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Celia
02-24-2006, 11:03 AM
Hey gang,

I know a lot of parents are desperate for information on infantile scoliosis and it may be difficult to find it on the internet. What I've done is I've gathered a few articles that may assist you in your quest. You will need acrobat reader to view these articles and in the event that you don't have it, you can download it for free here:

http://www.adobe.com/support/downloads/main.html#Readers

There is one article which you MUST READ, it was recently published by Dr. Min Mehta "Growth as a Corrective Force in the Early Treatment of Infantile Idiopathic Scoliosis" and it's the 4th article down on the following website, you don't need a password to view it.

http://www.scoliosis-support.org/modules/wfdownloads/viewcat.php?cid=4


Infantile Idiopathic Scoliosis: Can it be prevented ?
M. J. McMaster JBJS (Br)
http://www.jbjs.org.uk/cgi/reprint/65-B/5/612


Natural History and Prognosis of Infantile Idiopathic Scoliosis
Scott and Morgan 1955 JBJS
http://www.jbjs.org.uk/cgi/reprint/37-B/3/400


The Management of Progressive Infantile Idiopathic Scoliosis
M.J. McMaster JBJS
http://www.jbjs.org.uk/cgi/reprint/61-B/1/36


The Management of Infants with Scoliosis
James JBJS
http://www.jbjs.org.uk/cgi/reprint/57-B/4/422


Prognosis in Infant Idiopathic Scoliosis
Thompson and Bently JBJS
http://www.jbjs.org.uk/cgi/reprint/62-B/2/151






celia :)

moosie45
03-04-2006, 11:50 PM
Dear Celia,

Thank you so very much for being so thoughtful and taking the time to post these wonderful, very informative articles!! It's greatly appreciated and very helpful during a time when I feel so helpless. You're awesome!! :)

Greatfully,

Jennifer O'Donovan
mom to Liam - 11 months - progressive, infantile (idiopathic?) scoliosis - 105 degree curve

Celia
03-05-2006, 10:00 AM
Jennifer,

That is such a sweet thing to say :) Thank-you. I hope everything is going well for you and your little man.

cherylplinder
03-05-2006, 11:15 PM
You are awesome. I just read the article on conservative treatment of juvenile scoliosis. I have been wondering why that line of treatment is not used for juvenile, or adolescent for that matter. I know older children would not love wearing casts; on the other hand, it appears that in rapid growth spurts, if the curve were corrected aggresively, the deformity could be restructured. Am I understanding what she is saying in that article?

Celia
03-06-2006, 08:35 AM
Cheryl,

Yes, that's what I got from the article. Our previous ortho, Dr. Hedden also casted older children for short periods of time.

Despite fears of copyright infringement laws (and I know I probably butchered that French Cotrel article to bits) my internet buddy Deshea Harris and I felt that the people to really benefit from these articles are the parents ! So..... if we end up going to jail :eek: you can think of us as martyrs for the greater good :D

gerbo
03-06-2006, 11:40 AM
I have been wondering why that line of treatment is not used for juvenile, or adolescent for that matter.

that would make sense, wouldn't it. Who is going to "trial" that on their child though??

tonibunny
03-06-2006, 12:59 PM
Children up to the age of at least 10 were put into EDF plaster casts regularly at the Royal National Orthopaedic Hospital in Stanmore back in the 1970s and 1980s. I know because I was one of them....in my case, however, the cast could not correct my curves but simply hold them to give me time to grow before fusion surgery. I have no idea if they still cast older children in this way.

My curves were always very inflexible though, and even with halo traction the best correction that could be acheived was that my thoracic curve was reduced down to 45 degrees. Maybe it would be possible to straighten older children if they have more flexible curves, but my understanding is that infants have much softer bones so it is easier to mould them straighter as they grow.

gerbo
03-06-2006, 01:21 PM
Hi Toni

How much of an attempt was made to correct you as much as possible before applying cast and

How often was the cast changed.

Must have been awful to cope with, how did you manage??

tonibunny
03-06-2006, 03:30 PM
Hi,

It wasn't awful to cope with, it was fine, I'd grown up wearing casts and was used to it.

