PDA

View Full Version : Infantile Scoliosis / Juvenile Scoliosis


tonibunny
2nd August 2004, 10:21 PM
Hi,

I thought I'd put a shout out to any parents out there who have babies and young children with scoliosis.

There are quite a few of us here who have firsthand experience of this - both parents of children currently undergoing scoliosis treatment, and people who were first diagnosed as babies or young children - and we're here to support you and answer any questions you have.

I myself was diagnosed at the age of 6 months, with a double curve of about 60/40 degrees. I spent my childhood wearing plaster bodycasts and Milwaukee braces, and had my first surgeries at the age of ten, which included a spell in Halo traction. I had further surgeries at 18 and 26, and I am nearly 29 now. I remember all of my treatment vividly and am here to reassure any worried parents that bracing, casting etc isn't as horrible as they might think! Young children are very adaptable, and I believe that it is a lot tougher on the teenagers who get diagnosed with adolescent scoliosis.

So, if you are a parent of a young child with scoliosis, please do post to say hello! :D

Toni xxx

sins
2nd August 2004, 10:31 PM
Just to echo Toni's words of support to anyone out there who would like to chat about infantile scoliosis.Many of us have come through it and now have our own children so can see it from both sides of the fence.
Toni has a lot of experience in dealing with parents of infantile scoliosis and will be delighted to help you find as much information as you need.
sins

jfkimberly
3rd August 2004, 12:36 AM
Yeah, me too... I was born with congenital scoliosis which progressed rapidly and led to surgeries at 11 months and 18 months. My mother told me about how I learned to walk while wearing a 30-pound plaster body cast and after two early spinal operations. I don't remember the surgery, because I was so young. What I do remember is the regular checkups as I was growing up.

Oh, and I remember a funny incident when I was about 3, maybe 4. One of my doctors was publishing a book on pediatric orthopedic surgery, and he wanted me to be one of the case studies, so he asked my mother and me if it would be okay if he took a picture of me. Having had so many xrays, I thought "picture" was Adult Speak for yet another xray, and I couldn't figure out why I got to have a say on whether we did this one or not. But I said yes, because my mother said it was okay if I agreed to it, and I knew that's what everybody wanted me to say. Next thing I know, I'm standing against a wall and he's got a 35mm camera out. I was so surprised that we didn't go down to the radiology department!

tonibunny
3rd August 2004, 12:51 AM
I have just sent a message to the Infantile Scoliosis Yahoo Group, who are a wonderful group of parents of children who are undergoing serial corrective bodycasts as a method of treating infantile scoliosis. Hopefully we'll see some of them here! :D

We should be setting up a dedicated Infantile/Juvenile Scoliosis forum here very soon, and of course that will include Congenital Scoliosis too. There are so many frightened parents out there who need our support and advice! Your shared experiences are going to be very valuable there Kimberly :-)

jfkimberly
3rd August 2004, 01:25 AM
I'd be happy to share my experiences. I grew up in the dark ages, and the kids today have much better options. But even so, I'm happy with the treatment I had growing up. I live a full and happy life now, and I am glad I can offer reassurance to anybody going through it today.

tonibunny
3rd August 2004, 01:56 AM
I've found from my dealing with parents of scoliotic children that there is a terrible attitude prevalent amongst doctors in the US, that putting a very young child into a plaster cast is somehow "barbaric" - and that it is often seen as preferable to adopt a "wait and see" approach to infantile scoliosis! This really shocked me because in most cases, infantile scoliosis progresses rapidly if unchecked. There are hundreds of kids out there whose curves have progressed needlessly due to this ignorant attitude.

I would very much like to help dispel this myth, and I'm sure Kimberly can back me up in reassuring parents that children adapt amazingly well to wearing bodycasts.

mark
3rd August 2004, 02:23 AM
Thats a brilliant idea for a new forum Toni

andrea
3rd August 2004, 12:34 PM
I'd be more than happy to help here where I can. Although we're still at the start of treatment, i can certainly reassure parents that bodycasting isn't barbaric or cruel and the children get used to it with amazing speed. I'd also love to speak to other parents going through the same things as we are - while you lot are fantastic, there's nothing like sharing your thoughts with people on the same journey at the same time.

sins
3rd August 2004, 02:19 PM
I agree 100% Andrea, which is why we're looking at expanding the site to more fully meet the needs of parents like you.We've noticed a lot of parents on various boards with the same problems as Erin and receiving no replies.If we can gather a group of people here and facilitate exchange of information and experiences it will be so much better.I'm sure I sent Jonathan the links for the infantile scoliosis group a few weeks back, but the way my brain is working at the moment, perhaps it was to another parent!!
Just pm Toni and she'll try and put you in touch with her group of parents.
This site is still developing very rapidly and we're trying to find ways to make it work best to suit different groups so if you have any suggestions/comments, please feel free to say!
Sins.

nojobro
3rd August 2004, 03:46 PM
Hi, Toni, thanks for posting this link on the infantile group at yahoo groups.

