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Thread: My almost 5 year old son and scoliosis

  1. #1
    Join Date
    May 2005
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    5

    My almost 5 year old son and scoliosis

    Hello,

    I am new and a very worried, teary eyed parent. It is very frustrating because the doctors and nurses keep telling me I am over-reacting and that scoliosis is no big deal. It sure seems like a big deal to me. I am looking for support and answers. I have read through many posts and find much of what I read inspiring. I hope you will bare with me while I unload what is troubling me.

    My son Abel Jr., we call him A.J., went for his pre-kindergarten physical last week. The Dr. noticed that one side of the chest felt more pronounced than the other and said he would need an x-ray. I was taken off guard and made the x-ray appointment that same day in a panic. I was so confused I didn't even think to ask questions.

    We got the x-rays done this past Monday and I called today for results. The Doctor left a message on my machine saying my son should be referred to an orthopedic surgeon. I just listened to the message twice with my mouth hanging open. I called my husband at work confused and then called the doctor back. Basically what she told me was that the x-ray revealed that my son had the following: Levoscoliosis of the thoratic spine, asymmetry of the thorax. She also told me he had a moderate curve and definitely needed to see the orthopedic surgeon.

    My doctor has the orthapedic office call me to set up an appointment. Now the secretary tells me that the soonest they can do is July 25th. I asked her why this was 2 months away and I was a very worried parent. She told me, "You have nothing to worry about. Everyone has scoliosis."

    I was dumbfounded. If everyone has scoliosis why don't I know anyone who has scoliosis? I am currently looking into a different doctor to take my son to. I have many questions and I'm realizing I need to ask for more details as to my sons condition. I am hoping that some of you might be able to guide me. Do you think I am over-reacting? My son is currently 4 and will be five on July 28th. Isn't it a bad sign that the scoliosis has already affected his rib cage and is moderate at such a young age? Should I be willing to wait the two months for an appointment? If anyone lives in the New Jersey area, do they know of any good facilities, resources, or pediatric specialists that I could go to?

    I know I am asking a lot of questions but I am confused and frustrated by the lack of help and passive attitude of both my son's pediatrician and the specialist's staff. I thank you so much in advance for any help or information you might offer.

    A Very Bewildered Mother,

    Michele

  2. #2
    Join Date
    Jun 2004
    Posts
    55
    UGH! I had a long reply all done and my computer failed me and the window closed!

    ANyway... first off ((((hugs)))))) it is normal to be concerned and worried about your child having scoliosis. When you look for a new specialist, check out the Scoliosis Research Society http://srs/org for physicians that specialize in scoliosis. Especially you want to find one that specializes in pediatric spinal issues... kids are very different from adults and need their own specialist.

    I would not be happy with waiting 2 months either. My son was seen in 3 days for his, but his curve was also pretty severe when first found (65 degrees). you dont mention the degree of curvature, did the doctor mention anything other than moderate? I dont like the sounds of the office staff either.... "you dont have to worry, everyone has scoliosis".. Excuse me? She is a clerk, not an MD. But of course thats me, I have awesome physicians we work with (my son has lots of issues that require a number of different specialties) and none of their office staff sluff me off like that when I am concerned. Yes, lots of people have scoliosis, many of them not severe and just require keeping on eye on it, but it is important to be evaluated so you know where the curve is at and for bracing to begin if that is what is required.

    Go ahead and ask any questions you may have, there are some great people here with lots of good information.

    Hugs, Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  3. #3
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329

    Pediatric Scoliosis Dr. in NJ

    Michele - what part of NJ do you live in? My daughter has been seeing a pediatric ortho that is very knowledgable with scoliosis for the past six or so years. I highly recommend him. Here is his information:

    Dr. Douglas Avella
    140 Chestnut Street
    Ridgewood, NJ
    201-612-9988

    He has an associate for the past few years, but I suggest you ask for him to see your son. If not, his associate is also good. Our daughters went to high school together so we know him both in and outside the office - a very, dedicated man. He will answer any and all questions and spend as much time has he has to with each patient. Good luck and let us know how things are going. This site is wonderful and very helpful to all. All the best, LYNN
    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
    2000 Partial Rod Removal
    2001 Right Scapular Resection
    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

  4. #4
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    hi michele,

    you have every right to be confused and a bit angry after your treatment. it is unusual for children to have scoliosis at this age so that comment was not appropriate. anyway, i live in massachusetts and my son was diagnosed with scoliosis at 18 mo - therefore he has infantile idiopathic scoliosis, but we did end up going to see a pediatric ortho in nj for a second opinion. his name is dr. roy nuzzo and he is in summit, nj. is this close to you? this is his information:

    Pediatric Orthopedics PC

    main office
    Suite 750, main building
    Overlook Hospital
    99 Beauvoir Avenue
    Summit, New Jersey, USA
    zip 07901

    tel: 908 - 522 - 5801

    they also have a website: http://www.pediatric-orthopedics.com/

    another good place to go is the shriners hospital in philadelphia either dr. betz or dr. andrea (sp?). they treat a lot of infantile and juvenile scoliosis patients.

