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Thread: 5 year old with scoliosis

  1. #1
    Join Date
    Apr 2009
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    5 year old with scoliosis

    Hey all. Took my 5 year old son, Layne, in for vacinations and a well child check up last week. The doctor was a general practitioner in a clinic, not a pediatrician. Anyways, part way through the physical exam he announces that, "He has scoliosis." has my son bend over in front of me and says, "See."

    At the time I did not know what I was looking for and honestly was pretty much thrown for a loop and the only thing I could come up with was, "What do we do?" The doctor says to just have it checked once a year. About 30 seconds later he was out of the room

    Now that I've had time to process it a bit, and start thinking again, I am full of questions and concerns.

    How bad is it? Because he's so young...does that make it more serious? Is a year an ok time to wait between assessments of it...he's growing so quick right now. What is causing it? What can we do on a day to day basis to help?

    I definitely want him to be seen by somebody else, but am not even sure where I'm suppossed to take him? Do we go to a pediatrician, a chiropractor, or do I skip straight to the orthopedic specialists at the U of U? Or...do we see all three?

    I've called our old pediatrician (she was Layne's doc when he was a baby but we haven't been there in a couple years as my husband switched jobs and we now have a "company clinic"). I have a very good opinion of her and would trust her judgement much more. We have an appointment the 28th of April. Her nurse told me I would need to bring in a "Copy of the diagnosis and the x-rays they took." She was a bit taken aback when I told her they did not do x-rays. From what I've read, I'm starting to wonder why the doc didn't order them?

    The other night, after his bath, I had Layne stand in front of me facing away, with his feet together and arms down. I was shocked to see that his right shoulder is about 3/4 to and inch higher than his left and has a different kind of slope to it. Also his shoulder blades...the point that sticks out in the back(feeling stupid, as an EMT I should know that word ...his right is higher than his left. And the curve of his waist is not equal from side to side. Are these the things the doctor was looking at? Looking at the line of his spine...I honestly can't say that I see a curve. This is where the x-rays come in, right?

    I run best on information, and right now all I have is word...and that is driving me a bit nuts. I'm hoping that the first doc was whacked and that I'm seeing things and that the pediatrician is going to take an x-ray and say nothing is wrong...and I can have someone else (or three) review the same x-ray and tell me the same thing. But I also know it might go the other way.

    I was so glad to find a forum like this because there are so many questions that I wasn't finding any one to answer. I'll keep reading up in the forums...I'm sure much of what I've written has already been addressed...but just had the need to get it out there.

    Thanks,

    Sara

  2. #2
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Hi Sara,

    You should definitely have your son x-rayed for starters.

    Then, IF he does in fact have a curve, you should see a pediatric orthopedic surgeon (someone, preferably, who sees a lot of younger kids - not just the typical teenage scoliosis patient).

    I don't know where you live - but Shriners hospitals are great places (we see Dr. Betz at Shriners in Philadelphia - and I don't know many doctors who have seen as many cases of infantile and juvenile scoliosis as he has).

    That said, depending on what area of the country you live in, there are plenty of excellent doctors - and I"m sure you can get some referrals on this forum.

    I would NOT suggest seeing a chiropractor!

    Best of luck to you and please keep us posted.

    P.S. My son, too, was diagnosed very young. Feel free to e-mail me as well if you like.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  3. #3
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,063

    My 5 year old son got the same diagnosis

    SaraG

    We are in the same boat. 6 months ago at my son's 5 year checkup the doctor noticed a rib hump. He had an X-ray and they found S-Scoliosis of 7/12/8 degrees. That's very mild but generally speaking early cases can progress the worst.

    On the plus side your son's spine grows the fastest between the ages of 0 and 5 years old. Between the ages of 5 and 10 if a curve progresses at all it generally does so slowly or moderately.

    I've done a TON of reading and although the link is not definitive there does appear to be some connection between Melatonin and Scoliosis.

    Recent study on Melatonin and Scoliosis

    That thread might be helpful. If it doesn't help with Scoliosis it will at the very least help your son sleep better and be healthier.
    Last edited by Dingo; 04-04-2009 at 12:55 AM.

  4. #4
    Join Date
    Apr 2009
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    2
    Thanks for the replies

    X-rays are definitely the next step and I'm trying not to let myself get too ahead of that. Still, I'm reading up and educating myself as much as possible (without scaring the crud out of myself).

    Mariah,

    We are in Northeastern Nevada near Elko. While there are doctors here, and the pediatrician we are going to see on the 28th is here, we would go to Salt Lake City for anything more than that. There seem to be 3 major choices in SLC; either the University of Utah Medical Center, Primary Children's Hospital or the Shriners Hospital. From what I know, all three are excellent. In that we are lucky.
    I would love to hear from anyone with advice or recommendations regarding any of these in case that is our next step. While researching those places, and the specific doctors today, I realized what a decision that is. Other than word of mouth, how do you pick a doctor?


