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Thread: 13 year old mildly autistic just diagnosed/what to expect?

  1. #1
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    13 year old mildly autistic just diagnosed/what to expect?

    I am completely new to forums so I hope that I am doing this right. I have a 13 year old daughter who was just diagnosed with scoliosis. She has 3 curves. 28 degrees thoracic to the left, 21 degrees thoracic to the right and 43 degrees lumbar to the left. I am feeling guilty that I did not spot this until I received a note home from the school after a screening that there might be a curve. Well apparently there was - 3 of them.

    My last experience with scoliosis was in the late 70's watching my sister and mother fight over my sister not wearing her brace. She really struggled with that thing. She did not always wear it as she should and she now admits to having back pain and wishing that she would have been better about using it.

    So now here we are today and my daughter is going to have to go through this. Just a brief background on my daughter. She was the baby that I thought I was never going to have. She was a foster baby that we brought home at 2 months and she was 2 months premature. She was tiny!!!! We were fortunate to be able to adopt her.

    We discovered that she was mildly autistic at the age of 4. She has terrible exzema and breaks out in a rash with the slightest of heat. I am nervous that she will have to wear a brace of which her pediatrician does not think she will tolerate well. She has terrible hygiene habits. Many bowel accidents that she needs help with. Not sure how a brace will work with all of this.

    I have an appointment for her on June 1st with Dr. Aminian at CHOC Orthopedic Spine Institute in Orange, Ca. My pediatrician has given him very high praises. Has anyone heard of him.

    While waiting for the appointment I think that I have completely become obssessed and have read every article on scoliosis that I can find. I see a lot information talking about 2 curves but not a lot of information on 3 curves.

    I am hoping that someone can give me an insight on what to expect on our first visit. Does anyone have experience with an autistic child wearing a brace that has sensory issues.

    Any information, advice or just calming words would be greatly appreciated. I am one nervous mom right now and trying very hard to keep it in as to not upset my daughter in any way.
    Last edited by 4stoffels; 05-16-2012 at 12:16 PM.

  2. #2
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    Hi and welcome to the forum. I cannot help you except to say that I have two sensory issue kids ; one of which has high functioning autism and there is no way that either one of them could tolerate a brace. They are both very lucky that neither needed braces as that would not have worked . They both have skin rashes and cannot tolerate the heat .

    I wish you well
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
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    Quote Originally Posted by 4stoffels View Post
    I am completely new to forums so I hope that I am doing this right. I have a 13 year old daughter who was just diagnosed with scoliosis. She has 3 curves. 28 degrees thoracic to the left, 21 degrees thoracic to the right and 43 degrees lumbar to the left. I am feeling guilty that I did not spot this until I received a note home from the school after a screening that there might be a curve. Well apparently there was - 3 of them.

    My last experience with scoliosis was in the late 70's watching my sister and mother fight over my sister not wearing her brace. She really struggled with that thing. She did not always wear it as she should and she now admits to having back pain and wishing that she would have been better about using it.

    So now here we are today and my daughter is going to have to go through this. Just a brief background on my daughter. She was the baby that I thought I was never going to have. She was a foster baby that we brought home at 2 months and she was 2 months premature. She was tiny!!!! We were fortunate to be able to adopt her.

    We discovered that she was mildly autistic at the age of 4. She has terrible exzema and breaks out in a rash with the slightest of heat. I am nervous that she will have to wear a brace of which her pediatrician does not think she will tolerate well. She has terrible hygiene habits. Many bowel accidents that she needs help with. Not sure how a brace will work with all of this.

    I have an appointment for her on June 1st with Dr. Aminian at CHOC Orthopedic Spine Institute in Orange, Ca. My pediatrician has given him very high praises. Has anyone heard of him.

    While waiting for the appointment I think that I have completely become obssessed and have read every article on scoliosis that I can find. I see a lot information talking about 2 curves but not a lot of information on 3 curves.

    I am hoping that someone can give me an insight on what to expect on our first visit. Does anyone have experience with an autistic child wearing a brace that has sensory issues.

    Any information, advice or just calming words would be greatly appreciated. I am one nervous mom right now and trying very hard to keep it in as to not upset my daughter in any way.
    Welcome to NSF,

    I know it has been awhile, but congratulations on your adoption! I am so happy for your family.

