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mamakaren
23rd May 2005, 05:44 PM
Hi everyone. My name is Karen and I have a 7 1/2 year old daughter who was just diagnosed with scoliosis. Her pediatrician noticed it with that bending over test and ordered X-rays (only after I insisted) and it turns out that her curvature is 15%.

From what I've read that is quite mild but given the fact that she is very small for her age and has 10 more years of growing to do am I correct in assuming that this will likely get worse over the years?

Of course I am very worried as is my husband. We have an appointment with an orthopedist in 2 weeks. What can we expect? Any responses will be much appreciated.

Thanks,

Karen

Abbi
23rd May 2005, 05:52 PM
Hi Karen! Welcome to SSO! You have come to the right place anyways - glad u found us :D :jump:

I'm sorry to hear that your daughter was d/n with scoliosis - it is a real shock isnt it!

I'm sorry but I cannot help you much with your Qs (I am a book of random and useless knowledge) I was d/n just last year, and therefore have no knowledge of infant scoliosis!

15% is quite low, but you are right in saying that it can get worse.....I am really not sure what to expect - he may tell you to come back in 6mths and check how she is doing, and if needed decide on a course of treatment (if any)

I really hope it goes well for you - if you do have any other questions i iwll try to answer them!

Abbi x

tonibunny
23rd May 2005, 06:01 PM
Welcome Karen! :welcome:

I am sorry to hear that your daughter has got scoliosis, but am glad that you have found us. Hopefully we'll be able to help keep you cheered up and answer any questions you have.

It sounds as though your daughter has Juvenile Idiopathic Scoliosis - do you know if this is correct? This means that it has happened with no known cause, and is not down to any structural abnormality that has been present since birth, as is the case with Congenital Scoliosis.

You are right - curves usually do progress as a child grows, but with a curve of just 15 degrees your daughter is in a very good position to be treated successfully with a brace IF her curve does progress. This would aim to hold the curve and prevent it from getting worse. Your orthopaedic specialist might even suggest that your daughter's case is just observed for now, with regular checks, but no need even for a brace.

Take a look at Sealy's posts; she is currently considering various bracing alternatives for her young daughter who has a similar sized curve :-)

Whereabouts in the world are you? I'm in the UK, but we have people from all over the place here!

Welcome again!

Toni xxx

sins
23rd May 2005, 06:08 PM
Hi Karen,
It must come as a shock to you to have your daughter diagnosed with an orthopaedic condition.I think at this point your consultant will observe the curve carefully and brace her at the first signs of deterioration.there is no way of knowing for sure if the curve will progress,she may be one of the lucky ones who have minor scoliosis which is non progressive.Try just to take each day as it comes and try to explain to your daughter a little about her spine and why she needs to see a doctor.
You're very welcome here and feel free to ask anything that crosses your mind.
Sins

mamakaren
23rd May 2005, 06:08 PM
Thanks,
Yes, I do believe that juvenile idiopathic scoliosis is what she has. She has no known birth defects and has developed normally in every way since she was born. I will check out Sealy's posts--thanks for the tip.

Do you think she will definitely need a brace with a 15 degree curve? I need to learn more about braces because to me I imagine a terrible contraption that will limit her movement and make her feel different from the other kids. This is very new news for us and we are still processing it all. I feel like there is something I did wrong to make this happen? Was her mattress too soft? Was it something she ate or didn't eat? I know that's silly but I blame myself.

We live in Wisconsin in the US--about 3 hours north of Chicago.

Thanks for the support--I am sure I will be checking back here often.


Karen

mother to Martha age 7 1/2 and 2 little boys ages 5 and 1

tonibunny
23rd May 2005, 06:18 PM
Hi Karen,

It's unlikely that she'd definitely need a brace; only, as Sins says, if the curve shows signs of deterioration. 15 degrees is only a little curve really, and smaller curves are much less likely to progress than bigger curves are.

PLEASE DON'T BLAME YOURSELF!!! "Idiopathic" means "Of no known cause", and scoliosis is almost certainly not caused by soft mattresses or diet. Sadly, it just happens.........there is no way it could be your fault.

Toni xxx

Amazed Jean
24th May 2005, 12:11 AM
Hello and welcome to the sight. Another SSoer from this side of the pond is a definitely a welcome addition. You've come to the right place. There is always a source of comfort available here. Several children and their Moms as well as the rest of the lot of us. I am Jean (amazed) and doctors are now guessing that I have Idiopathic Juvenile Scoliosis. However for various reasons I have never had surgery or bracing. (Not a good idea). First advice is Look in the mirror and tell yourself you are a GREAT Mom and you are doing exactly what you should be doing - getting help for your kid. Second advice Get a notebook and write down stuff as it occurs and keep track of your questions. Try to get copies of everything xrays, tests and what the doctors write down after your visit. If you ask all of it is easy to get. What I learned over the years is that hospitals, clinics and doctor's offices lose stuff all the time. You are the best kept record for your child. Try to relax and get some you time.You're doing great!

Jonny
24th May 2005, 01:13 AM
Welcome to the family Karen :wave: I'm afraid I'm across in England :-D I'm 17, had surgery for adolescent idiopathic scoliosis in the summer and March and am recovering well.

It sounds like you've caught Martha's scoliosis INCREDIBLY early and if it's monitored, and controlled if necessary, she should find herself with very little scoliosis at adulthood. It's certainly not your fault! You're doing so well already making sure it's looked at properly, and idiopathic scoliosis could never be someone's fault.

I should imagine the consultant will either decide to monitor her curve for a few weeks or put her into a gentle brace to guide her spine. If she's lucky enough to have a stable (maybe non-structural) curve it may be that she can go without treatment :-D obviously it's essential you keep it monitored though.

Jean's advice about the notebook is very good. I'd like to add: always let a consultant do his stuff. It's fine (and a good idea) to make sure you know exactly what he's doing and why he's doing it, but 999 times out of 1000 they do the very best thing. That's not personal, it's for all scoliosis parents: keep it in perspective :-)

If he does decide to put Martha in a brace, don't worry - modern braces, especially for such small curves, will fit invisibly under her clothes and they can be uncomfortable at first but they soon adjust to them. The younger they are, the easier it is for them to adjust. You don't even need the rest of her class to know :-)

Hope to see you around the site!

Marti
24th May 2005, 04:22 AM
Welcome to SSO! my name is martha too (best name out there!), and i'm 16. I'm from chicago. Are you going to Children's by any chance? that's where my orthapaedic surgeon is. I see Dr. Sarwark and he's amazing.

As everyone else said, it sounds like you caught her curve quite early. that's very good, becuase a 15 degree curve should be quite managable.

mamakaren
24th May 2005, 06:51 AM
Wow, thanks so much everyone. I really appreciate the calm and welcoming words. Marti--so glad you like your name. We love the name Martha--it is a very strong name--just like our little one.

It is good to hear from you all that 15 degrees is manageable. I loved the concept of a "gentle brace." It sounded much less scary when phrased that way. I know that it is unusual for a child of her age to have any curvature at all and that there is a significant chance of progression, but still it is good to know this early when there are many options open to us.

Her pediatrician, after noticing that her back was uneven when she bent over, said to just wait until next year and then see how it looks but that didn't sound right to me. I could see the unevenness easily and I am no medical professional. I bothered her until she agreed to order an x-ray and then she was very surprised that the curvature was 15 degrees. I wonder if I had just taken her advice and ignored it if it might have gotten worse without us knowing. My first lesson in being pro-active I guess.

Anyway, thanks again for the reassuring and kind words. I know that her problem is minor compared with some on this board--but to me as a mom it is a real worry. Thanks for understanding.



