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Thread: 14month old with congentile scoliosis

  1. #1
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    14month old with congentile scoliosis

    My name is Sue, this is my first time posting. We just found out 4months ago my daughter Hannah has congentile scoliosis. She has 2 vertibraes that weren't fully developed and 14 ribs on one side and 13 on the other. We've seen 3 pediatric orthopeadic surgeons saying that she'll probably need surgery around the age of 3. They tell me they want to wait and see. She's had all tests related to this to make sure nothing else is wrong and they've all come back great. My question is that they say not to see a chiropractor and I was wondering if anyone has ever seen one and has had good results with it. I have seen a chiro and he says that he can help her. My heart is torn because I want to help her anyway I can, be it exercises, physical therepy or anything else that may help but the orthopedic says not to see a chiro, I want to do the right thing for my daughter. I'm so confused here's one who's telling me one thing and someone else telling me another. The chiropractor is very highly recommended and has been to the best schools. Can anyone help me? Any suggestions????
    Thanks

  2. #2
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    Hi smedina1 - welcome to the board.

    Having an infant diagnosed with congenital scoliosis can be an overwhelming experience. BTDT. Remember that you are not alone. There are quite a few kids around who have congenital scoliosis and lead very active healthy lives. Congenital scoliosis is a *condition* that you need to be aware of, but there is rarely a quick fix treatment.

    A chiropractor who says they can help her makes me very suspicious. What can he *help* her with? Not much, IMHO. The bone structure in her spine and ribs (in that small area) did not form correctly during fetal growth. No amount of manipulation will magically make the bone structure normal again. Same with bracing for congenital cases - a brace can't fix what nature didn't form correctly in the first place.

    The best you can do for your little one is to have a PEDIATRIC orthopedist who specializes in spine malformations watch her. She should have checkups and xrays every 3-4 months until age 2-3, then every 6-8 months after. Every persons spine goes through 2 major growth spurts in a life time. One by age 2-3, the other at adolescence. That's why you need to keep a closer eye on her before age 3. For example, my sons congenital curve measured 50 degrees at age 8 months. Six weeks later, it measured 75 degrees. His spine had gone through a major growth spurt and the congenital malformations did not support the growth on the concave side of the curve.

    The other thing that will be very helpful to your daughter is to be VERY active. The more active she is, the stronger her back and side muscles will be. My son LOVED to hang on things. The PT told me that its because his body is trying to balance itself, but because of the bone structure, it couldn't. We made him a special "monkey bars" that he could hang on anytime he wanted. Hanging stretches the side weaker muscles and helps them be stronger then they typically would be.

    I'm assuming the congenital curve is in her thoracic spine. You didn't mention if they gave you a degree of curvature... most curves over 35 degrees as infants will continue to progress and get worse. Another strong argument for having the RIGHT physician supervizing her care. If the curve in the thoracic (chest) spine gets too severe, it can cause pressure and trauma for the lungs and other internal organs. You don't want that to happen. Again, a good orthopod will know what to watch for. If the docs are recommending fusion surgery, PLEASE get more opinions. Fusion will stop the progression of a curve, but it will also stop the vertical growth of the fused part of the spine. Fusion has its time and place for congenital cases, but it should be avoided for most infants and young children who have growth remaining in their spines.

    I hope this helps you sort out some of the variables involved. Good luck and 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/

  3. #3
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    Thank you Carmell for replying to my post. I've never posted before. And thank you for your input. My husband and I have discussed what we should do. He said that he wouldn't mind any physical therepy, he said that would be great. My niece works alot with pt (excuse my ignorance with some of the lingo, I'm not very familar with it, I mean the abbreviations) and she said that she would set up some exercises that we can do and some aquatic excercises. My husband doesn't like the fact that the chiropractor is manipulating her spine. For her being so young.
    I'm a little hesitant but I do understand somewhat of what he is trying to do. For now we are not going to take her to the chiro. I'm one who believes in chiros, but maybe for my daughter right now isn't right. We both have to agree on it.
    Hannah's degree in her thoratic area was 53 degrees and that was 2 weeks ago. I just want to do something to help her and when the orthopeadic surgeon tells me just to wait and see, I just can't believe that there is nothing I can do, even exercises. We are seeing the best pediatric orthopedic surgeon in Michigan. They are at U of M Mott Childrens Hospital.
    Can you tell me how your son is doing and how old he is now? Just being her mom wanting everything right for her. It is so nice to hear that I'm not the only one out there. I've been searching for people on the internet and this site seems to be the best one out there. Thank you so much for all of your help. It's so nice to know that I'm not alone and that there is hope out there.
    Thank you again Carmell. Please keep in touch and I will keep everyone posted on how she's doing.

