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Thread: 5 yo newly diagnosed, in total confusion

  1. #1
    Join Date
    Dec 2008
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    Question 5 yo newly diagnosed, in total confusion

    Hello to anyone reading this! My daughter went for her 5 yr physical exam and the Ped noticed her curve or bump when she bent over...sent her for an x-ray (although I've never seen one like this before...I got to stay in the room and it took only 3 seconds for the image to appear on the monitor...I immediately saw her curve). The Ped called two days later from her home...she is off from work untill tomorrow, but she left a message on my machine that Sara, my daughter, has a mild case of scoliosis and she doesn't think any more test are necessary right now and will call me Tuesday when she is back in the office to discuss this with me in detail.

    There are no cases of scoli in my family and aside from my husband having a slight curve in his spine (nothing was ever done including tests) found at a dr visit around 12 yr there are no cases on his side either. My husband does occasionally complain of back pain but never thought a slight curve was a big deal. My sister-in-law, not blood related, was diagnosed as a teen and never pursued anything and seems fine today.

    Now that Sara has been diagnosed, it seems that this is a "No Big Deal" thing and my husband, only relating to his experience thinks that the Ped will say lets wait and see and that's what we should do and I agreed before doing the research on this.

    Sara had to have had this for a while to look the way it did on the screen which means she must have had Infantile Scoli...(i had switched Ped's this year b/c I thought my daughter would be more comfortable with a female dr and the other one was way too laid back on everything I brought up to him).

    Everything I have found online is convincing me that when I have the indepth discussion with her Ped I need to advocate for more test (MRI, blood, genetic) and to see a specialist right away...or am I just overreacting? Not sure what to do and which questions to ask....right now I have two pages of questions I'd LIKE to ask. As of right now I have not one piece of information to give anyone. I will collect that info in my first discussion with her Ped tomorrow.

    Any and all advice will be greatly appreciated.....Thank you for listening.

    ~~~> Natalie

  2. #2
    Join Date
    Aug 2004
    Location
    ny
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    1,809
    Hi Natalie,

    You have a lot to take in right now, but bear in mind that scoliosis is not a life-threatening situation.

    That said, IMHO you should definitely see a specialist (what have you got to lose, right?).

    When our kids are first diagnosed, I think we all feel like "how did we not see this before" but a curve can develop quickly. They can also progress quickly, so (not to scare you) but perhaps your daughter will need to be monitored every 4-6 months.

    I'm not sure what part of the country you live in, but if you have a Shriners Hospital nearby that would be a good place to start to get an expert opinion. We go to the Shriners in Philadelphia and their reputation for treating scoliosis is superb. My son was also diagnosed at a young age, and it is important to see an ortho who is not only a scoli expert, but who sees the atypical cases (i.e., juvenile scoli cases, etc.).

    Best of luck to you - 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
    Nov 2008
    Location
    Greenfield, WI
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    414

    hi

    Hey natalie.....Im a 34 yr old woman & my curve(s) were discoved when I was in 2nd or 3rd grade. I only had one curve at the time & it was deemed as "minor". My mother took me to our reg family doc who said i had a 10 degree curve, told my mom not to worry & sent me home w/some daily excersises to do. Well......being only 7 or 8....I didnt care as I didnt know any better & only did them for a few weeks. My mother never followed up and it was left alone. I had my 1sy child when I was 22 and had sever back pain during & after labor. I also had the pain shooting down my leg & would get stuck in certain positions...fun. I went to the doc, forgetting that I had scoli & they happili reminded me..and the xrays were crazy. It had progressed & was too late to do anything becuz, obviously I was done growing, bones hardened, etc. Now...years later I have constant pain & now a scheduled fusion surgery. So, Iguess if I were you, go see a specialist now, get some opinions & ask as many questions as you can, becuz if you treat it like its no big deal,like my mother did(not her fault tho...the doc didnt seem to concerned) she may end up like me....or the 100's of other adults on this site. If its minor now, a brace may help prevent from getting worse. Def. something for you to think about.I wish you the best of luck!! hugs!!! Lynn
    Lynn -30.... something
    DxD @ 8 yrs old: 10* curve-no brace-no nothin'!
    At age 26: Thorasic 48*/Lumbar 50*
    At age 34: Thorasic 58*/Lumbar 60*
    Posterior T5-L4 Fusion Jan 14th, 2009 w/Dr Tribus
    UW Madison, WI Hospital
    **AFTER: less than 10* Thorasic/15* Lumbar**

  4. #4
    Join Date
    Jan 2008
    Location
    NC
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    8,901
    Quote Originally Posted by LynnMarie74 View Post
    It had progressed & was too late to do anything becuz, obviously I was done growing, bones hardened, etc. Now...years later I have constant pain & now a scheduled fusion surgery. So, Iguess if I were you, go see a specialist now, get some opinions & ask as many questions as you can, becuz if you treat it like its no big deal,like my mother did(not her fault tho...the doc didnt seem to concerned) she may end up like me....or the 100's of other adults on this site. If its minor now, a brace may help prevent from getting worse. Def. something for you to think about.I wish you the best of luck!! hugs!!! Lynn
    The operative word there is a brace "may" have helped. There are any number of kids and adults who were braced and still needed fusion. I suspect one of my daughters will soon be in those ranks.