Karen

aka Martha's mom

Sealy
24th May 2005, 03:14 PM
Hi Karen, :wave:

I can understand how concerned you must feel. The prognosis for progressive infantile and juvenile scoliosis is not a good one according to most literature. I think it has to due with the tendency for vertebrae to become stiff and rigid over time. There is great potential for spinal growth until maturation so therefore the spine can become greatly deformed if it's not held in check. If I remeber correctly, orthopaedists will look to see whether there is a family history of scoliosis with a bad outcome i.e., surgery - if so - then it's quite possible that a brace will be prescribed straight away. With bracing, the " goal" is to keep the curve below 10 degrees - I've been doing some reading on juvenile scoliosis recently since my daughter is now in the juvenile group. We've been battling scoliosis for the last three years with serial casting, and I'm happy to say that we survived the infantile period with remarkable success. :rox:

Oh, I was wondering who measured the cobb angle for you ? Was it the pediatrician ?



Sealy

mamakaren
24th May 2005, 04:02 PM
I don't know who measured the Cobb angle. I was assuming it was the radiologist. We will be bringing the x-rays to the orthopedist so he will measure them also.

Sealy, how old is your child and how was her scoliosis diagnosed? How severe is her curve?

The only scoliosis in our family is that I remember being told in gym class in high school that I had scoliosis but nothing ever came of it--it was not severe enough to treat in any way and it never progressed. Although I was done growing by the time it was diagnosed. As I mentioned, my daughter is only 7 and is small--in the 20th percentile for height. So she has a whole lot of growing to do yet.


Karen

Sealy
24th May 2005, 07:47 PM
The radiologist should have calculated the curve correctly. The reason I asked was because you said that you could see the "uneveness" easily. I wasn't aware that a 10 - 15 degree curve was easily detectable. I guess it's possible if you're looking for it. :???:

I'm all for gentle, effective braces - I wish there were more out there. I spoke to the othotist at our hospital this morning and apparently they were doing a study on the effectiveness of the SpineCor brace at Sick Kids in Toronto a couple of years ago, unfortunately when the company was sold to Biothorex in England, the Co. in England abruptly pulled all funding for the study at Sick Kids :soapbox: The only way to get that brace will be to travel to Montreal and see Dr. Rivard (one of the co-inventors of the SpineCor brace). That would mean I would have to sever ties with our current ortho, which is something I'm NOT prepared to do since he has done so much for us. So..... has anyone heard about the TriaC ( sp ???) brace ????

Sorry, I went off topic....Deirdre is 4 1/2 and I discovered her scoliosis three years ago while giving her a bath. Her curve was detected very late, it was quite severe... 60 degrees ( although I calculated it recently and it looks more like 50 degrees - who are you going to believe, me or the orthopaedic surgeon ? :-D ) Her x-ray pictures are in the gallery.




Sealy

Jonny
25th May 2005, 12:38 AM
On thin children you'd definitely be able to detect a 15 degree curve, as you can see the line of the spinous processes. The Adams forward bend test will show up a small curve like that on anyone, and that's a routine part of a lot of medicals, so don't worry, just because it's detectable doesn't mean it's larger than they said.

As there's no specific number of degrees that they try and keep the curve to when braced (the aim is as low as possible for as long as possible), there's an evens chance that he'll put Martha in a brace straight away just as a precaution, and if it's so flexible and nonstructural it straightens to even less, you might get away with the brace coming off immediately and the curve just being observed.

Sealy's daughter's curve is now being held in a cast at about 10 degrees :-)

Sealy, I wouldn't worry about that discrepancy (between 50 and 60) as it is said measurements have a tolerance of 5 degrees anyway, so one person could measure a 55 degree curve as 50, and another as 60. In any case, a curve of that size at that age would progress rapidly untreated, and it's over the threshold.

Liv
25th May 2005, 12:44 PM
I was 9 years old when I was diagnosed with a 20-22 degrees scoliosis. These are my first x-rays: http://img.photobucket.com/albums/v39/Livk...SSO/08-1992.jpg (http://img.photobucket.com/albums/v39/Livke/Scoliosis-SSO/08-1992.jpg)
I was braced for a couple of years but my curves were very progressive and I had a huge growth spurt when I was 14/15 years old so I ended up with a surgery.