    Bingo,

    Interesting reading on the melatonin...and by association the calmodulin. Never heard of that one before.
    My husband is a shift worker switching from days to nights every week and uses melatonin, and I use it too once in a while. I'll have to read up on it just to feel safe giving it to Layne on a regular basis(ped dosage, long term use), but it's definitely worth looking into.



    Thanks again,

    Sara

  5. #5
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Hi Sarah,

    I'm glad to see you have several excellent facilities to choose from. The only one I am familiar with (not from personal experience but from talking to others) is the Shriners Hospital in Salt Lake City. I have heard nothing but raves and wonderful things about it. (Carmell, who also frequents this forum - and is from that general area - has personal experience with the doctors there I think. Hopefully, she will post as well).

    In any event, better to be in a place where you have too many good doctors to choose from than not enough!

    Again, good luck to you!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  6. #6
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,443
    Hi SaraG

    I believe my surgeon Dr Brett Menmuir travels to Elko. I know he goes to Winnemucca once a week. You could try calling Reno Orthopedic for the dates. This way you wouldnt have to travel to SLC.

    You would have to check your ins policy. Sometimes they only cover 50% when you leave the state.
    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #7
    Join Date
    Mar 2009
    Location
    Arizona
    Posts
    1,063

    Melatonin and Scoliosis

    SaraG

    I'll have to read up on it just to feel safe giving it to Layne on a regular basis(ped dosage, long term use), but it's definitely worth looking into.

    Until they know for certain that Melatonin works I would not give it to a young child for an extended period. It might lead to diminished production of natural Melatonin... perhaps forever. But it's easy to increase natural Melatonin production which may prove beneficial for Scoliosis and loads of other things.

    Good luck!

  8. #8
    Join Date
    Aug 2007
    Posts
    388
    Have you been to the website srs.org yet? It is the website for the scoliosis research society and they have a list of doctors who are members. I would recommend seeing a doctor on that list because in order to join, a certain percentage of their practice has to be related to scoliosis. They are more likely to be up to date on research etc. You'll want to pick a pediatric orthopedist - especially if they list Juvenile scoliosis as one of their specialties.

    When my daughter was diagnosed, they didn't take xrays either...but they did immediately refer her to an orthopedist who had the xrays taken right there on site. They were able to measure the curve so we had a baseline. Hopefully your son's curves will be as minor as Dingo's son, or maybe even less, but you need to know instead of waiting a year.

    Juvenile Idiopathic Scoliosis is a harder animal to deal with since there are so many more years of growth involved so you are smart to be doing your research.

    Good luck!
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  9. #9
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Sara,

    Welcome. First, take a deep breath. You have time to do research and figure things out - one step at a time - before you panic. There are several variables that play into this. First, you need an xray (preferably from a place where they know how to do scoliosis xrays in pediatrics, not just a typical back xray - different scenario). Then, that xray needs to be evaluated by a pediatric orthopedic surgeon who specializes in scoliosis. MOST times, these steps take place at the same time, once you've made an appt with a ped. ortho.

    I live in northern Utah and my Braydon (now 13yrs old) is a patient at Primary Children's (PCMC, for spine/scoliosis) and at Shriners (for leg issues). The U of U docs practice at PCMC. There is not a ped. ortho. clinic at the U. So, the two choices you have are actually two of the BEST places in the country (world?) for treatment of scoliosis. IMHO, I would contact Shriners and apply to be a patient there. Once you have an appointment (which may take a couple of months to be seen) they will THOROUGHLY exam him and help you answer all your questions. The scoliosis specialists at PCMC will not even see a patient until the curve is over 20 degrees or if the patient has congenital malformations of the spine. Their practice is just too big to be handling "observation only" patients. Nothing against parents, but this is actually a GOOD thing.

    If you can get a radiologist to approximate a COBB measurement on an xray, that will be a start (not an accurate one, but something to use to get your foot in the door at Shriners or PCMC. They really are great facilities for kids who have scoliosis (and other issues).

    Best wishes - feel free to email me anytime (boulderfam @ hotmail . com) no spaces.
    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/

  10. #10
    Join Date
    Jan 2009
    Location
    U.S.A.
    Posts
    21

    You are not alone!

    I, too, need information once given a problem. Originally my daughter was between doctors - we took her to a local doc for strep throat. He was extremely late and did not even culture her throat...but he did say that he thought she might have scoliosis. Nice...I got her to a pediatrician and full physical...she "saw" nothing and did not order an xray. I let it pass because the other guy was a PA and did not overly impress me anyway. A year later she was getting a bag out from under the sink and her little brother (9) asked me if her back was normal. Oh my! I researched the bend over test (whatever they call it) on the internet. My husband and I checked her and we were shocked. We immediately found a pediatric orthopaedic... she was a 40 degree and a 35 degree. She did not have xrays until we saw the orthopaedic. Our insurance allows us to bypass all the referrals, etc. and the specialist took my word for it that something wasn't right.

    Good luck with all of this new information...

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