Results 1 to 5 of 5

Thread: whats the right kind of Doc? 1 sick twin

  1. #1
    Join Date
    Jan 2006
    Posts
    13

    Question whats the right kind of Doc? 1 sick twin

    Hello Everyone,

    I first saw my son Keegan, walking with a tilt at age 11 mos. I then striped him down to look at his back and saw a curve. I was so shocked that I had not noticed before! He had x-rays right away that confirmed scoliosis. I did not know enough to ask the degree. I have since deduced that it was between 10-20 degrees. That was about 8mos ago; I can feel that it is worse now and maybe twisting inward a bit. Insurance has finally approved seeing a specialist, we go February10.

    Iím not sure that the specialist really will be a ĒspecialistĒ. We are seeing Thao Duong MD. A Physical Medicine and Rehabilitation doctor (PM&R). She works at Santa Clara Valley Medical Center in California. I read her bio. And it says she specializes in head injuries. This is who our pediatrician referred us to, I donít know if itís because sheís good, or if our low income insurance program will not cover anyone else. We already have to go to the next county, as Santa Cruz county does not seam to have anyone who works with toddlers.

    One odd thing about all this is my son has an identical twin brother who is fine no curve at all and is actually taller and heavier. At birth the pediatrition predicted that the smaller baby would catch up in size. The oppisit has happened. Conley the bigger healthy baby is getting bigger and bigger while Keegan grows but falls further and further behind. I canít find anything on the net about only one identical twin having scoliosis. Its very hard to watch one boy with a perfect body, while his brother that should be perfect lags behind and struggles to achieve his physical abilities. I fear no mater what treatment Keegan ends up needing, he will feel resentment that his twin was born strong and healthy, while he has to suffer in one way or another. I would very much love to hear from or about other twins. I welcome all ideas and suggestions people have for me. Thanks for reading. Best wishes for your own situations!

    Sincerely,
    Tiffany
    Mama to 5 boys ages 12, 9, 4, 20mos, and 20 mos.

  2. #2
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    Hi Tiffany

    Your son needs to see a paedeatric (sp) orthopaedist who is experienced in spinal issues.

    What will need to be looked at by the orthopaedist is whether your son has idiopathic (no-known cause) or congential (due to a malformation in the spine. They may also do a MRI. From there they would work out a 'plan of action' for your sons treatment

    Have you looked into the Shriners Hospitals??. They provide specialist orthapaedic as well as burns care to children for free. The Hospitals run on money raised by the Shrine Men. It doesn't matter whether someone earns 10, 000 or 100,000 a year, the care is still free. I have heard nothing but good things about them, I have read glowing reports from parents and children that the care they provide is excellent and 'top notch' and they are right up their with some of the best doctors in the world and are right up thereon the latest developments and technology.

    There website is

    http://www.shrinershq.org/

    Being in Australia, I'm not sure where the nearest one would be to you. However, assitance can be provided by Shrine clubs with transport costs etc. Applications can be done over the telephone or online.

    Good luck

    Alison

  3. #3
    Join Date
    Jan 2006
    Location
    Erie. PA
    Posts
    4

    Red face Tiffany with Twin Boys

    Hello Tiffany,

    Your son's curve is at 20 degrees? I am caring for a 16 mo old who has a 45 degree curve and will start serial casting on february 28th - there are lots of success stories on this treatment. It is offered at Shriners in SLC, Utah - there are families who come from all over the country to Erie Shriners and SLC for this service. If his curve not that bad they may just offer bracing. Best advice I can give is to do plenty of reserch. Here is a helpful website http://www.infantilescoliosis.org/ and also yahoo health groups infabtile_scoliosis - many families with similiar situations belong and they are all so helpful! All children are equally special and I doubt one brother will resent the other when he is going to end up that much stronger and have to overcome the obsticles. Your healthy boy will grow a remarkable compasion for your son with scoliosis - if any thing he may end up a bit jealous over all the attention and care your scolio baby will be receiving. I understand bracing can stop the curve in your son's back and the new casting procedure corrects the curve. You should get a couple of opinions on his DX: as my understanding is insurance does cover this?
    Best of Luck to you and your boys - WOW I bet you are a really busy mommy!
    Stay in Touch!
    Linda & Mariah in PA

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Tiffany,

    Welcome! I'm sure having 5 boys in the house keeps you on your toes! Good luck with that.

    The person you are seeing in Feb. is probably not the best for treating infants/toddlers with scoliosis. Like the others said, he needs to see a PEDIATRIC orthopod who has extensive experience treating kids like him. There aren't many, but there are some very good docs.

    Also, remember that no two scoliosis cases are alike. What treatment option works for one, may not be the right one for another. It means unique treatment for unique situations.

    If you can see and feel a curve in his spine, then I'm afraid its not "just" 10-20 degrees. You can ONLY know a true curve measurement with a spine xray. When you see a ped. ortho. you need to know what degree of curve there is, whether its congenital or idiopathic, where the curve is located (thoracic or lumbar spine or even cervical)... things like that.

    If he's been growing but slowly, you want to make sure he doesn't have any other medical issues going on that you may not know about. If he has congenital malformation of at least one vertebrae, he needs to have his kidneys and possibly heart checked to make sure they are formed correctly. Also, scoliosis is rare in very young children, so he'll eventually need a full-spine MRI to rule out any spinal cord issues. Its hard not to compare, especially with twins, I'm sure, but try to do what's best for each individually. If he's growing at his own rate, then that's great.

    As for worrying about him in the future, that's probably not something to concentrate on at this point. Continue to love and care for both boys (all the boys) as you normally would. He will grow and be independent and secure within himself if he knows he's loved. Concentrate on making sure you know as much as you can about his spine issues and anything else that may be going on. That's most important right now.

    I also agree that Shriners would be a great place to get an opinion on how to help him. They deal with kids who have orthopedic problems every day. Depending on which hospital you go to, they may not have the expertise to deal with a toddler like him, but they would be more knowledgeable than a Rehab doc, IMHO.

    Good luck!
    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/

  5. #5
    Join Date
    Jan 2006
    Posts
    13

    Smile Thank you, the more info the better!

    Hello Alison, Linda, Mariah and Carmell,

    Thank you so much for your information and support!
    I will defiantly call and talk to shriners I found one in Sacramento California, itís just 3-4 hours from where we live. After x-rays our family Doctor said we needed a surgical consult, very scary. Funny then that he is sending us to a PM&R and not a surgeon!

    Iím so grateful to all of you because, now Iím armed with other options and will know what kind of questions to start asking at our coming appointment.

    For now at least Keegan and Conley do not know they have any real differences. They are just two loving brothers quick to help each other up if they fall, hug if they cry, and share cookies if they can get their hands on them.

    I still welcome any information anyone feels l should know.

    Many thanks,
    Tiffany

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •