need advice for my 11 yr old

[ldwest]

Hello, first I would like to say I have scoliosis and have had 6 surgeries including 3 sets of rods all as an adult. I am in pain almost all the time. I was never braced though they spotted a slight curve in 7th grade by 9th grade it was too curved to brace. Then my mom sent me to a chiro for a few years. Just a little background on myself leading up to my daughter.........she will be 12 this month. I noticed a slight curve and took her to her primary dr. he ordered xrays; you have to do them at the hospital ( I did not get to see the xrays ) and I recieved a call from the dr.s office later that week saying that she has a mild curve(no measurements) and to come back in 6 months. My worries are that with my background that if we are not aggressive enough on watching and treating this it will be too late like it was for me.

I would love any advice. should I wait 6 months or call him in 3 or 4 and tell him I can't wait anymore
should I just go ahead and make an appt with a specialist now?
though I have alot of experience with my adult scoliosis and revision surgeries all this is very new and scary with my daughter.
I do not want her to suffer like I have and still do!

[RitaR]

Hello there, I would have no question in my mind, but if it were my child I would not wait any time at all. I would seek out my specialist and get her in to be seen very quickly. No sense waiting until it only gets worse and then you wish you had gone sooner. We as mothers never wish any of our pain on our children if we can keep from it - and if you go see the specialist and he says to wait then you will know. But, if he says you should have gone sooner you have no way to undo that. Just my thought here. I can imagine your frustration in finding out your daughter may suffer the same problem you have. I wish you the best of luck. I, too, suffer the agony every day all day and am very tired of it. Surgery in July - very long time to go yet.

[mariaf]

Hi Idwest,

I agree with Rita. You have nothing to lose by taking your daughter to see a specialist now. On the other hand, if you wait it "could" mean losing precious time.

If you need a referral to a good specialist close to where you live, I'm sure those of us on this site can help you.

Good luck!

[leahdragonfly]

Hi there,

I'm sorry to hear about your daughter's back. I agree completely with Maria, there is nothing to lose by seeing a specialist right away, and everything to gain, including knowldege. You do want to make sure you find an orthopedist who specializes in spine/scoliosis, preferably a pediatric spine specialist.

In the meanwhile, you can and should request a copy of your daughter's x-ray report. Check with the Medical Records Department of the hospital. It will/should list the cobb angle, which I would want to know. Also, contact the radiology department at the hospital for a copy of the x-rays on CD. You have every right to obtain a copy of the report and images for your personal records. Then when you go to see the orthopedist you can take along the CD so she/he doesn't have to repeat the x-rays.

I have heard many instances of differences in cobb angle readings by radiologists who read all types of x-rays vs orthopedists. I would trust the orthopedist's measurements the most, since this is what they look at all day long. And I think once you find the right orthopedist you will find that they will be quite interested in your history, too, as an additional consideration in your daughter's situation.

So good luck, and let us know how things are going.

[jrnyc]

i think it would be best to take her to a specialist..that way, you will never have to 2nd guess yourself...better be overly cautious than not enuf...& i dont think you will be overly cautious! i think it will be best to have reassurance of a specialist...so if a specialist tells you not to worry...you will feel more at peace!!
but that is just my opinion..

jess

[laurieg6]

I would definitely make an appointment with a pediatric orthopedic surgeon to get a real baseline for your daughter's curve(s). She is probably about to go through a growth spurt, if she hasn't already so I think it's best to get accurate measurements now. As you know, the earlier treatment of some kind is initiated, the more options you potentially have. It might even be a few weeks or months until you can get in with the specialist(s) of your choice.

I wish you all the best with your daughter's care and well-being (and yours)!

[michael1960]

Hi

I agree with everyone, see a specialist now.

Your daughter may be at the greatest risk of curve progression during her growth spurt years, which on average are 11-13, but it can vary. During this period of time a mild curve can progress significantly. My oldest daughter had a slight curve about the same age and we were fortunate that it never progressed. However, I have a younger daughter (8) that increased from about 20-25 degrees all the way to 35 degrees (10-15 degrees) in less than 4 months.

I would hope that a specialist would recommend monitoring it every 3 months, not 6 months during these high growth years.

The other caution is that most medical doctors like to follow the wait and see approach until the curve increases above 20 degrees. So there is usually not an immediate action taken or recommended until it reaches 20 degrees. Then around 20-25 degrees they will begin to recommend bracing. Many on this forum, had we had a chance to do it over again, would have taken some action, probably some type of bracing, before 20-25 degrees.

If your doctor does not recommend bracing you should ask him whether you should at least consider night-time or part-time bracing. At least you can get his/her opinion on it. I would also let him know that your goal is to keep it below 20 degrees, so waiting until it reaches 20-25 degrees would not accomplish that goal.

I would be interested on this forum, especially from some people much more knowledgeable than me, what they would recommend if the curve for a 12 yr old girl, is 5, 10, 15, or 20 degrees? 1. wait, 2. brace part-time, 3. brace full-time, 4. other action.

For me, personally, if it was less than 10, I would probably monitor it very closely, at least every 3 months, but if it is greater than 10 or as much as 15, I would probably consider night-time or part-time bracing or even full-time bracing (because she is 12). You can also monitor her growth (height) during this period of time on your own, and if she is growing a lot, you may want to monitor her very closely. Some studies show that there is greatest curve progression during times of greatest growth.

There are also studies that if the curve can be maintained below 20 degrees during the growth spurt years, there may be a better chance surgery can be avoided later, but once it gets over 20 degrees the potential of needing surgery increases.

I hope this is helpful, but you are getting some great advice from other members, who I have received advice. I wish I would had been as proactive as you are at this time to reach out and ask others for their recommendation.

One thing I have learned is that while a doctor can say one thing (like my doctor suggesting to wait and see) in the end, we as parents, need to do what we think is best. In the end we need to take all the doctor advice, all the recommendations and experiences from these forums, and all of our own research and put together a plan that we feel is best for our child.

I hope this is helpful. Good luck and keep asking questions. You cannot ask too many questions. And again, there are others on this forum much more knowledgeable than me so please look to many of them who have been through this for many more years. It is all fairly new to me and I have a lot to learn.

Michael

[ldwest]

Thank you so much for the responses. Motherly instinct has already told me to make the appt with the specialist. I just also wanted the push from you guys. I am going to call asap and make the appt. we had 22" of snow sat so not sure if they will open monday. My daughter and I have talked about it and she has watched me suffer so much over the years. She said she would definately wear a brace if it would lessen the chance of sugery down the road. It's funny(not literally) how it is sooooo much more scarey for me when it is about her and not me. I'm just worried sick. Thank you so much for your advice.

[RitaR]

Besta luck to you and your daughter and please keep us posted.