    Try not to feel guilty about not noticing your daughter’s curves. First, it wouldn’t have made a difference in the outcome if you had noticed the curves earlier. Next, you can’t see through her skin, so unless she has a lot of rotation you wouldn’t have noticed a curve smaller than 30°. For the lumbar curve, unless you are looking for it, it would take time to notice its presence. If the ortho’s could do what you are expecting yourself to do then our kids wouldn’t need to be x-rayed so often! You know about her scoliosis now and have an appointment scheduled, so you are on the right path. And finally, if your sister had worn her brace more often or for longer periods of time it would not have REDUCED the size of the curve and therefore it is unlikely it would have made her more comfortable later in life.

    I don’t know anything about Dr. Aminian, but you brought up some good points to ask him. I would recommend making a list of your concerns regarding A) scoliosis and B) autism. Then, I would re-sequence them so the most important questions are listed first under each column. Another parent recently asked general questions about visiting an ortho and received advice I would have liked to have had at my daughter’s first appointment. I bet Pooka1 would be able to tell you how to locate the thread.

    Other than that, I am going to laundry list my thoughts below.
    • Sensory issues can be tough to deal with, especially if the professionals don’t work with these types of concerns on a regular basis. (There are some folks who suggest the kids “get over it” and others who disregard what they do not understand.)
    • The compression of the brace may actually be calming, though any pressure points may undermine that benefit.
    • Does she have eczema on her torso? If she does, that may mean a brace is contraindicated.
    • You live in California, so you might want to go to your local FRC and ask questions. They can direct you to support groups and (as far as I know) each center has parent-to-parent connections as well. You can ask to be connected to a parent of a child with autism and scoliosis so you can get some experienced feedback on the ups and downs of various treatments. (You have probably already done this, but just in case here is their number 800-974-5553 or 909-890-4788. I haven’t been on it, but was also given their web site: www.esfrn.org)
    • A brace will probably add some challenges to her toileting concerns. You may want to talk with her behaviorist about this issue.
    • I am guessing your daughter has an IEP or a 504. These are issues you may also want to discuss with your daughter’s teacher and OT (if she has one.) Depending on treatment, this may impact your daughter’s services. –Probably not much, but she may require additional support.
    • Her RC service probably won’t change. www.http://www.inlandrc.org/
    • You can contact CCS www.dhcs.ca.gov/services/ccs or 951-358-5401 for assistance with insurance coverage if needed.

    You are welcome to PM me.

    Best wishes.

    A Mom
    Last edited by AMom; 05-16-2012 at 05:10 PM. Reason: added contact info

  4. #4
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    Unhappy

    I
    Quote Originally Posted by AMom View Post
    Welcome to NSF,

    I know it has been awhile, but congratulations on your adoption! I am so happy for your family.

    Try not to feel guilty about not noticing your daughter’s curves. First, it wouldn’t have made a difference in the outcome if you had noticed the curves earlier. Next, you can’t see through her skin, so unless she has a lot of rotation you wouldn’t have noticed a curve smaller than 30°. For the lumbar curve, unless you are looking for it, it would take time to notice its presence. If the ortho’s could do what you are expecting yourself to do then our kids wouldn’t need to be x-rayed so often! You know about her scoliosis now and have an appointment scheduled, so you are on the right path. And finally, if your sister had worn her brace more often or for longer periods of time it would not have REDUCED the size of the curve and therefore it is unlikely it would have made her more comfortable later in life.

    I don’t know anything about Dr. Aminian, but you brought up some good points to ask him. I would recommend making a list of your concerns regarding A) scoliosis and B) autism. Then, I would re-sequence them so the most important questions are listed first under each column. Another parent recently asked general questions about visiting an ortho and received advice I would have liked to have had at my daughter’s first appointment. I bet Pooka1 would be able to tell you how to locate the thread.

    Other than that, I am going to laundry list my thoughts below.
    • Sensory issues can be tough to deal with, especially if the professionals don’t work with these types of concerns on a regular basis. (There are some folks who suggest the kids “get over it” and others who disregard what they do not understand.)
    • The compression of the brace may actually be calming, though any pressure points may undermine that benefit.
    • Does she have eczema on her torso? If she does, that may mean a brace is contraindicated.
    • You live in California, so you might want to go to your local FRC and ask questions. They can direct you to support groups and (as far as I know) each center has parent-to-parent connections as well. You can ask to be connected to a parent of a child with autism and scoliosis so you can get some experienced feedback on the ups and downs of various treatments. (You have probably already done this, but just in case here is their number 800-974-5553 or 909-890-4788. I haven’t been on it, but was also given their web site: www.esfrn.org)
    • A brace will probably add some challenges to her toileting concerns. You may want to talk with her behaviorist about this issue.
    • I am guessing your daughter has an IEP or a 504. These are issues you may also want to discuss with your daughter’s teacher and OT (if she has one.) Depending on treatment, this may impact your daughter’s services. –Probably not much, but she may require additional support.
    • Her RC service probably won’t change. www.http://www.inlandrc.org/
    • You can contact CCS www.dhcs.ca.gov/services/ccs or 951-358-5401 for assistance with insurance coverage if needed.

