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Thread: new at this: 5 year-old son w/ scoliosis

  1. #1
    Join Date
    Jul 2005
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    NY State on border of northeastern PA
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    new at this: 5 year-old son w/ scoliosis

    Hi everyone! This is my very first time posting anything on a forum, so please excuse any mistakes I might make. Anyway, I live in NY State (right on the border of Pennsylvania and New York) and we just found out last Friday that my 5 year-old son, Alex, has scoliosis. It was discovered at his pre-Kindergarten physical by his Pediatrician, who then ordered x-rays. I don't have a lot of details other that the fact that he has a 30 degree "S" curve. We've been referred to a very reputable Pediatric Orthopedic Surgeon in Syracuse, NY (about 2 1/2--3 hrs from our home) and will be seeing him August 22nd, but the waiting for a month seems unbearable while I ponder what may or may not happen in the future.

    I've been spending my lunch break at work daily ever since the diagnosis researching the disorder as much as possible since I've never even known anybody who has had it! I've been trying to find information about young boys with scoliosis, but it seems mostly teenage girls who have it (or at least who offer info. out there in the cyber-world).

    I'm still pretty freaked about all this and my husband is worried about the psychological impact wearing a brace for many years will have on Alex. If anyone else has gone through a similar experience with their child, how did you handle it all? I still tear up every time I start thinking about this...

    Well, I'm writing this on my afternoon break at the office and need to get back to work. Thanks in advance for any help/information you all may pass along!

  2. #2
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    Sep 2003
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    Hi Kim...

    I'm so sorry to hear about Alex. I'm sort of teary just thinking about all you're going through.

    I'm sure that Carmell will post an informative response soon. She's really the non-medical expert on scoliosis in very young children. I do want to encourage you to be sure that Alex is seen by a scoliosis specialist instead of just a general orthopaedic surgery. You can find a list of specialists here:

    http://www.srs.org/directory/

    Best of luck.

    Regards,
    Linda

  3. #3
    Join Date
    Oct 2003
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    Utah
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    Hi Kim,

    Welcome. You probably have realized that scoliosis in young children is quite rare/unique. I agree with Linda (our resident non-medical expert in adult scoliosis) that Alex needs to be seen by a PEDIATRIC orthopedic surgeon who has extensive experience in dealing with kids who have similar conditions as Alex. This is very important. The names of specialists in your part of the country that come up over and over (having good comments from parents) include Dr. Randal Betz and his colleague Dr. D'Andrea at Shriners in Philly, Dr. John Emans in Boston, Dr. Lee Segal in Hersey, etc. These docs see patients similar to Alex everyday. You also want someone who will involve you and your husband in the decision making process. You'll find that the more opinions you get, the more choices you have to make - scoliosis is not a one-size-fits-all condition.

    My first suggestion is to take this all one step at a time. Don't get so overwhelmed with information that you have facts that are blown out of proportion. Scoliosis is rarely an emergency situation. You have time to research and find the right doctor, with the right game plan, at the right time to treat Alex.

    Write down a list of questions that are specific to Alex to take with you. Put them in priority order since many times the doc doesn't make time to answer ALL the questions. You'll want to know if Alex's scoliosis is idiopathic or congenital - is the bone structure of the spine correctly formed? or are there bone malformations that are contributing/causing the curvature? What is the long term plan? Scoliosis is not a condition that is usually treated quickly, then you forget about it. Be patient.

    Again, scoliosis in young children is not common. If he does have one or more bones of the spine that are not fully formed (or malformed) you'll want to make sure his kidneys are fine. During fetal growth, the kidneys and spine form around the same time. Also, eventually you'll need to have a full-spine MRI done to make sure the spinal cord is not compromised.

    You mentioned bracing - not all children do well with bracing. If Alex has congenital scoliosis, bracing won't be much use to stabilize the spine. In kids with idiopathic scoliosis, most statistics show a 50/50 chance of bracing being of any benefit. You may find this is not an option for Alex.

    Please continue to ask questions, if you need to. I'd be happy to share our specific experience with scoliosis with you. Feel free to email me at boulderfam@hotmail.com I know several parents in your area that would be happy to share their experiences as well. You are not alone.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  4. #4
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    Thanks, Linda, for the extra info. re: the doctor. I insisted on being referred to Dr. Stephen Albanese in Syracuse, NY after researching all weekend and finding his name on every major site I could find. (BTW, he is also listed on the link you sent to me--thanks!)

    And, Carmell, all I can say is WOW! You have some great suggestions. Mike (my husband) and I already talked about getting a notebook (I'm going to buy one TOMORROW) and writing down all our questions so that when we get all the way to Syracuse we won't forget to ask ALL our questions. You have so many great suggestions and I really appreciate your taking the time to answer my post.