  4. #4
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    Hi smedina1,

    You mentioned you are seeing an ortho at U of Michigan... is your surgeon Dr. Farley? I've heard very good things about her. She is supposedly doing research on congenital scoliosis. I've been trying to contact her about her research, but she's very busy and hasn't returned my emails, yet. I'm patiently waiting...

    Braydon is doing very well. He is very active and does most everything a healthy 9yr old boy would like to do. He loves to ride his bike, play on the playground equipment, play soccer at recess, dig in the dirt, collect bugs, etc. Nothing slows him down for very long. He also has a very good attitude about having surgery every 6 months (to lengthen the rods in his back/chest). He thinks having surgery is a glorified vacation from school! Not something so emotionally heavy as surgery - silly mom!

    As far as exercises, please check with your doc first, but here are a couple of suggestions:

    1. When she's sitting on the floor, put a folded towel under her bottom on the convex side of her curve. This forces the weaker side to support her back.

    2. Have her stan with both feet flat on the floor. Lift a treat over her head and have her life her arms above her head and reach for it. Move slowly from one side to the other... concentrating on stretching the weaker side. Try to keep her hips level (sometimes you need someone else to hold her hips while doing this exercise). This may be more useful when she's older.

    3. Sit her on a large rubber ball (an exercise ball works great). Hold her by her hips and move her body side to side, slowly. Again, concentrate on the weaker side moving and stretching a lot.

    There are others... but I'm confusing myself here. If you need clarification on these exercises, let me know. Written word is hard to *show* what I mean.

    Good luck and I wish you the best!
    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
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    Thank you Carmell, and yes Dr. Farley is one of the specialist that we've seen. The other is her mentor Dr. Robert Hensinger.
    Dr. Farley works very closely with him. He has pioneered this surgery. I'm just not sure who to choose. There both great, but Dr. Hensinger I understand is going to retire soon. So we will probably go with Dr. Farley. She's wonderful to from what we hear. We went and sought out the best. I haven't heard about her reseach on congentile scoliosis but I will try and find out.

    I'm glad to hear that Braydon is doing well and that he can enjoy his childhood. Why does he have to have surgery every 6 months? My doctors said it would probably be every year or so. Maybe it's how fast they grow.

    Thanks for the suggestions for exercise. I'll try some of them, and I'm going to take her to swim classes too.

    I'll keep you up to date with Hannah. I first have to get another appointment for her next 6 month check up and see what they say then. Right now they're telling me whe she's about 2 1/2 or 3 that she'll have surgery.

    Take to you soon.
    Sue

  6. #6
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    Hi Sue,

    I'm glad you are seeing good docs. Dr. Farley did scoliosis surgery on a girl I know this past January. She has some of the same medical issues that Braydon has. She has done very well since surgery and she LOVES Dr. Farley. If you get to ask Dr. Farley about her research, tell her I'm still interested in hearing from her too.

    I think swimming will be good for her too. It certainly won't hurt her. I also rememberd one thing Braydon loved to do - he loved (and still does) to HANG on things. He hung on anything he could find. He hung on the edge of the table, the bunkbeds, etc. We made a homemade monkey bar set for him out of PVC pipe so he could hang whenever he wanted to. Hanging and letting their body weight act as counterbalance/leverage is also good for the muscles on the weak/concave side.