    You are welcome to PM me.
    Best wishes.

    A Mom

    Thank you for your response. Your laundry list is very well thought out. I am just very anxious to get to her first ortho appointment to get the ball rolling and to determine what is going to be done for her.

    I briefly spoke to a nurse in the office and informed her of my daughter's autism and she did say that they work with a lot of special needs children so I am hoping that this Dr. will listen to my concerns. She gets hot itchy rashes all over her body when it is hot. I was thinking the same thing about the compression of the brace being calming for her but I don't think that will be the case knowing her.

    I know you say not to feel guilty even my dad said not too feel guilty but now that we have had her fist xrays and were told the degree of her curves I look at her back and can see the rib hump and the very uneven waist line/hips. It just makes me wonder why I did not notice it before since I spend so much time with her due to hygiene issues. It seems so apparent now.

    She is 13 and started her period at the age of 11 so I am wondering if that makes where she is at better in regards to the progression of curves. I have read that lumbar curves can be operated on when they are over 40 degrees - is this true? The thought of that scares me too. She had a oral mouth procedure done one time that should have been a quick 1 day out patient type of procedure which turned in to a 2 day stay in hospital due to an infection of her tongue/mouth.

    I know that I need to just stop worrying and whatever will be will be... but hard to do with the unknowns.
    Last edited by 4stoffels; 05-16-2012 at 09:38 PM.

  5. #5
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    Hi and welcome.

    The standard of care is to consider bracing curves between 25* to 40*. Your daughter's lumbar curve is just outside that range. Though you are considering the possibility of your daughter wearing a brace, that may not even be on the table. Braces are not thought to work above 40* apparently.

    So given your daughter's other issues, combined with her major curve being larger than 40*, the surgeon may not consider bracing.

    There are a few testimonials on the group about surgeons lowering the surgical trigger angle to below 50* for the explicit reason of saving levels in the lumbar. If operating earlier can save levels, they might suggest that. If it won't save levels then they might delay. Only a surgeon can make that call. You may want more than one opinion also.

    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."

  6. #6
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    Hi and welcome,

    I have heard of Dr. Aminian but have no personal experience with him. He is on the list of physicians on the VBS site who perform that procedure - and the few things I have heard about him have been positive. The other scoliosis specialist I hear lots of wonderful things about in California is Dr. Peter Newton in San Diego.

    Best of luck to you and your daughter.
    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/

  7. #7
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    Quote Originally Posted by mariaf View Post
    Hi and welcome,

    I have heard of Dr. Aminian but have no personal experience with him. He is on the list of physicians on the VBS site who perform that procedure - and the few things I have heard about him have been positive. The other scoliosis specialist I hear lots of wonderful things about in California is Dr. Peter Newton in San Diego.

    Best of luck to you and your daughter.

    Would you mind giving the web address to the site that you are referring to so I can take a look at it. I have read about VBS and would like to educate myself a little more about it.

  8. #8
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    This is new to me, where do I start?

    Pooka1,

    Thank you for finding the thread. I have cobbled several messages from different parents together below. (Dessy's mom, leahdragonfly, ARodsMom, mariaf, Resilience, & AMom)



    Dear 4stoffels,

    You have come to the right place for support and information.

    My advice would be to find a doctor you trust (you may want to get more than one opinion) and take things one step at a time and one day at a time. We are here to answer any questions that arise either now or after your appointment.

    Don’t let the term orthopedic ‘surgeon’ scare you – they also prescribe braces, they don’t just perform surgery.

    I would recommend asking her physician what YOU want to know.

    On important medical visits, I usually write a list of questions and then group & re-sequence them placing the most important ones first. (I have found my daughter’s doctors like having a copy of the list. On my copy, I leave room to write their answers because I may not remember them once I walk out the door.)

    Dx: I want to know what type of scoliosis she has (idiopathic or a known cause) the degree, direction, and rotation of the curve/s.

    Details: I ask the doctor to show me how he reads the x-rays each time.

    Current Treatment: I want to know what treatment/s are available, what the physician recommends, why s/he recommends that particular treatment, and the expected outcome of the treatment. I also want to know where my daughter’s case falls within the expected the range of results for the various treatments.

