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Thread: Not my second daugther too

  1. #1
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    Not my second daugther too

    The girls had their physical today.

    My younger daughter’s shoulders have always been slightly rounded (this has been a problem for her in gymnastics), but recently her lower spine has been looking as though it is hyper curved. I marked it down to being a mom with an overactive imagination but, decided to ask her ped to check it out during their upcoming physical. Before I could bring up the subject, the ped informed me she was sending my 12yro for a scoliosis x-ray. I started to ask her if she meant kyphosis or lordosis instead of scoliosis, but realized I didn’t know much about either type of curvature and the ped wouldn’t be able to answer my questions anyway, so I let it go.

    What would be the odds of BOTH of my girls having scoliosis?

    I am so upset.

    My heart sank as I scheduled an appointment with an ortho today. We’ll see him on the 24th after she returns from her STEM camp.

    A Mom

  2. #2
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    Wow I am so sorry to hear that. But you really need to wait until the surgeon weighs in on this. Most curves are small and never progress. Try to keep that in front of your mind.

    I think there is only about an 11% chance a full sibling will also have AIS but I am not sure about that.

    Good luck.
    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."

  3. #3
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    Question not accurately presented

    Logically, you are right about the risk of progression and waiting until an ortho has seen my child. At the moment, however, I am thinking with my emotions.

    My husband just came home and reassured me our girls are doing what they are supposed to do--worry their parents. A hug goes a long way. I'm awfully glad I married him.

    My question about the odds of my second daughter having scoliosis wasn't fairly presented. Our children are adopted from different families. I was thinking about the small percentage of children with the disorder and wondering what the odds were against both of our girls having it. In case anyone else is asking the same question, but considering siblings by blood, here is the first article I came across after I read your response. I didn't check to see if it is of good quality, but did note the location was reputable.

    A Mom

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2674301/

    Curr Genomics. 2008 March; 9(1): 51–59.
    doi: 10.2174/138920208783884874
    PMCID: PMC2674301
    Understanding Genetic Factors in Idiopathic Scoliosis, a Complex Disease of Childhood
    Carol A Wise,1,2,3,* Xiaochong Gao,1 Scott Shoemaker,4 Derek Gordon,5 and John A Herring2,6
    Author information ► Article notes ► Copyright and License information ►
    This article has been cited by other articles in PMC.
    Go to:

    Abstract
    Idiopathic scoliosis (AIS) is the most common pediatric spinal deformity, affecting ~3% of children worldwide. AIS significantly impacts national health in the U. S. alone, creating disfigurement and disability for over 10% of patients and costing billions of dollars annually for treatment. Despite many investigations, the underlying etiology of IS is poorly understood. Twin studies and observations of familial aggregation reveal significant genetic contributions to IS. Several features of the disease including potentially strong genetic effects, the early onset of disease, and standardized diagnostic criteria make IS ideal for genomic approaches to finding risk factors. Here we comprehensively review the genetic contributions to IS and compare those findings to other well-described complex diseases such as Crohn’s disease, type 1 diabetes, psoriasis, and rheumatoid arthritis. We also summarize candidate gene studies and evaluate them in the context of possible disease aetiology. Finally, we provide study designs that apply emerging genomic technologies to this disease. Existing genetic data provide testable hypotheses regarding IS etiology, and also provide proof of principle for applying high-density genome-wide methods to finding susceptibility genes and disease modifiers.

    Key Words: Scoliosis, genetics, inheritance, genome-wide association.

  4. #4
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    Quote Originally Posted by AMom View Post
    Logically, you are right about the risk of progression and waiting until an ortho has seen my child. At the moment, however, I am thinking with my emotions.

    My husband just came home and reassured me our girls are doing what they are supposed to do--worry their parents. A hug goes a long way. I'm awfully glad I married him.

    My question about the odds of my second daughter having scoliosis wasn't fairly presented. Our children are adopted from different families. I was thinking about the small percentage of children with the disorder and wondering what the odds were against both of our girls having it.
    I'm sorry AMom. I think you did mention that at some point. I am on a new machine and did not port over my emails yet from the old one.

