would think that it's easier for girls to "fall through the cracks" in terms of being diagnosed early if they are only being checked once a year during a physical. If you read stories from others, you'll see that it's often times other things that result in children ultimately getting diagnosed such as a visible change in body shape, the way their clothes hang on them, etc. Don't blame yourself for not picking it up sooner, but know that you are on the right track by being proactive about it.