    So ignoring it, especially when the surgical techniques weren't as good as they are today might have been the best choice, if only in hindsight. That is, your correction now, even with the larger curves and stiffer spine, might get you a better result in the long term than if you have fusion with an earlier technique that causes more problems down the road.

    Food for thought.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Natalie,

    Welcome from me too. I am sorry you have to be here because of your daughter, but this is a good place to share experiences and offer support.

    Scoliosis in young children is NOT common. While the "wait and see" approach may be appropriate at this time, you need to make sure. Did the radiologist guess at a curve degree? Many pediatric specialists won't see scoliosis patients unless the curve is more than 20 degrees. Anything less than 10 degrees isn't considered a true scoliosis curve. The most common "plan" is to wait 3-4 months, do another xray and compare with the first xray. If there is progression in just 3-4 months, a specialist (pediatric orthopedic surgeon) is needed.

    An MRI may be warranted if the curve continues to progress, or if she has any other outward signs of needing an MRI scan. Don't put the cart before the horse. Take this one step at a time. Like Maria said, scoliosis is rarely an emergent situation. You have time to research and find the appropriate care for her.

    My son, Braydon, is now 13yrs old. He was born with congenital scoliosis and a few other structural anomalies. His scoliosis was very progressive, requiring surgical intervention at a very young age (11 months old). I'm telling you this to show you that every scoliosis patient is unique and different, requiring unique and different management/care. If your daughter doesn't have any other medical conditions, then the plan above (waiting 3-4 months and re-xraying) is likely the right plan. If she has any other medical issues (GI issues, muscle tone issues, pain issues, leg issues, etc.) then I'd be seeing a specialist sooner than later.

    You are not alone. Many parents here have been down a similar road. Take lots of deep breaths. This is a condition you will be monitoring (if nothing else) for the rest of her life, especially the rest of her growing years. Many best wishes to you.
    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/

  6. #6
    Join Date
    Dec 2008
    Posts
    4

    Many Thanks

    Thank you all for your replies...I appreciate it very very much. I will wait to see what her Ped is going to say and recommend and then take it from there. Sara does have other issues that all seem minor and not relative to anything else, but maybe if I put all her cards on the table in front of the Dr, she will be able to sort what is important and worth noting.

    Again thanks to all who have listened and given advice.

    ~~~> Natalie

  7. #7
    Join Date
    Dec 2008
    Posts
    4

    Thumbs up Good News

    Sara's Ped called and informed me that the curve is only at 7 percent. Whew! According to her she may outgrow this, seems to think that it is likely that within another growth spurt is the possibility of the spine straightening itself. Anyone ever experience this? I'm keeping my fingers crossed. Next test in June.

  8. #8
    Join Date
    May 2010
    Location
    Alberta, Canada
    Posts
    1
    Hi there!! Wow, while reading this I'm looking back over the last 2 years and reliving what we have gone through! Our second daughter, now 7, was 5 when her Ped noticed the same things as yours did! We had an x-ray (thankfully) and the degree was 15 degrees. We were referred to a scoliosis specialist, but were told we probably wouldn't get in right away because the curve was so small. Well, she was right, we just got in this year (2 years later). Fortunately, our Ped had x-rays done, and then when we got in with the specialist, he did x-rays again which showed the curve now at about 21 degrees. Because we had the first x-ray and he could see progression, she is now wearing a brace. He said that because she is so young and the curve already progressed, we want to be precautionary. I'm ok with that! But, I haven't stopped there... I have done a LOT of research since then and we are also seeing a chiropractor, physiotherapist, doing rolfing and will be getting a home program for pilates too! There is probably lots more I could say, but I don't want to overwhelm you anymore! Anyhow... we see the specialist next week and have her first x-ray since getting her brace and starting all the exercises, so we'll get to see first hand what is really happening! I'm believing that we are making a difference for the better!! We don't have any scoli in any of our families either... except that I have recently found out that I do have a curve in my back, which I wondered after doing all my research because of all the back/hip problems I have always had!

    Have a great day! Don't worry... you are definitely ahead of the game! Good for you!
    Rachelle
    (feel free to email me if you want any more details)

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