    The prevalence in any child is about 3%. Two children who are not related would be considered independent cases so I assume the approximate odds are 0.03 * 0.03 = 9 in 10,000 which is close to 1 in 1,000.
    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
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    Inital good news

    Quick Note: Haven't seen the ortho, but I just picked up the x-rays. They ped didn't request a lateral view, but the one she did ask for shows a fairly straight C-T-L spine (per my non-professional opinion). Have to wait to get the ortho's reading and opinion on whether he wants a side view.
    A Mom

  6. #6
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    only 11 degrees

    Saw the ortho today, he requested a side view of the lumbar area (said it looked okay) and measured my younger daughter’s thoracic curve at 11˚. He’d like to see her again in Mar 2014. Eleven degrees is tiny. I asked about her shoulders and he checked and said that it is positional and recommended yoga to strengthen the muscles. He said it isn’t necessary to address the back pain she has felt over the years, that if it exceeds the need for otc meds to let him know.

    A Mom

    Age: 12.11
    Riser: forgot to ask
    Tanner: 3
    Menstrual Cycle: 5 months
    Height: 60"
    Curve: T7-T12, right, 11 degrees

  7. #7
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    6 degrees

    Saw the ortho today; he requested both front and side view x-rays again. He measured the “curve” at 6˚, which doesn’t even count as scoliosis! He agreed her lordosis looked worse, and this time measured it: 84˚. He checked for spondylosis (dang, I was so excited about the non-scoliosis size that I can’t remember if he said that or spondylitis), but said she looked okay except that the lordosis is so much that the intervals between the first few lumbar vertebrae are almost vertical which can cause stress. (It looked to me as though L1-L2 has a bar of overgrowth and L3 is beginning to develop it on the outside edge of the vertebrae too.) He said he’d like to see her back in 6 months to check the lumbar region again.

    This time he wrote a script for PT.

    She has gained quite a bit of weight in the last five months and added an inch in height the last two months so she appears to be getting ready to start her final growth spurt. Based on her proportions I’m guessing she’ll be between 5’4” and 5’7”, but we’ll have to wait and see what happens over the next year and a half to find out how tall she’ll end up.

    Both girls are continuing as follows: WARM-UP: Walk/ Bike Ride, WORKOUT: BackStrong VARC (20 reps), MedX CTR (20 reps left & 20 reps right), and FINISHING: with an icepack for 15 minutes 1x per week. Though there was a change of 5 degrees, there is no way to know if the change is due to a spontaneous curve correction or the Targeted PT. Either way, they’ll keep up the workout until they reach a Risser of 5.

    Age: 13.09
    Riser: forgot to ask again!
    Tanner: 3
    Menstrual Cycle: 15 months
    Height: 61.0”
    Curve: Thoracic, right, 6 degrees

  8. #8
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    Did you know that an 85 degree lumbar lordosis is normal?

    Saw my youngest daughter's orthopedic surgeon this week and we were told her initial little, tiny curve (that corrected several years ago) is gone, nothing there at all--yea!

    He was not concerned about her chronic (sometimes very bad) pain, the substantial increase in her lumbar lordosis, or possible bone density concerns due to years of prednisone and other steroids necessary to allow her to breathe due to (the recently diagnosed genetic disorder) Alpha-1 Antitrypsin Deficiency.

    He did not look anything up even though we sent the name of the rare disorder to him ahead of the visit, declined the Alpha-1 literature, and when asked how bone loss may impact her spine he responded by repeating he didn't know anything about the disorder (deep breath/ remain calm) so I told him to consider similar bone loss due to other causes in similar scenarios. . . then gave up because he obviously had no interest in my child's well being. He ended the visit by telling us it was no longer necessary to see an ortho. We should have walked out on him, but my daughter asked how much worse her lordosis would get and I try to support my teen's participation in medical visits so I backed her up (he said she is done growing so it won't grow any more) and then asked how he knows it won't get worse since it has increased in size AFTER she quit growing--he responded by saying her lordosis is normal. My daughter asked a few more questions and then looked at me in disbelief and signed what she thought of his lack of respect and professionalism. All three of us walked out laughing (both daughters were there.) Both of my girls sign much better than I do!!!

    We will be scheduling an appointment with an endocrinologist who sees Alpha-1 and request a referral to an ortho who will work with her as necessary.

    Lordosis: 85
    Pelvic Incidence: 85
    Thoracic Kyphosis: 44

    Does anyone know what, if anything can be done to address lumbar lordosis?