Usually the politics are:
<20 degrees: observe
20-40 degrees: brace
>40 degrees: surgery

But it really depends. There are curves that almost don't progress and don't need any further treatment. Good luck, Karen and Martha! :niceone:

Amazed Jean
25th May 2005, 01:19 PM
Mamakaren, I was up to the Twin Cities Spine Center last summer and I saw lots of braced children and adults. I saw Doctor John E. Lonstein . He has been published over and over again and I hear he wrote the most comprehensive text book used all over the whole world for scoliosis. He couldn't help me at this point but I talked at length to both Dr. Lonstein and his nurse Darlene Swanson before we left. When I commented on how many children I saw there, They gave me a copy of a little book called "Zoey and Her Brace". Its a picture book of sorts to read to young children about being braced. You might try to get a copy of it. Its reassuring that someone is worrrying about what is going on in scoliosis kids' minds. The phone number listed on the book is 651-291-2848 or Twin Cities Spine Center is 612-775-6247.

Sealy
25th May 2005, 04:05 PM
Thanks Jean ! I might try to get a hold of that book.


Jonny, I know this is JUST a minor thing but ahhhhh......her curve is presently closer to 10 than to 15 :-o I know you're probably going to say "who cares !!! five degree margin of error !!!!" :-D I'd rather you erred on the low side. :P



Sealy


(Jonny: sorry, my mistake :oops: have corrected it.)

andrea
25th May 2005, 08:51 PM
Hi Karen

Sorry for my late welcome to the site. My daughter is 2 and was diagnosed a little over a year ago. She has been in plaster jackets ever since, which are holding the curve so far, but not improving it as much as we had hoped. I can totally understand your worry and feelings of guilt. I won't tell you not to worry and not to feel guilty as I know it won't work and you will anyway, but it really is nothing you've done wrong.

Keep in touch and let us know how her appointments go and what her ortho says.

Andrea
x

mamakaren
26th May 2005, 05:54 PM
Hi everyone,

I will definitely check out the Twin Cities spine Center. We are only 5 hours from the Twin Cities. At this point I feel like we are in limbo. I have this feeling like these next 2 weeks are going to be Martha'slast weeks "before scoliosis." What I mean is that she is pretty unaware of what's going on at this point and is just enjoying her last few days of school without a care in the world. There is really nothing to be done until June 9 when we see the ortho so I'm trying (unsuccessfully) not to think about it too much.

My husband and I have decided that no matter what the ortho says we are going to get a second opinion from a juvenile scoliosis expert. Whether he says it's no big deal and nothing needs to be done or he says she needs a brace ASAP we won't follow the treatment plan without consulting someone else either in Madison, Milwaukee or the Twin Cities who has a specialization in juvenile scoliosis.

I'm sure I'll be checking back often and will let you know what the ortho thinks.


Thanks for the support and advice,

Karen

mamakaren
9th June 2005, 04:37 AM
Hello everyone,

Martha's first appointment with the orthopedist is tomorrow morning. I will let you know what he says. Martha isn't worried a bit. She's just glad this has nothing to do with the wart on her big toe--according to her THAT's her real problem. Wish us luck!

Karen

sins
9th June 2005, 10:37 AM
karen,
Good luck tomorrow and I hope it all goes well.You're also right to get a second opinion.martha sounds like a cool and calm little lady and I'm sure she'll sail through it.I was her age when I was diagnosed with a 45 degree curve.I have only a vague recollection of something being wrong with my back.I remember thinking it was something to do with one arm being longer than the other. :-D
Allowing her a real childhood and not letting her see your concern is the best thing to do.Just take care of yourself and we'll be here for you,
Sins

mamakaren
10th June 2005, 05:21 AM
Hi everyone,

The appointment went well. The doctor was very thorough and gave Martha a battery of neurological tests designed to rule out some pathological reasons for the scoliosis. She passed them all and I'm not sure what they were even looking for but she showed no signs of motor delay or neurological issues.

He told us that at this point he would recommend waiting for six months to see if her curve progresses. If it does, then she will need an MRI (to look for spinal cord issues?) and then maybe a brace. But he also said there is a chance it will not get worse and possibly even get better. He said it could go either way and there was no way to really predict what would happen. It was the first time we really saw her x rays. Her spine looks like a gentle S and her right shoulder is slightly lower than her left. It was very obvious and kind of sad to see. He did say that her condition was quite rare in a child of her age and that it definitely warranted close observation.

He was sceptical of any "alternative" therapies like chiropractic manipulation or what have you but recommended any activities that would strengthen her core muscles. So I guess we're still in limbo. I still want a second opinion but also don't want to stress Martha out unecessarily. Not sure what to do at this point. . .

Karen

newgirl
10th June 2005, 05:48 AM
Hi Karen,
i seem to have missed your post previously, my daughter is only 20 months and is currently in a brace for an approx 37 deg curve.
Your appointment does seem to have been very thorough. I am not very well up on juvenile scoliosis, so I can't really give you any proper advice.
When Niamh was diagnosed at 9 months we were told the same by our consultant that, there was no way of predicting how a curve would progress or regress in a growing child. However he followed her up after 6 weeks and then every 12 weeks, to monitor the curve. Her curve did not get any worse but her ribs were growing very asymetrically so after 9 months of follow up he put her in a cast. She is now in a brace because we are in the US temporarly but she should be back in her cast in August.
I suppose what I am trying to say in a very long winded manner is that I would personally prefer if she was more closely monitored than twice a year. 6 months is a long time for a growing spine and whilst it is very possible that Martha will show no progression or even improvement in that 6 months there is the possibility the curve could increase. I think I would try for a second opinion or discuss the possibility of more frequent follow up with your current dr.?
Some of the others here have way more knowledge on juvenile scoliosis than I have so they may have some suggestions as well.
Nicola

sins
10th June 2005, 12:15 PM
Hi Karen,
the six month waiting period to monitor progression is not unusual.
her curve is 15 degrees and at that size may not even progress.
Keep a close eye on her yourself and if you notice any change then contact the doctor and bring your appointment nearer.
Also if you wish to get a second opinion then time it well.Make your appointment for three months time and you can see if the curve progresses in that space of time.
A Surgeon will not subject a child to bracing without a sound medical reason and that's just their way of justifying the wait.
In the meantime, try and keep from stressing yourself out about this.
The hardest thing for parents who have to deal with their children's scoliosis is that it's a long term condition and treatment(if required) takes place over several years.There is no immediate quick fix.It's important for you that you use whatever support networks are available to you to help you cope with your worry and frustrations.That's why we'r here where you can feel some empathy with other parents dealing with similar situations.
Sins

mamakaren
10th June 2005, 05:58 PM
Oh dear now the panic is setting in. I am here at work and instead of actually doing my work I am frantically doing searches on juvenile scoliosis. This site from an orthopedic textbook has really got me worried:

http://www.wheelessonline.com/ortho/scoliosis_in_juveniles

According to the studies here, ALL children under 10 with scoliosis should have an MRI as a matter of course. I had no idea that there were so many neurological conditions and diseases associated with so called "idiopathic" scoliosis. Maybe she should have an MRI right away. According to this many of the problems cannot be diagnosed without one.

My husband doesn't even want to think about this--he is very happy that the doctor said he doesn't want to do anything but observe Martha and he wants to leave it at that. I feel so worried and unsure of what to do right now.