    Keep up the good work and I wish you the best.
    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/

  7. #7
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    Carmell,
    I'm so glad to hear that someone else knows about Dr. Farley. It's always great to hear success stories. I'm going to have to put some kind of bar so that Hannah can hand on it. I know that she'll love it. That is a great idea. If I go with Farley I will mention you to her and ask about her research. I'm startly to lean towards her, the other doctor Dr. Hengsinger, who I believe is Dr. Farley's mentor, may retire and I want someone who will be with her throught her life.
    I'll keep you in touch. I have an appt with Early On, for Hannah's PT. Which I would never have know about if I hadn't gone on the web. People like you are so great, sharing their experiences and information. I hope she gets accepted.
    Take care.
    Please keep me updated on your kids too.

  8. #8
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    Our 19 month old daughter with congenital kyphosis

    Our 19 month old daughter has congenital kyphosis. she also has one extra rib. she has 2 extra malformed hemivertebrae. at the age of 1, she had posterior spinal fusion surgery at NYU by Pediatric Orthopedist Harold Van Bosse and spinal surgeon Thomas Errico. They corrected her spinal curve from 51 degrees to approximately 17 degree. She wore a plastic brace for three months post-operatively. We only took the brace off for bathing her. As of January, 2005, her curve has increased to approximately 30 degrees and there is very little fusion of the surgical area. The doctors decided to use metal wiring instead of bars and screws because she is so small. The doctors are mulling over two types of surgery. The first is to add more bone with the hope that the new bone will help any future fusion. The second option is more drastic. It is to perform a combination anterior and posterior hemivertibrae excision. We decided to go to the Children's Hospital of Philadelphia for a second opinion (Doctor John Flynn) and a third opinion to Dr. David Wayne Polly in Minneapolis, Minnesota at the Fairview University Hospital. We also have a son who is 3 and a half who has no spinal problems at all. Has anyone on this thread ever heard of these procedures being done on a child so young and if so, can you give us some feedback or suggestions?

  9. #9
    Mary Lou Guest
    greggo,

    I'm sorry to hear about all the problems you are having with your daughter. Since you are willing to travel to Philly, have you thought about going to Shriner's of Philly for another opinion? My 13 y.o. daughter was seen there by Dr. Randal Betz. Unfortunately, he is a very busy man and it takes months to get into his surgery schedule. However, I've met several people on this forum who have taken their young children to Dr. D' Andrea (spell?) and have had excellent results.

    Best of luck.

    Mary Lou

  10. #10
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    Hi Greggo72,

    It sounds like your little one had fusion surgery that didn't fuse. I agree with Mary Lou - it would be a good idea to get another opinion from a doc who has extensive experience with congenital kyphosis/scoliosis in infants. The excision surgery is a very risky surgery. I know a girl who had hemivertebrae excision surgery at 11 months old to correct a 100 degree curve (curve was reduced to 30-ish degrees). She is now 6yrs old and doing well. No other surgeries have been needed. My biggest reservation (besides the obvious spinal cord risks) would be that she didn't accept the previous fusion surgery (meaning her bone structure didn't fuse), so would another excision/fusion surgery be successful? Maybe they should figure out why the fusion was unsuccessful before trying something so extensive.

    My son had fusion-only surgery (no instrumentation) at 11 months old. He is fused from T5-L1. That part of his spine is very rigid. It no longer has vertical growth potential. He is now 9yrs old and doing well. At age 6, he had two vertical adjustable rods placed (one to support the spine and the other to support the right side of his chest). The rod placement has stablized his curves and given his right lung more room to grow. If this technology had been perfected when he was an infant, he would have had even more benefits from this surgery.

    I believe Dr. Betz or Dr. D'Andrea (sp? - I even met her briefly and still don't know how to spell her name) at Shriners in Philly would be a great place to start. Another good place would be Dr. Emans in Boston. I would think these docs would be able to give you a good recommendation for the best treatment options for her.