    Bracing: If he recommended bracing, I want to know who he recommends, how much experience the orthotics guy has, and who we contact (ortho or the guy that fitted her) if we have questions or problems.

    Prognosis: I state my daughter has/ has not started her menses, ask about the impact of growth and maturation on curve progression, and how often we need to return for follow up visits. I then ask what would happen if we did nothing. (In other words, based on her particular data, how likely was it that her curve would progress?)

    Long Range Treatment: I want to know what he is looking for while he was “watching and waiting” and what the next step will be if/ when he sees it. For this question, I am seeking general knowledge—I realize he will not be able to tell me exactly what he might do unless/ until he sees a change.

    Reports: I request and retain copies. (Sometimes they are free; sometimes I have to pay for copies)

    X-rays: I request and retain copies. (Same for other tests such as an MRI, if needed) —There is frequently a charge for these copies

    Reading: I ask if he would recommend reading material so I would better understand the disorder and treatment recommended.

    I would also ask your daughter what she wants to know about scoliosis. I am sure she may have fears or questions that she may be reluctant to ask, but if you let her know you will answer any question, she may feel more comfortable.

    And finally, I asked if there was anything he, as the professional, thought I should know that I hadn’t asked him.

    I agree with the wise advice above. I also am not familiar with the doctor you mention but would recommend that you take your daughter to an Orthopedic Surgeon who specializes in Scoliosis. It is an evolving field, especially in regard to young children.

    Also, let me repeat Maria's comment that although a Surgeon, these specialists routinely treat patients with Scoli along the journey, the goal of bracing being to avoid surgery. Initially, my husband was very concerned that we were seeing a Surgeon.

    You are in the shock stage of this diagnosis. Any emotion you or your daughter is feeling is normal. Why me/her, anger, sadness, overwhelmed etc. Once you have a plan in place that you feel ok with, it will get a bit better.

    Good luck, you've come to the right place.

    -------------------------------------
    I think I will start a binder for these appointments and take the tape recorder as well. (Some doctors are not comfortable with a recorder, so you may want to consider bringing a pen along with your list of questions.)

    Making a file for medical reports, treatments, tests, insurance/ co-payments, referrals, and medications makes me feel as though I have control over one part of our lives. When we go for a second opinion, it is convenient to bring a copy so the professional can look over the documents and discuss their opinion right then. Doing so allows me to ask questions whereas reading a report later doesn’t allow for that interaction.

    Best of luck to you and your daughter and please keep us posted!

  9. #9
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    May 2012
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    Quote Originally Posted by AMom View Post
    Pooka1,

    Thank you for finding the thread. I have cobbled several messages from different parents together below. (Dessy's mom, leahdragonfly, ARodsMom, mariaf, Resilience, & AMom)



    Dear 4stoffels,

    You have come to the right place for support and information.

    My advice would be to find a doctor you trust (you may want to get more than one opinion) and take things one step at a time and one day at a time. We are here to answer any questions that arise either now or after your appointment.

    Don’t let the term orthopedic ‘surgeon’ scare you – they also prescribe braces, they don’t just perform surgery.

    I would recommend asking her physician what YOU want to know.

    On important medical visits, I usually write a list of questions and then group & re-sequence them placing the most important ones first. (I have found my daughter’s doctors like having a copy of the list. On my copy, I leave room to write their answers because I may not remember them once I walk out the door.)

    Dx: I want to know what type of scoliosis she has (idiopathic or a known cause) the degree, direction, and rotation of the curve/s.

    Details: I ask the doctor to show me how he reads the x-rays each time.

    Current Treatment: I want to know what treatment/s are available, what the physician recommends, why s/he recommends that particular treatment, and the expected outcome of the treatment. I also want to know where my daughter’s case falls within the expected the range of results for the various treatments.

    Bracing: If he recommended bracing, I want to know who he recommends, how much experience the orthotics guy has, and who we contact (ortho or the guy that fitted her) if we have questions or problems.

    Prognosis: I state my daughter has/ has not started her menses, ask about the impact of growth and maturation on curve progression, and how often we need to return for follow up visits. I then ask what would happen if we did nothing. (In other words, based on her particular data, how likely was it that her curve would progress?)

    Long Range Treatment: I want to know what he is looking for while he was “watching and waiting” and what the next step will be if/ when he sees it. For this question, I am seeking general knowledge—I realize he will not be able to tell me exactly what he might do unless/ until he sees a change.

    Reports: I request and retain copies. (Sometimes they are free; sometimes I have to pay for copies)

    X-rays: I request and retain copies. (Same for other tests such as an MRI, if needed) —There is frequently a charge for these copies

    Reading: I ask if he would recommend reading material so I would better understand the disorder and treatment recommended.