    J Formos Med Assoc. 1992 Mar;91(3):329-33.
    Lumbar lordosis: normal adults.
    Lin RM1, Jou IM, Yu CY.
    Author information
    • 1Department of Orthopedics, College of Medicine, National Cheng Kung University, Tainan, Taiwan, R.O.C.
    Abstract
    Lumbar curvatures in 149 normal adults from the general population were studied. There were 76 men and 73 women with an average age of 50 years. The mean values of lumbar lordotic angle (LLA), lumbosacral angle (LSA) and sacral inclination angle (SIA) were 33.2 +/- 12.1 degrees, 11.4 +/- 4.7 degrees and 26.4 +/- 10 degrees, respectively. A high correlation was noted between LLA and SIA (r = 0.883, p = 0.0001). LLA is an ideal parameter for the evaluation of lumbar lordosis. The normal value of LLA can be defined as 20-45 degrees with a range of 1 SD. No significant differences were noted in these three angles between males and females in any age group (LLA, p = 0.647; LSA, p = 0.80; SLA, p = 0.189). Also, X-ray findings indicated there were no significant differences between these three angles in spondylotic spines and those spines with a normal appearance from X-ray finding. The average LLA increased with age. Significant lumbar lordotic angle differences were noted between those patients less than 35 years of age and those greater than 60 years, as well as in the 35-60 age group and the greater than 60 age group (p = 0.0056).
    PMID:
    1354697
    [PubMed - indexed for MEDLINE]

  9. #9
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    So unfortunate that the doctor feels he can treat his patients like that. We teach our children to respect adults and then the adults act bad. We as patients wait for appointments and value time spent with the doctor and maybe we should walk out when treated badly.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  10. #10
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    Much to my surprise, I have found that some physicians actually don't like published research! I had a horrible case of thryoiditis last year. We went to the endocrinologist in town that was rated very highly by a local magazine. My husband always goes to appointments with me. My disease had a unique presentation and we brought up a peer reviewed article that suggested a line of care that he didn't mention. His reaction was a VERY sarcastic: "pfft, re-surch. So overblown!" My husband and I just looked at each other, got up and walked out. He chased us up until the waiting room, trying to make excuses, then he stopped when we opened the door to the waiting room.

    After teaching in a medical school for five years, I know what an integral component peer reviewed research is to their education. This attitude is very surprising to me. I question how these physicians are meeting their CME requirements if they are not keeping up with their society's work.
    "The plural of anecdote is not data" --Frank Kotsonis

    Ph.D. in Bone Biology
    Harrington rod and Leuke sublaminar wires 2/1986, fused T4 to T12.
    First revision 3/1987 fused pseudoarthrosis, placed CD instrumentation from T10-T12.
    CD instrumentation removal 10/97 following breakage.
    Leuke wire removal 4/99.
    Salvage surgery; Harrington removal 1/2000, fused to L2.
    Ruptured disc, fusion extension to L4 3/2016.
    Surgeons: David Bradford, Francois Denis, Mike Lagrone

  11. #11
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    Normal lordosis is 40 to 60 degrees.

    Excess lordosis can be corrected much like scoliosis, with spinal fusion and instrumentation, though I think it always (or almost always) involves osteotomies.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  12. #12
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    lordosis questions

    Quote Originally Posted by LindaRacine View Post
    Normal lordosis is 40 to 60 degrees.

    Excess lordosis can be corrected much like scoliosis, with spinal fusion and instrumentation, though I think it always (or almost always) involves osteotomies.

    --Linda
    Linda,

    If normal lordosis ranges from 40 to 60 degrees, does this mean 85 degrees of lordosis is minor? I ask because 25 degrees beyond "normal" in scoliosis is considered to be a minor curve.

    Are ranges provided for lordosis as they are for scoliosis?

    I did a cursory review of "osteotomies" and the ones I saw referenced correcting flat back/ increasing lordosis and kyphosis. So I am guessing this means that the procedure would be similar, except the wedge/ segment removal would be the opposite of what is shown for those procedures???

    Since her breathing is under control, we have been taking advantage of her good health to increase aerobic capacity and reduce the significant weight she gained during the last two years of struggling to breath at her high school. Even if 85 degrees is not considered to be minor, I am guessing a surgeon will want her to remove another 20lbs and be above 1000 ml on the spirometer (she has improved but her current level is "best of 3" = 1k ml). Her height is 5'1", weight is 166lbs, age is 16, and dx is Alpha-1 (MZ) symptomatic carrier--her symptoms are the same or worse than most Alpha-1 (ZZ) of her age. We do not know if her bone density levels have been negatively impact by meds.