I was cast in exactly the same way as Erin (from SSO) and Dierdre are cast, in traction on a Risser frame. In fact Erin is cast on exactly the same Risser frame as I was, because Stanmore still have the one they've had since the '60s!

Every attempt was made to correct me as much as possible whilst the cast was put on. My surgeon, Mr Edgar, was probably the best scoliosis surgeon in the country at the time (he's now a trustee of SAUK along with Miss Mehta). I had all the elongation, distraction etc stuff done. The curves in my spine were really inflexible right from when I was first diagnosed at 6 months old; this is documented in my notes. My curves were first diagnosed at 62 degrees (thoracic) and about 40 degrees (lumbar) with a great deal of rotation, but the casts and braces held them in the 60s/40s right up until I was ten, when the top one deteriorated to 76 degrees. The most correction I ever got in a cast or brace was about 30%. 3 weeks of halo-tibial traction brought my 76 degree curve down to 45 degrees, where it was fused.

I also wore Milwaukee braces, but these were made using casts moulded whilst on the EDF frame too. I had casts changed every two months and tended to wear the casts in the winter months and the braces in the summer months when plaster of paris would get excessively hot (in the earlier years the jackets were made purely of plaster with no fibreglass, so they were very heavy).

I preferred casts to Milwaukee braces as they didn't have the metal neck ring; however, I loved being able to take the brace off for an hour a day, and have baths. Swings and roundabouts :)

Hope this helps. To everyone who thinks it must be traumatic for a child to wear a cast - IT ISNT!!! I should think that growing up with a severely twisted spine because one's parents/doctors were too pussy to put one into a cast would be a lot more traumatic!!

Regards,
Toni

Celia
03-07-2006, 01:43 PM
It wasn't traumatic AT ALL for Deirdre. She is now 5 years old and the whole experience is becoming a distant memory. The casts were very comfortable, very much like an under-arm boston brace and VERY inconspicuous underneath clothing. Most people didn't even know she was wearing a cast or that she had an orthopaedic problem. I'm really glad we did it, because now her 60 degree curve is down to "1" in the spinecor brace and she looks great !

mariaf
03-07-2006, 03:19 PM
Hi Celia,

I'm just curious how long they will have Deirdre wear the Spinecor brace. You don't say what her curve is out of the brace, but since it is 1 degree in the brace, I am guessing that even out of the brace her curve is quite small -and I was under the impression that curves under 20 degrees or so don't need to be braced, at least not full time. Is it different with the Spinecor? I'm not all that familiar with this type of brace and exactly how it is used, although I have read quite a bit about it on this site and am, hopefully, becoming a bit more educated about it.

In any event, it sounds like she's doing wonderfully, and I hope she continues to do so!!

take care,

gerbo
03-07-2006, 03:20 PM
very interesting toni, there was clearly a degree of dedication from consultants which seems to be lacking (??) these days.

Any reason your spine was so inflexible??

gerbo

Celia
03-07-2006, 04:06 PM
Hi Celia,

I'm just curious how long they will have Deirdre wear the Spinecor brace. You don't say what her curve is out of the brace, but since it is 1 degree in the brace, I am guessing that even out of the brace her curve is quite small -and I was under the impression that curves under 20 degrees or so don't need to be braced, at least not full time. Is it different with the Spinecor? I'm not all that familiar with this type of brace and exactly how it is used, although I have read quite a bit about it on this site and am, hopefully, becoming a bit more educated about it.

In any event, it sounds like she's doing wonderfully, and I hope she continues to do so!!

take care,


Maria,

Thanks for the well wishes ! Oh, and happy belated birthday to you too :D

She'll probably have to wear the Spinecor brace for at LEAST two years so that her body "learns" the corrective movement. I don't feel comfortable with any other kind of scenario. If she has to wear it longer, I'm O.K. with that - it's such a great brace ! There was a lot of uncertainty before the last cast came off as to how her cuve would behave and I'm sure with no support, the curve would continue to progress with growth. Infantile scoliosis is very aggressive and she did start out with a severe curve not too long ago. I'm sure there are doctors who would say "let's do nothing and see what happens to the curve" but I'm not a reckless person especially when it comes to my child's health and well being. I've heard the words "spinal fusion" for my then 19 month old at the very first clinic appointment and these words have haunted me since - it's the kind of fear you never forget.