My daughter is five and has been wearing a TLSO since she was 2. She does very well in it. She has a lumbar curve that is currently measuring 25; it was 20 when she was diagnosed at 18 months and it measured 35 when she went into the brace. She wears it full time. We've had an MRI and no reason has been found for her scoliosis. We've also had some genetic testing done due to her other issues in conjunction with the scoliosis (see below), but she hasn't been found to have any known syndrome.

Her doctor has discussed with us the possibility of a new surgery called vertebral body stapling. Special staples are put along the convex part of the curve and this pulls the curve straight. The surgery does not need to be redone, and while results so far have been good, it is possible to do a traditional fusion surgery if needed. It's designed for young scoliosis patients who have progressive curves measuring up to around 50. Currently, it's only being done by Dr. Betz at the Shriners in Philadelphia, and by Dr. Lubicky at Shriners Chicago (though he will be at Rush starting in September). Just thought I would write a bit about it in case someone is trying to find information out about it. We're going to see Dr. L again next year and will discuss the surgery again at that time.

My daughter has also had some other medical issues. She was born 10 weeks prematurely because of a malfunctioning placenta/cord, and she had hip dysplasia, which ended up being a very difficult case requiring a harness, braces, 4 minor surgeries and 1 major surgery, and 19 weeks of body casts. However, her hip is marvelous now; it was difficult to get through but the result is worth it. She also has mildly low muscle tone and hypermobile joints.

Nola

andrea
3rd August 2004, 04:21 PM
Can someone tell me what a TLSO is please? We haven't come across this before.

Thanks

tonibunny
3rd August 2004, 04:40 PM
A TLSO is a Thoraco-Lumbar Sacral Orthosis - the technical term for any "corset style" brace.

Welcome Nojobro! You're Nola from the Infantile Scoliosis Yahoo Group, am I right? :D I just posted you a long reply to your post there. It's great to see you here :welcome:

Pikey
3rd August 2004, 05:52 PM
That new Op sounds really good , the body stapling thingy .Has anyone got any links to web sites where we can learn more .
I had my first body plaster in 1969 when i was 7 , i guess that puts me in the Stoneage Op category . I hope all goes well for your daughter , take care ,Pikey.

tonibunny
3rd August 2004, 05:59 PM
I'm going to be pulling together info on all sorts of techniques for treating infantile scoliosis, so we build up a good resource here at SSO. There don't seem to be many places where parents can get support specifically for Infantile Scoliosis - the Yahoo Group is fabulous but is focussed on Serial Plaster Casting, and there are many parents out there who won't get the opportunity to have this treatment for their children. We can provide a more 'general' support group here :D

nutmeg
4th August 2004, 01:50 AM
Here are a couple of links for vertebral stapling

http://www.shrinershq.org/whatsnewarch/arc...erview5-03.html (http://www.shrinershq.org/whatsnewarch/archives03/betzinterview5-03.html)
http://www.spineuniverse.com/displayarticl...rticle1895.html (http://www.spineuniverse.com/displayarticle.php/article1895.html)

tonibunny
4th August 2004, 10:09 AM
Brilliant, thanks Nutmeg. I'm going to try to write up basic articles on Vertebral Stapling, Serial Corrective Plaster Casts etc and add links to more information at the bottom of each one, so that parents can come here and easily compare techniques and options for the treatment of their infants.

I totally advocate the use of Serial Corrective Casts and would like to help spread the word about this treatment as it is not widely known about, but there are many cases where this treatment isn't yet available or it is unsuitable for the child, and I'd like us to provide support for all parents :-)

newgirl
5th August 2004, 01:27 PM
Hi,
I have a 10 month old daughter who has been diagnosed with a 37 degree thoracic curve. We are waiting for an MRI to rule out any cord problems, and a decision will then be taken as to whether to cast her.
I am presuming that with this degree of a curvature that she should be casted, do any of you have any experience?
Also approx for how long are infants left in casts, years?
Any info would be appreciated.
N

tonibunny
5th August 2004, 02:10 PM
Welcome Newgirl! :welcome:

I'm just rushing off on my way to a hospital appointment right now, but I'll post you a load of information as soon as I get back. There are fantastic new treatments out there for babies your daughter's age - and it's been proven possible to actually CORRECT a curve by using serial plaster casts, instead of just holding the curve to buy the child time to grow before fusion surgery, which had been the usual way of dealing with infantile scoliosis. I'll get back to you asap! :D

newgirl
5th August 2004, 02:18 PM
Thank you so much,
it is proving so difficult to get info on infant scoliosis
N

titch
5th August 2004, 05:09 PM
Hi Newgirl :-)