Karen

sins
10th June 2005, 07:32 PM
Don't panic Karen,I've read that article.It's usually only in the case of a progressive curve and mainly left curves that this syrinx ocurs. Most cases of juvenile scoliosis are simply of unknown cause.Does her spine curve to the right?
That article also suggests that juvenile scoliosis will progress slowly in most cases(if it progresses at all) and until the teenage growth spurt it won't run out of control in the majority of cases.
I totally understand how dreadful it must feel right now when there are no absolute answers.
I can't imagine that any surgeon would treat a 15 degree curve aggressively.Also the chances of your little girl having any major spinal disorder like the one's you've read about are remote.
My daughter is exactly the same age as yours and I know what it's like to worry over children.The best thing you can do for her is exercise .if she can swim that would be good for her to strengthen her back muscles and she'd enjoy it.
A 15 degree curve is not a major asymmetry.Even if it does progress slightly as her spine is so flexible,she should respond well to bracing.
It's remarkable that you caught it in such good time.Many children's spines are curved to a far greater degree when they're diagnosed, so you should stop being so tough on yourself and instead congratulate yourself on being such an observant mother.You're doing a great job even if you don't think it at the moment.
For your own sake and to put your mind at rest I think get your second opinion if the insurance pays for it.Then you'll be satisfied if the second expert agrees with the first.
Sins

sins
10th June 2005, 07:54 PM
karen,
Perhaps this may help to put your mind at rest.There's a wonderful US based website called NSF (National Scoliosis Foundation).They have a webpage with some excellent medical resources.They have a fine article on mild curves and how to treat them.
http://www.scoliosis.org/resources/medical...ildcurvesqa.php (http://www.scoliosis.org/resources/medicalupdates/mildcurvesqa.php)

Note especially the following paragraph.
Once a youngster has been diagnosed as having a mild curvature, what steps should he or she take?
A: It will depend upon the size of the patient's curve and the growth status. A young patient (6-8 years old) with a very mild curve (15 degrees) might only need to be seen once every 6-12 months since the risk of progression is low

mamakaren
10th June 2005, 07:58 PM
Thanks so much Sins, for the reassurances and for the link. I will read it over the weekend (while AWAY from work!) There is so much to worry about when you have children, and it's hard when anything is wrong. But I know that the fact that we caught this so early is really in our favor--no matter what happens.


Thanks again,

Karen

Sealy
10th June 2005, 08:44 PM
Karen,

I think the probability of your daughter's curve increasing is something like 20 %. Since I've been through hell and back :cry: I'm of the opinion that it's easier to treat a very small curve than one that gets out of hand. Once a curve gets beyond 30 degrees, it becomes very difficult to treat. Here's an excerpt from an article I came across:

CLASSIFICATION: Idiopathic scoliosis occurs at three separate developmental time periods with different characteristic deformities and prognosis.

Infantile: Occurs between birth and 3 years of age. Usually noticed in the first year of life. More common in boys particularly from England. Left thoracic curve occurs more common, and often resolves spontaneously. Few patients will have progressive curves which can be quite severe requiring early bracing and even surgery.

Juvenile: Occurs between 4-10 years of age. Incidence is equal for boys and girls. Most curves are right thoracic. Curves are progressive in nature and need close follow up.

Adolescent: Usually diagnosed at the age of 10. Most curves are right thoracic and thoracolumbar. Curves have a strong tendency to progress during adolescent growth spurt. Extremely active, athletic teenage girls with delayed menses are most of risk for curve progression.

CURVE PATTERN:
Right thoracic curves are most common. They can develop rapidly and must be treated early or severe cosmetic deformity. Cardiopulmonary compromise will ensue when curves reach 60 degree. Thoracolumbar curves are also common. They are usually not as deforming. Lumbar major curves are less common. Most (65%) are left lumbar curves. They are not deforming but can lead to disabling back pain in later life and during pregnancy.

NATURAL HISTORY:
Lonstein & Carlson (1984): 729 patients with idiopathic scoliosis of less than 30 degrees were followed without bracing. Likelihood of progression of a thoracic scoliosis was compared with curve magnitude and Risser sign.

Scoliosis Risser Chance of Progression


<19 0 or 1 22%

<19 2,3 or 4 1.6%

20-29 0-1 68%

20-29 2,3 or 4 22%





Sealy

newgirl
10th June 2005, 09:30 PM
Karen,
i hope my post did not add to your panic :woe: like I said I have little knowledge about juvenile scoliosis.
Hope the info thevothers have posted will calm your fears.
Nicola