mariaf
03-07-2006, 04:11 PM
Celia,

I absolutely agree - better safe than sorry. With all the different scenarios these kids could be facing (from fusion to growing rods, etc.), who really cares if they need to wear a brace for a year or two - particularly since she probably forgets she has it on most of the time!! And since it's not restricting her lungs or causing muscle atrophy, all the better :)

Continued good luck to her,

tonibunny
03-07-2006, 08:01 PM
very interesting toni, there was clearly a degree of dedication from consultants which seems to be lacking (??) these days.

Any reason your spine was so inflexible??

gerbo

No idea Gerbo.....it was just one of those things, an idiopathic scoliosis with no other health problems at all.

I am sure that the scoliosis specialists at the RNOH are at least as dedicated as they were years ago....I have no idea what was going on in other hospitals back then. Infantile idiopathic scoliosis is so rare that (hopefully) all cases that are recognised get sent straight to Stanmore; I think we worked it out that only one in 750,000 children will be born with an idiopathic curve measuring over 60 degrees. That's less than one child born per year in the whole of the UK.

Celia
03-07-2006, 09:47 PM
Some curves are just inflexible to begin with - it's just random bad luck.

Toni,
despite such a large, inflexible curve from such a young age, your back looks amazing ;) You really should post one of your pictures.

tonibunny
03-08-2006, 05:00 AM
Thanks Celia, yes I know I have been extremely fortunate to have had such a brilliant surgeon. He treated me for 27 years before he retired. Most of the cosmetic correction was achieved by the thorocoplasty operations as I still have a 45/35 degree curve and they never did manage to derotate my spine because they used a Harrington rod.......this is why I am such an advocate for thorocoplasties! My spine is still extremely twisted round but the rib hump has been flattened as much as possible

I think I was also very lucky to have a double major curve. Despite the initial severity of both curves, they did balance each other out. A smaller, single curve would probably have had more of a cosmetic effect.

I sometimes wonder if my curves held for so long *because* they were always so stiff. Maybe if they were more flexible they'd have deteriorated a lot quicker!

There are photos at the gallery at scoliosis-support.org and also at the Yahoo infantile scoliosis group if anyone would like to see them :-)

Celia
03-08-2006, 08:15 AM
Thanks Celia, yes I know I have been extremely fortunate to have had such a brilliant surgeon. He treated me for 27 years before he retired. Most of the cosmetic correction was achieved by the thorocoplasty operations as I still have a 45/35 degree curve and they never did manage to derotate my spine because they used a Harrington rod.......this is why I am such an advocate for thorocoplasties! My spine is still extremely twisted round but the rib hump has been flattened as much as possible


That's interesting ! I read somewhere that spinal fusion on infantile curves does not correct the deformity in any significant way because the rib hump continues to progress even after the fusion surgery. So even though your surgery was done at ten years of age, you still ended up with a significant rib hump that was corrected through a thorocoplasty.

I've attached a few pictures of Deirdre for those who haven't seen it. I think we were/are so fortunate to have two of the BEST doctors in the world treating her: Dr. Douglas Hedden who is now Chief of Surgery at Stollery Children's Hospital in Edmonton, Alberta and Dr. Charles Rivard in Montreal, Quebec (both Canadians by the way ;) ) I've included the initial x-ray at 19 months of age for comparison purposes.

http://i41.photobucket.com/albums/e251/sealy25/Picture144.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture133.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture129.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture135.jpg
http://i41.photobucket.com/albums/e251/sealy25/Picture077.jpg

tonibunny
03-08-2006, 07:03 PM
That's interesting ! I read somewhere that spinal fusion on infantile curves does not correct the deformity in any significant way because the rib hump continues to progress even after the fusion surgery. So even though your surgery was done at ten years of age, you still ended up with a significant rib hump that was corrected through a thorocoplasty.


I already had a significant rib hump by the time I was ten :( Here's a photo taken six months before my surgery, which I think you've seen before - it's not very clear but you can sort of see:

http://img.photobucket.com/albums/v28/tonibunny/show_slife.jpg

(cool outfit hey!)