We've just started a new forum for infantile, juvenile and congenital scoliosis, where we hope to get some really good discussions going, and plenty of support and info. I'm sure between Toni and the others, you'll get plenty of help. :welcome2:

andrea
6th August 2004, 09:51 AM
hi Newgirl

I'm Andrea and my daughter Erin was diagnosed with a 62 degree thoracic curve at the age of 18 months. She is currently in her first plaster cast and doing really well. She had an MRI too, but she had one just before she had her cast put on. They put her under a general aneasthetic and then she had her MRI and cast together. Toni will no doubt give you loads of information - I don't feel I've got to grips with it all myself yet. We found a video by Dr Mehta really helpful - she was instrumental in the development of plaster casts and using the child's growth to straighten the back (I think). It's called Infantile Scoliosis - a new direction and is available from ARISE on the RNOH website.

Where are you based?

Keep in touch with us and we'll help you get all the information you need. I've just taken some more pics of Erin in her cast so will post them on to the galleries shortly.

Take care
Andrea

newgirl
6th August 2004, 12:45 PM
Hi Andrea,
Thanks for your reply. Erin looks like a really cute little girl!
We are based in Dublin and so we are a little bit unsure whether the treatments here are the same as the U.K although I am assuming they are very similar. We are having our MRI in a couple of weeks time under sedation, as they really do need to rule out any real cause for the curve before they will consider putting her in a cast. She has a number of haemangiomas and one possibility is that she has developed one of these on her spine. She also has a Y shaped natal cleft (top of her bum) which was checked by ultra sound when she was 8 weeks old to rule out spina bifida occlusion, but can also be an indication on a tethered cord.
We are just waiting to see what the MRI shows up and then to see the ortho in Septmber when hopefully a decision will be made about the cast.

How often does Erin's cast have to be changed? Also, how do you manage bathing her with the cast? Our little one loves her bath and it is part of her going to bed routine, so I am not too sure how she will take to not having one :cry:
N

sins
6th August 2004, 01:58 PM
Hiya N,
I'm based in Cork myself and Pauline and Michele are based in Dublin and limerick respectively.We've just received charitable status for a support group known as The Scoliosis Support association of Ireland.
The group will be operating in association with this website here so you've come to the right place.
I presume that your daughter is going to Crumlin.If we can be of any help just ask and we'd love to hear of your experiences to date.Are you seeing Mcmanus or McCormack?

andrea
6th August 2004, 03:35 PM
Hi N

We're working on the basis of a cast change every 3 months, but this will depend on how quickly she grows. We have regular check ups in between to have xrays and stuff - next one is next week. Eek. Erin also really loved her baths and it was horrible to take them away from her, but we removed all her toys from the bathroom so she didn't have any reminders and told her that she has different baths. Everyone does it differently, but I fill the kitchen sink up and she sits on the edge of that while I wash her. She still plays with the bubbles and blows them all over the kitchen, and manages to soak everything.

If the MRI comes back clear (fingers crossed) and they decide to put her in a cast, try and get it done as soon as possible as it's amazing how quickly a curve can progress at this age. Erin's got bad very very quickly and by the time I decided I wasn't a neurotic mother and something was wrong, she was already considered an "urgent" case.

Best of luck
Andrea

newgirl
6th August 2004, 03:51 PM
Hi
Sinead we are actually going to Mc Manus in Temple Street, have only met the "big man" once yet but should see him again for the results of the MRI in Sept.
I would be really interested in the support group keep me posted here.

Andrea, I know exactly what you mean about the neurotic mother bit, I felt I must be imagining it as she had seen so many different specialists for all her other problems and nobody picked it up.
Eventually I did get her referred to the ortho, but her 1st appointment was not for nearly 3 months. After 2 months I got in a panic and was convinced that it was getting much worse, so rang hospital and luckily got speaking to the right person who put us in for an urgent appointment the following week. Hopefully, it will not progress too much in the meantime, but I will push for a cast asap all being well with the MRI.
Thank you all for taking the time to reply, I have been finding it so difficult to find info and it is so nice to know that other people are out there with the same problems.
Have a good weekend
N

andrea
6th August 2004, 04:06 PM
N

Our stories seem very similar. Erin was seeing a consultant for a kidney reflux that was diagnosed at about 10 months, and I was convinced that if there was anything else wrong with her, he would have mentioned it or shown concern, but he didn't. I will always kick myself for not taking her to the doctor sooner, and for not trusting my instincts, but I'd never heard of scoliosis - didn't know it existed! We were referred by our GP to one hospital, but this time I trusted my instincts, which said they weren't taking it seriously enough and sought the opinion of a private consutant, who had done some work at the RNOH in Stanmore. One week later we had an appt and then were in for her cast a week later. Incidentally, the appt for the other hospital came through for 3 months later. When I spoke to the secretary, she said that the consultant had marked her case "routine". I shall say no more.

Keep in touch
Andrea