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julianemclean
4th May 2007, 12:24 AM
Hi everybody,
I'm new here and very confused to say the least. One of my daughters has been diagnosed with congenital scoliosis in her lumbar spine. It's only 21 degrees, but she's only 9 months old and as I understand the prognosis is a significant worsening of the curve. We've had x-rays, MRI, renal ultrasound and will have an ECG tomorrow. So far, there are no other congenital problems detected. Yey! Since there are no pediatric orthopaedists in Montana we're waiting to get in the Shriner's Hospital in Spokane, WA. From my research I understand surgery would not be recommended yet, but possible in the future. I don't want to just sit around and wait. We're working together with a wonderful physical therapist, since she also has significant vertebral anomalies ( clefts and hemivertebrae) in almost all of her vertebrae of the cervical spine, which resulted in her head being tilted to the right and the muscles shortening and tightening. As of now she can not tilt her head to the left at all. Do you know of any alternative treatments other than surgery or bracing that are effective and safe for congenital scoliosis?

tonibunny
4th May 2007, 12:36 AM
Hi there, welcome to SSO :welcome2:

I'm so sorry to hear of your daughter's scoliosis. I'm afraid that with the congenital vertebral defects that your daughter has, surgeons are all likely to agree that she'll need surgery before long. Braces or casts may be able to help "buy time", but this won't be as effective as with infants who have idiopathic scoliosis; her spine will not be able to grow properly due to the hemivertebrae pulling it out of alignment.

I'm sorry I can't be more positive, but it is really great news that she doesn't have any other congenital anomalies. I hope that you get an appointment at Shriner's soon, as it is vitally important that you get a specialist opinion asap.

Toni xx

julianemclean
4th May 2007, 12:41 AM
Thanks for the fast reply! Of course I'll do anything she needs to have the best possible outcome. Do you know of any alternative treatments to complement surgery or bracing? I've heard of so many, like Schroth Therapy, Bowen, CraniSacral Therapy, Raindrop Therapy, etc. Any experience with those? Do they work at all, and if yes, do they also work for congenital scoliosis?

GillyG
4th May 2007, 12:44 AM
Hi there :welcome:

I don't really have anything to add to what Toni has already said, she's our resident expert on infantile scoliosis - having been through years of casts, braces and finally surgery herself! - but I wanted to welcome you anyway and reassure you that you've found a very friendly, informative and supportive site. It has been a lifeline to me, I hope you enjoy it as much.

Gilly xx

tonibunny
4th May 2007, 12:58 AM
I'm afraid that none of these are likely to help a child with congenital scoliosis in the longterm. This is because the child has physical deformities in the vertebrae, or may even have some vertebrae missing. Alternative therapies simply cannot compensate for this. Hemivertebrae restrict growth on one side of the spine as the child grows, causing curvatures to develop, whilst missing vertebrae mean that the spine simply cannot develop normally.

However, to complement surgery or bracing, I'm sure that alternative therapies can work very well for all kinds of scoliosis. Physical therapies can help to keep the back muscles as flexible as possible given a child's limitations, and help lessen the amount of pain they may get.

Raindrop Therapy has been proved to be a con. Please read the following well-researched article on Gary Young here. (http://www.quackwatch.org/11Ind/young.html)

Schroth Therapy looks like it may be useful for idiopathic scoliosis, and according to the most experienced clinics in Europe, it should be done in conjunction with bracing. It isn't likely to help a child with congenital scoliosis because it is concerned with straightening and derotating to return the spine to "normal" - but children with congenital scoliosis do not have "normal" spines to begin with.

Bowen Technique could well help reduce pain and make your daughter more comfortable, as might any gentle massage therapy, though it's important that any therapist that treates her understands the nature of her congenital scoliosis.

I don't have personal experience of cranisacral therapy but I have heard that some patients have had good results with it, as far as pain relief goes.

I hope this helps :-) I'm sure there'll be more people along soon who will be able to give their own thoughts on this.