It's interesting that you say that infantile rib humps continue to progress after fusion. Mine did but I didn't know this was common in infantile scoliosis. I had one costoplasty at 18 and another one when I was about 26. I had a huge amount of rotation but barely any kyphosis, which meant that I had a very sharp "shark's fin" type of hump.

cherylplinder
03-08-2006, 08:23 PM
Whoa! That 60 degree curve is impressive. Very scary.
Her correction is also impressive! :)
She's beautiful!

Celia
03-08-2006, 10:01 PM
Thanks Cheryl :) The initial x-ray gave me quite a fright the first time I saw it. To look at her, you wouldn't think she had such a significant curve. I remember having my two little ones in a double stroller that day and they couldn't see me because I was behind them pushing the stroller - I was crying all the way home. I was a total mess. If we had a different doctor, I'm sure Deirdre would have had spinal fusion or the VEPTR by now.

cherylplinder
03-09-2006, 12:30 AM
You are such a valuable resource for the parents dealing with infantile, juvenile, and adolescent scoliosis. Thanks for all you share. I have learned so much from you and Gerbo.

I don't understand why casting is not more widely used in infantile scoliosis. It seems that until YOU tell the parents about it, they are completely unaware of the possible benefits. Not only that, but the lack of urgency that seems to prevail among the physicians that are treating these children is alarming.

Go figure.

The lack of concern, interest, and knowledge exhibited by many physicians is staggering to me.

Celia
03-09-2006, 02:56 AM
The lack of concern, interest, and information exhibited by many physicians is staggering to me.


I find most doctors/parents have a very blase attitude towards infantile or even juvenile scoliosis - they confuse it with the adolescent variety. Parents are lulled into a false sense of security by orthos who tell them that their child probably has the "resloving" type of infantile scoliosis without doing the necessary tests to determine this !!!! Parents are told that 90 % of infantile curves resolve - are these percentages accurate :confused: Has anyone done a conclusive study to determine this ? I think not ! Parents are told to "watch and wait" and to return for a followup clinic appointment in 4 or sometimes even 6 months !!!! An infantile curve can potentially progress 30 to 50 degrees within that time frame. Progressive infantile scoliosis is a ticking time bomb, it can lead to severe, crippling deformity where the only recourse is surgery. I've heard people say that scoliosis is not an "emergency situation" well... IT IS for infantile curves. Furthermore, many parents believe that surgery is a "cure all" nothing could be further from the truth ! Even after surgery, these children will STILL have very significant deformities and cardio pulmonary problems which will last a life time. The best treatment is to treat it early and treat it aggressively ! Can you tell this is a topic that makes my blood boil :rolleyes:


Toni, that dress is too cool ! Deirdre wore a lot of tent dresses too :D She now wears a lot of groovy girl clothes.

gerbo
03-09-2006, 05:28 AM
I have learned so much from you and Gerbo.

that makes me a bit nervous, I am just making it up as I go along. Results wise, I have nothing to show for at all (yet), unlike Celia who has got "living evidence" of the benefits of the approach advocated by her.

cherylplinder
03-09-2006, 11:36 AM
that makes me a bit nervous, I am just making it up as I go along. Results wise, I have nothing to show for at all (yet), unlike Celia who has got "living evidence" of the benefits of the approach advocated by her.

No worries! :cool:

I am confident from what I've read, that this is at least worth a shot, and am currently pursuing my other options if I get bad news in April. The level of integrity and concern I found in Dr. Rivard also gave me comfort and confidence. I think he is a rare breed.:)

But I really appreciate the time and effort you both put into posting research articles. There is no question that it is of tremendous benefit.

I know that you are guarded in your recomendations at present. I feel the same. But is of immeasurable benefit to the other parents dealing with these issues to at least have the benefit of knowing their options.

I think you are both treasures! :) Thanks!

gerbo
03-09-2006, 01:24 PM
cheers :cool: :cool:

Celia
03-09-2006, 06:42 PM
Cheryl,

You know, I've been called a lot of things.....but definitely NOT a treasure :D
Although.... I must admit Gerbo is a real gem :) :)