    Can you share some names of reputable orthos who have experience with this procedure?

    Thank you.

    A Mom

  13. #13
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    thank you for your empathy

    Quote Originally Posted by jackieg412 View Post
    So unfortunate that the doctor feels he can treat his patients like that. We teach our children to respect adults and then the adults act bad. We as patients wait for appointments and value time spent with the doctor and maybe we should walk out when treated badly.
    It is so very frustrating.

    My girls get along very with their long-standing physicians.

    I probably shouldn't admit this, but I have made no effort to stop their game of getting "new to them" doctors to 1) smile, 2) stay on point, 3) speak directly to THEM, and 4) answer their questions.

    Before anyone thinks they are rude teenagers, they are generally very good about not signing in front of non-signers and are discrete if they find it necessary to do so.

    Thank you for your empathy.

  14. #14
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    Quote Originally Posted by Prfbones View Post
    Much to my surprise, I have found that some physicians actually don't like published research! I had a horrible case of thryoiditis last year. We went to the endocrinologist in town that was rated very highly by a local magazine. My husband always goes to appointments with me. My disease had a unique presentation and we brought up a peer reviewed article that suggested a line of care that he didn't mention. His reaction was a VERY sarcastic: "pfft, re-surch. So overblown!" My husband and I just looked at each other, got up and walked out. He chased us up until the waiting room, trying to make excuses, then he stopped when we opened the door to the waiting room.

    After teaching in a medical school for five years, I know what an integral component peer reviewed research is to their education. This attitude is very surprising to me. I question how these physicians are meeting their CME requirements if they are not keeping up with their society's work.
    I always attend their medical visits with them, just as your husband does with you, so I can prompt them if they forget a question when overwhelmed by a new dx thrown out-of-the-blue or are feeling frustrated by non-responses. We have brought in peer-reviewed literature in the past, but this time it was an informational handout created for physicians including contact info and siting research to help them understand the rare disorder they are seeing at this moment because no one can be expected to know everything.

    We understand curtesy and act accordingly by informing the office when scheduling an appointment of the rare dx, offering to send literature along with lab reports & images, hand carrying same in case there was a communication error, prioritizing our questions, keeping the list short, & providing the doctor with a copy of the list too. It would be nice if we were treated with the same curtesy.

    I am sorry that happened to you. You both made your point without causing a scene. Sometimes battles aren't worth the fight--and it is best for all if you look for another doctor who will work with you rather than belittle your efforts.

  15. #15
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    Quote Originally Posted by AMom View Post
    Linda,

    If normal lordosis ranges from 40 to 60 degrees, does this mean 85 degrees of lordosis is minor? I ask because 25 degrees beyond "normal" in scoliosis is considered to be a minor curve.

    Are ranges provided for lordosis as they are for scoliosis?

    I did a cursory review of "osteotomies" and the ones I saw referenced correcting flat back/ increasing lordosis and kyphosis. So I am guessing this means that the procedure would be similar, except the wedge/ segment removal would be the opposite of what is shown for those procedures???

    Since her breathing is under control, we have been taking advantage of her good health to increase aerobic capacity and reduce the significant weight she gained during the last two years of struggling to breath at her high school. Even if 85 degrees is not considered to be minor, I am guessing a surgeon will want her to remove another 20lbs and be above 1000 ml on the spirometer (she has improved but her current level is "best of 3" = 1k ml). Her height is 5'1", weight is 166lbs, age is 16, and dx is Alpha-1 (MZ) symptomatic carrier--her symptoms are the same or worse than most Alpha-1 (ZZ) of her age. We do not know if her bone density levels have been negatively impact by meds.

    Can you share some names of reputable orthos who have experience with this procedure?

    Thank you.

    A Mom
    Hi...

    An 85 degree lordosis might be significant. There are some special considerations, however, that might make hyperlordosis appropriate.

    I'm not sure I would trust most pediatric scoliosis specialists to have enough experience in treating a sagittal plane deformity (other than Scheurmann's). Where do you live?

    I think you're exactly right about the osteotomy needing to be the reverse of what you're probably seeing on the internet, though it's a lot more complex. To reduce lordosis, the anterior column would need to be shortened. When the anterior column is shortened, the posterior column would be lengthened. Here's an article that discusses the surgical correction of hyperlordosis. Note that it's specifically discussing hyperlordosis of neuromuscular origin. Hopefully your daughter won't require surgery.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

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