Toni xx

julianemclean
4th May 2007, 01:09 AM
Thanks! It's so hard to find a middle ground between grasping on to anything that sounds good but is a con and closing myself off completely and miss something that could improve her back. I'm just freaking out about open back surgery and all the complications....blabla....I'm a mess ;-)

GillyG
4th May 2007, 01:17 AM
Originally posted by julianemclean@May 3 2007, 11:09 PM
I'm just freaking out about open back surgery and all the complications....blabla....I'm a mess ;-)
Hey, don't beat yourself up about it, many of us have been there! It's a difficult enough decision to make when it's your own surgery, I can only imagine how much harder it would be when it's your child. You are doing exactly the right thing to look into complementary therapies, just be careful - there are some very unscrupulous people out there - and be sure to keep your daughter monitored by a spinal specialist as well.

tonibunny
4th May 2007, 01:17 AM
Hiya,

I know the prospect of surgery is very scary, but there are hundreds of us here who have had surgery and have come out smiling :-) Children bounce through treatment, you'd be surprised! It's often a lot harder on the parents than on the kids themselves :hug:

There's an excellent Yahoo Group for parents of infants with scoliosis, which some of our members belong to. I'd recommend checking out their information website which is here (http://www.infantilescoliosis.org/). Although the Yahoo group started as a place to discuss plaster casts as treatment for idiopathic scoliosis, there are a mixture of kids with congenital and idiopathic scoliosis there, and many of them are treated at Shriner's hospitals.

Toni xx

Amazed Jean
4th May 2007, 01:18 AM
Julie, Hello and welcome to the site.

julianemclean
4th May 2007, 01:59 AM
thanks everybody, keep posting if you have more info. Apprecciate your help a lot. I will check back later

ELLA22
4th May 2007, 11:57 AM
Hi
My daughter is 3 and has a number of abnormal vertebrae in her cervical spine and has a curve of 30 degrees in that area. She also has a head tilt which has now becoming more noticable. We have just seen our consultant who has said he want to try to hold off operating until she is 5. This is to give her as much chance to grow as possible. Is your daughter in any pain? Cerys gets a great deal in her shoulder.
I know what you mean about freaking out about the op. I'm trying not to think about it as I get myself really wound up. I feel a little better knowing that they won't be doing anything until she is a little older.
I'm glad to hear that your daughter is clear on the other tests. Cerys has a genetic syndrome which has caused some of her problems and we have just had a blood test to confirm her diagnosis. The geneticist is looking into whether the syndrome is responsible for the spinal abnormalities.
You've found the right place for support, everybody gives such good advice on here.
Bye for now
Ella x

sins
4th May 2007, 01:49 PM
Hi and welcome,
Alas I've never heard of any alternative therapy helping with congential scoliosis. Many probably feel very nice but will not reverse the curvature in any way.I'm afraid in progressive congenital cases, surgery seems to be a real option and in your child's situation we can only hope that the progression is slow or even non existent.
Allw e can do is offer support and friendship and somewhere to vent worries and frustrations.Please tell us how your little girl gets on over the coming months.
Sins

Rachie
4th May 2007, 10:24 PM
:welcome:

My daughter has scoliosis, so I know what you mean about freaking out! But once I got my head around the fact that she would be having surgery I came to realise that, actually, this is for her good. Well done for getting her seen so young, I was in denial and she wasn't diagnosed until she was 4. She is now nearly 7 and awaiting her first surgery this summer.

Keep logging on to this site, it really helps.

Rachie x

andrea
5th May 2007, 09:39 AM
Hi and welcome to SSo. I think all of us with little ones with scoliosis can relate to the freaking out episodes. We've all been there. My daughter has idiopathic scoliosis so I'm afraid I don't know much about congenital, but you've been given great advice already. Make sure that you are comfortable with the consultant you see. You will inevitably have to trust him/her to make the decisions as to what to do for the best and when, and you need to have the utmost trust in him/her. SUrgery is inevitable for us too, although I don't know when. Weare just trying to buy time at the moment.

If you have any further questions, fire away. There will always be someone along to answer them or offer some support. If you just want to rant about it all, please go ahead too.

Take care
Andrea x

scolioscott
8th May 2007, 10:58 PM
I don't know about congenital scoliosis either, but wanted to say hi.

I know the freaking out feeling though! I have now accepted surgery as inevitable and though my daughter is 12, I don't think it gets any easier, except she understands what is happening to her (though maybe ignorance would be better?!?).

At the moment, I am at an "acceptance" level. I'm still not happy about the whole thing, not happy about not being in control, but it's not going away on its own. This site has helped me enormously - I seem to have a need to talk about or read about scoliosis on a daily basis, and here - nobody seems to mind!

H