    3551 North Broad Street
    Philadelphia, PA 19140
    Telephone 215-430-4000
    Clinic 215-430-4073
    Fax 215-430-4126
    Toll-free 800-281-4050

    http://www.shrinershq.org/shc/philadelphia/index.html

    good luck!
    deshea
    mom to lucas 3 1/2 yrs old with infantile scoliosis; currently in his 3rd cast. treated at shriners in erie, pa by dr. sanders

  5. #5
    Join Date
    May 2005
    Posts
    5
    Thank you everyone for the information and support. It is such a relief to have found a place like this forum. I live in the middle of NJ on the shore, Summit being about a two hour drive I believe, Ridgewood one hour and Philadelphia one hour. But I totally appreciate the names. I have found Shriner's and plan on calling tomorrow. I don't mind making the drives at all if it means my son will get the care he needs. I will stay in touch and continue to read the stories of others. Thank you again.

  6. #6
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    Good luck, Michelle, and I second everything the others said about getting your child seen as soon as possible, especially if they hinted that it is a moderate curve. Just a thought: if your son will need treatment over a long period of time, depending on your insurance you might look at the threads(using the search engine) on Shriners' care - they are usually great and are completely free for kids. All the best. Laura
    30y/o
    Upper curve around 55
    Lower curve around 35

  7. #7
    Join Date
    May 2005
    Location
    sinking spring pa
    Posts
    4

    9 months and needs a brace

    My daughter has scoliosis, she is 9 months. She has severe scoliosis but I do not know about the curve degree. We are going in july back to Hershey hospital to meet with the doctor. The first visit the doctor had an emergency and we just had x-rays done. She will have more x-rays done at the next appointment too. Would she be fitted for a brace then or do they wait longer until she would get bigger? I know nothing about this and I am trying to get as much information that I can. Which are the best braces, are casts better? She is so small and to get a brace at this age is so sad.

    shannon

  8. #8
    Mary Lou Guest
    Shannon,

    May I ask who the doctor is you will be seeing at Hershey? The reason I ask is that my 13 1/2 y.o. daughter had surgery there almost six months ago and her doctor is Dr. Lee Segal. He is awesome! Also, in case you are interested, we have a scoliosis support group in Hershey and our next meeting will be June 14th. If you want more info., please let me know.

    Mary Lou

  9. #9
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    Sep 2003
    Location
    Northern California
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    6,797
    Michele...

    If you get an appointment elsewhere, be sure to pick up your son's x-rays to take with you. If his scoliosis is large enough to need treatment, he'll probably have quite a few x-rays in his lifetime, and it certainly wouldn't hurt to start limiting his exposure now.

    Regrds,
    Linda

  10. #10
    Join Date
    May 2005
    Posts
    5
    Linda, thank you for the advice and I most certainly will. I've already thought about that aspect of scoliosis...the children get so many x-rays. In fact, I will call tomorrow and make sure I can get copies from my pediatrician. I called and left a message at the Shriner's Hospital in Philadelphia requesting an application and will call the doctors recommended tomorrow as they were away for the long holiday weekend. I really appreciate all the help.

    Shannon, I wish I could offer more advice but being new to this I am still trying to deal with the emotional aspects as well as the planning and information seeking aspects. I think remaining your child's advocate and asking any questions you can think of is crucial.

  11. #11
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    Sep 2003
    Location
    Northern California
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    6,797
    Hi Michele...

    I wouldn't settle for copies. Unless they're digitial, the copies just aren't as good as the originals.

    Regards,
    Linda

  12. #12
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    May 2005
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    5
    Thank you Linda!

  13. #13
    Join Date
    May 2005
    Location
    sinking spring pa
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    4
    It is difficult to wait for a month to get your appointment. There is a positive in waiting, I make a list and put it on fridge. I always have questions and I never seem to have enough time to get my questions in order. I have a lot to ask the doctors and my list is getting longer but it helps me get organized for the visit. Hopefully I do not forget anything.

  14. #14
    Join Date
    May 2005
    Posts
    5
    Deshea, thank you for the two suggestions. I have gotten an appointment with Dr. Nuzzo from Overlook on July 14th.

    Shannon I am going to take your suggestion and start my own list today and post it to the fridge.

    I did pick up the x-rays and made a point to request the actual x-rays, but of course got copies and have to go back and throw a fit so that they will give me the actuals. They are currently telling me it is not "their" policy. I am interested to know why it is not their policy to do what is in the best interest of my son and their patients. My son also needed blood work done and his pediatrician wrote Alex on the prescription instead of Abel so it took three hours of waiting with a four year old at Quest Diagnostics while they waited for his Pediatrician to fax the new prescription...argh! Things are so discombobulated in the medical community around here that it is very disheartening.

    Hope all is well with all of you and your children!

  15. #15
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    hi michele,

    i'm glad that you are going to a couple of places so that you can make sure you have enough medical opinions to make your own decision on the treatment for your son. i know that this has been said in many threads, but you are the best advocate for your child.

    just as an aside, has your son had an mri yet? mmm, probably not since you guys are still trying to get into an ortho. just a heads up since that is one of the first things they do to rule out other spinal issues. this does require sedation, fyi.

    just to throw another name in the mix since i know that dr. nuzzo will probably prescribe a brace if the curve is moderate , another ortho that does do casting in the area (if you consider that as an option) is dr. moskovitch (sp?) in nyc. he has been interviewed on this site (nsf, that is) regarding early onset scoliosis (= infantile) and advocates casting.

    i know -- too much information, but after 2 years of dealing with this, i have lots (read: too much) advice.

    good luck and let us know how the upcoming appointments go.

    deshea

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