    Good luck and 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/

  11. #11
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    Greggo,
    My daughter is now 18 months old and we just had her check at the end of Dec. and her curvature has increased to 60 deg from 52 deg.
    Our doctor Dr. Hensinger from U of M Mott, told us for us to put
    her in a brace (TSLO) he wants it to slow down her increasing curvature. He wants to wait until she's at lease 2 years old to operate. She has congential scolisosis and kyphosis. 2 hemivertabraes and 2 extra ribs on one side and one extra on the other. I'm not sure what kind of surgery she's going to have, but I do believe it will be with growing rods. She gets her brace on the 25th and then she will see Dr. Hensinger Feb 2nd. I'll keep everyone updated on her progress when I can. My husband is out of the country until the end of February and will have to go back. It's been pretty busy here. I try and get on when I can.
    Please keep me update on your daughter. I'm was suprised to hear she was operated on so young. I know that Dr. Hensinger and Dr. Farley are very highly recommended and they are out of Ann Arbor, Michigan. U of M Mott Childrens Hospital.
    How is your daughter doing otherwise? And do you do any exercises with her?

  12. #12
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    reply to smedina

    Our daughter is doing great. Before her surgery, we were deemed eligible to receive early intervention for Ariana because she had low muscle tone and she was slow in terms of eating. Since the age of 10 months, she has been receiving physical, occupational and feeding therapy. She is caught up on everything and still receives occupational and physical therapy. She is a tough girl. We were recently told to put her back in the brace also (just like your daughter) to stop progression of the curve and to avoid any damage to the metal wire fixture in her fusion area. We were told to apply for disability for her but we do not feel our daughter is disabled in any way. Her cognitive skills are above average and she is positively not disabled. We are going to ask about the growth rods when we visit CHOP and Minnesota this month. Keep us posted about your daughter. Thank you.

  13. #13
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    Greggo, It's great to hear that your daughter is doing so well. I just had a few questions about the brace. My daughter Hannah hasn't gotten it yet but when she does, did it take long for your daughter to get use to it? And did it restrict her from anything?
    Is it hard for her to get up and down from a sitting position? Or to ride in a car seat? I just want to prepare myself so I can make things easier for her. Any advice???? Also, did it slow down her progression?
    May I ask why did they operate so early in her age? I'm so happy to hear such great results. I'm so very happy that she is doing well and I know how stressful this all is. How are you doing????
    It sure is great knowing that there are other parents out there going through similar situations.
    Thanks again for all of the support.

  14. #14
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    Is your daughter going to get a clam-shell brace? that's what our daughter has. It has two parts that are held together by velcro straps. If that is the brace your daughter will have to use, then she may hate it at first. Our daughter learned how to walk while she was in the brace so now she bends down at the knees instead of leaning over. It is relatively light but does have some weight. since your daughter already walks (presumably) it may just throw off her balance at first. as for car seats, all we had to do was loosen her buckle. Make sure the brace doesn't hit your daughters legs while she is sitting because it can cut off her circulation. When we got the brace after a measurement, the brace didn't fit. The top was too high and ariana started chewing it and the bottom ran too low so it dug into her legs. also, she learned very quicklyn how to remove the velcro straps. Many times we woke up in the middle of the night to see the brace totally off and our hearts in our collective throats. Just make sure she wears a onesie under the brace and a bigger onesie over the brace so she can't take it off. while she had the brace on, her physical, occupational and eating therapy continued. the therapists focused more on her balance and how to bend without moving her back. her posture will be good because of it!! The reason Ariana had her surgery so young was because her curve was progressing at a rate of 10 degrees every six to eight weeks and something had to be done. the doctors were worried about her spinal cord. an untreaded kyphotic curve can eventually bend so much as to injure the spinal cord. so as you can see, we had no choice but to allow for surgery. when ariana was 12 months old, her curve was 51 degrees. keep on posting and keep us posted!!

  15. #15
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    Thank you so much for all of your advice. I'm so glad to hear that Ariana is doing so well. I am going to keep in mind what you told me about the brace when we get it next week. I'm going to get some oneies. I know it'll be a bit of a struggle for us at first but as long as it can slow down her progression it'll be worth it. Did yours slow down the progression. I know how heartbreaking all of this is. If you can think of anything else that may help us in please let me know. What you've told me has already helped. When is Ariana's birthday she must be close to Hannah's. Her birthday is June 11, 2003.
    Thank you so much for all of your help. I'm hear too if you need a ear or shoulder to lean on.
    Thank you so much again.

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