    One more question for all of you out there...Has anyone heard of chiropractic care being successful in treating juvenile scoliosis? A friend at work gave me a pamphlet from her chiropractor's office saying that it can work, but I'm skeptical...Not to mention the fact that insurance companies don't recognize chiropractic care as a medical necessity.

  5. #5
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    Northern California
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    Kim...

    I've heard from dozens of chiropractors who claim that they can stop or reduce curves, but I've never once seen even a shread of evidence. Here's the one published study on the subject:

    http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

    Regards,
    Linda

  6. #6
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    initial visit w/ Pediatric Orthopedic Surgeon

    Hi Everyone! Just wanted to update you all on the results of our first trip to see the Pediatric Ortho doc yesterday in Syracuse, NY.

    Dr. Albanese was very nice to Alex and very straightforward with my husband, Mike, and I about the progression of Alex's curve at the young age of five-years-old. He ordered a triple study MRI (cervical, thoracic, and lumbar spine), which we couldn't schedule for another month at our local hospital where our insurance will cover it. He wants to rule out any congenital malformations or problems with the spinal chord itself, but doesn't suspect it will show any. If the MRI gives us no indication of any of these sort of problems, then he recommends a brace worn 22 hours a day.

    Mike and I are both worried about the psychological impact of wearing an uncomfortable brace all day every day, but Dr. Albanese stressed that in order to hopefully avoid future spinal surgery, this is a necessary option for Alex's treatment.

    So, we wait for the MRI results in another month and then we will cross the next bridge in this journey with scolioisis.

  7. #7
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    Hi Kim,

    Thanks for the update. Glad to hear Alex is going to have the necessary tests he needs to rule out any underlying cause for his scoliosis. Good luck with the tests and let us know what they say. Good luck with the bracing. Some kids adapt very well to a brace and actually end up depending on the brace for support and confidence. There are lots of suggestions to help him deal with having a brace - like having him name the brace, pretend with the brace, put stickers on the brace, etc. If the brace is his "friend" it will be a positive experience. My daughter hated the brace from day one, but then again, she was 13. Not a positive age at all (for her)! LOL

    Keep us posted!
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  8. #8
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    Perth, Western Australia, Australia
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    If he does need a brace, you'll probably find tears to start with, but with lots of support and encouragement he'll get used to it and it'll soon become a part of his day....put on clothes, put on brace. And he'll probably have the lovely knack you have when you're a kid of being able to bounce back and being resilent to any 'obstacles' in their path.

    The brace is uncomfortable to start with.....mum said I cried the first 24 hours and so did she. But you soon get used to it, and the ways of moving in it, and you begin to 'miss it' when it's off.

    As my Mum put it one day 'we gave her lots of support and encourgament, but not sypmathy'. The brace was simply a part of her.....it didn't make her any different from any other kid'

    If Alex does need a brace, I'd encourage you to take it into his Kindergarten class when he first gets it for 'show and tell'. At that age, kids are curious, and they can then ask the questions they have about the brace and ....what is scoliosis. My Mum teaches kindy and she says that kids are very accepting at that age of kids who are 'different' in some way.......often they don't even notice

    Good luck with the tests and Good luck with the bracing

    Alison
    Last edited by Alison; 08-23-2005 at 10:25 PM.

  9. #9
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    May 2005
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    I was told before our 11 year old got her brace that it is usually the parents who struggle more then the child, and indeed 8 months into it, our daughter is usually very comfortable with her brace and can even joke about it (she loves her story where there was a percussiuon workshop at school, which included using your body as a percussion instrument, clearly she was able to produce very surprising percussion sounds, beating her chest. And what about walking into a wall without hurting yourself....??)

    Saying that, whe still have moments that we all can get very tearful about it all, and the lingering doubt remains; is it all worth it??

    Still, with your support (as said by others) he will adjust and he will still enjoy life as before.

    gerbo

  10. #10
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    thanks for the support

    Just wanted to say thanks to all of you for the support you all provide--this is an excellent network for parents and scoli patients. I even told Alex how Mommy has talked to people all over the world about his "crooked spine" and that many people have this scoliosis. (Yes--he can say it now!)

    That's a great idea about taking the brace to Kindergarten and explaining to his classmates. He starts Kindegarten in 2 weeks. I don't want to point out that he's different if that makes him uncomfortable though.

    And thanks for making me laugh with the percussion story. I'm sure Alex would think that was cool as he is a HUGE rock-n-roll drummer fan boy

    Anyway, thanks everyone, for all the support and I'll keep you all posted.
    Our next challenge will be with the insurance covering any of the brace--we have only one in-network DME provider and they do not deal with customized bracing of any sort. Grrr.......I am a medical billing clerk and used to work for this DME company for 7 years (switched jobs 11 months ago), but still they can't help me. I'm going to try and appeal with my insurance company--wish me luck!

  11. #11
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    Kim, you might want to consider Shriners for the brace. I met people at Shriners when we were in for Erica's spine surgery who were there getting their braces. You can find them on the internet. Kris

  12. #12
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    "That's a great idea about taking the brace to Kindergarten and explaining to his classmates. He starts Kindegarten in 2 weeks. I don't want to point out that he's different if that makes him uncomfortable though"

    I'd initially see what Alex wants to do.....if he wants to show it for show and tell, encourage him to do so.....go with him on the day, you could help him with the explaining if needed.

    If he's uncomfortable I'd see how he goes wearing it....ie if anyone notices (in kindy you often don't notice 'different kids) and if kids ask him lots of questions/are curious etc I'd encourage him to show it for show and tell so all questions and curiosities can be satisfyied :-P

    It gave me a giggle the percussion instrument story.....one noise Mum can't take away (ie you can take away a noisy toy but you can't take away the brace) lol

    Good luck

    Alison

  13. #13
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    Jul 2005
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    Question question about Shriners

    Would Alex have to be followed by a Shriners doctor to get his brace through them? Just don't want to have to go through another long trip, evaluation, etc. if not necessary. Plus Mike, Alex, and I are just getting comfortable w/ Dr. Albanese and would rather not switch to a doctor even further away from home--2+ hours to Syracuse, NY is long enough w/ a 5-year-old in the car. I think the closest Shriners is in Erie, PA and that's about 3 1/2--4 hours from our home.

  14. #14
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    Kim, You have a very good point about distance and time. Find out what your insurance will pay for the brace and how much it costs. We had $500 deductible or something like that for a $2500 brace. Insurance paid some, but we were stuck with over $1,000. Shriners is free, but I have to admit, people I met were coming quite a distance and apparently needing to stay there a few days to have Shriners adjust the brace as needed before they went home. Not sure how long they actually had to stay. I remember taking a whole day to travel to Charlotte, NC, the closest place to be measured for the brace, then going back several weeks later to get the brace, then going between the doctor in Charlotte and the brace company in Charlotte, to get x-rays with/without the brace, get the brace company to adjust the fit, etc. I would spend a whole day traveling to Charlotte, sitting in various offices, then returning home. We live about 40 minutes from Charlotte, but with the "big city traffic" and confusion, it ended up being a day out of school for my daughter every time we went there. I found out there was a place near here to do minor adjustments, but I had to go to Charlotte for the initial fitting and to get the doctor to decide if we needed it adjusted tighter to force the curve more, etc. Kris

  15. #15
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    Aug 2005
    Location
    S. Jersey
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    Also have 5 year-old son w/scoliosis

    Quote Originally Posted by Kim T
    I even told Alex how Mommy has talked to people all over the world about his "crooked spine" and that many people have this scoliosis. (Yes--he can say it now!)

    That's a great idea about taking the brace to Kindergarten and explaining to his classmates. He starts Kindegarten in 2 weeks. I don't want to point out that he's different if that makes him uncomfortable though.
    Kim, welcome! I'm new here myself, although my five year old son has had congenital scoliosis for several years. He has a forty degree C curve, but it is stable, and is mainly to balance out a tilted pelvis and from a hemivertebrae.

    He doesn't wear a scoli brace, but he does wear a brace on his leg, from the foot up to just below the knee. At that age they are very adaptable, and it becomes just another part of them. He is still young enough that he really doesn't notice the differences between himself and others, and is very matter of fact about the ones he knows of. I think your son will do fine!

    Good luck with the insurance. We are lucky that ours takes many places, and the hospital itself has an orthotics clinic right down the hall from ortho clinic, so it's one-stop-shopping for us. We do have to come back for brace re-fitting and pickup though, even if the the initial molding/fitting is done same day as ortho.
    Connie - Mom to Billy 5
    (CRS/VACTERLS incl. tethered cord, IA, single kidney, hemisacrum, levoscoliosis with hemivertebrae (fusion T11 to S2/hips 8/06), extra left rib, hypospadius, hypoplastic left leg w/clubfoot and 4.5cm length discrepancy,GI issues) conni60640@aol.com, http://members.tripod.com/conni60640-ivil/
    TC support group http://health.groups.yahoo.com/group/LMC-TCS/
    Congenital scoliosis support group - http://health.groups.yahoo.com/group...liosisSupport/

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