    I would also ask your daughter what she wants to know about scoliosis. I am sure she may have fears or questions that she may be reluctant to ask, but if you let her know you will answer any question, she may feel more comfortable.

    And finally, I asked if there was anything he, as the professional, thought I should know that I hadn’t asked him.

    I agree with the wise advice above. I also am not familiar with the doctor you mention but would recommend that you take your daughter to an Orthopedic Surgeon who specializes in Scoliosis. It is an evolving field, especially in regard to young children.

    Also, let me repeat Maria's comment that although a Surgeon, these specialists routinely treat patients with Scoli along the journey, the goal of bracing being to avoid surgery. Initially, my husband was very concerned that we were seeing a Surgeon.

    You are in the shock stage of this diagnosis. Any emotion you or your daughter is feeling is normal. Why me/her, anger, sadness, overwhelmed etc. Once you have a plan in place that you feel ok with, it will get a bit better.

    Good luck, you've come to the right place.

    -------------------------------------
    I think I will start a binder for these appointments and take the tape recorder as well. (Some doctors are not comfortable with a recorder, so you may want to consider bringing a pen along with your list of questions.)

    Making a file for medical reports, treatments, tests, insurance/ co-payments, referrals, and medications makes me feel as though I have control over one part of our lives. When we go for a second opinion, it is convenient to bring a copy so the professional can look over the documents and discuss their opinion right then. Doing so allows me to ask questions whereas reading a report later doesn’t allow for that interaction.

    Best of luck to you and your daughter and please keep us posted!

    WOW! Thank you so much! This is some great information. It is almost the next best thing then some of you coming to the appointment with me I will keep you posted on the outcome of her first appointment. Thank you again!

  10. #10
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    Hi...

    I believe Dr. Aminian performs VBS surgery, as does David Skaggs at UCLA. While VBS is a surgical procedure, it might be the sort of thing your daughter needs. You can read about VBS here:

    http://www.vertebralstapling.com/Ver...ling_Page.html

    Regards,
    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
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  11. #11
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    Quote Originally Posted by LindaRacine View Post
    Hi...

    I believe Dr. Aminian performs VBS surgery, as does David Skaggs at UCLA. While VBS is a surgical procedure, it might be the sort of thing your daughter needs. You can read about VBS here:

    http://www.vertebralstapling.com/Ver...ling_Page.html

    Regards,
    Linda
    Thanks Linda - I will definately be bringing this up at our appointment if the Dr. does not.

  12. #12
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    Thanks, Linda.

    Stoffels - Now that you have the website info, I just wanted to let you know that I co-moderate that site with another mom - both of our children had VBS (my son 8 years ago) and are doing well. While I'm sure VBS is not the right choice for everyone, for some it has been a Godsend. It might very well be a good fit for your daughter. There is a complete list of surgeons who perform VBS on our website - Linda named 2 of them who are in California. When you visit www.vertebralstapling.com, you can get recommendations from dozens of parents.

    Just FYI, you will need to be approved to access the discussion forum and certain parts of the site. We do this to protect the privacy of our children and so that you can be sure (well as sure as one can be) that you are only sharing with other parents dealing with similar issues (i.e., scoliosis). We will, of course, be happy to approve your membership. Please go to the web site and sign up so that we can get you started - if you have any trouble at all or wish to ask any questions, please do not hesitate to e-mail me at mariaf305@yahoo.com and I'll be happy to assist you!
    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/

  13. #13
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    h
    Quote Originally Posted by mariaf View Post
    Thanks, Linda.

    Stoffels - Now that you have the website info, I just wanted to let you know that I co-moderate that site with another mom - both of our children had VBS (my son 8 years ago) and are doing well. While I'm sure VBS is not the right choice for everyone, for some it has been a Godsend. It might very well be a good fit for your daughter. There is a complete list of surgeons who perform VBS on our website - Linda named 2 of them who are in California. When you visit www.vertebralstapling.com, you can get recommendations from dozens of parents.

    Just FYI, you will need to be approved to access the discussion forum and certain parts of the site. We do this to protect the privacy of our children and so that you can be sure (well as sure as one can be) that you are only sharing with other parents dealing with similar issues (i.e., scoliosis). We will, of course, be happy to approve your membership. Please go to the web site and sign up so that we can get you started - if you have any trouble at all or wish to ask any questions, please do not hesitate to e-mail me at mariaf305@yahoo.com and I'll be happy to assist you!
    Thank you so much for your help. I just entered my information and am awaiting the approval now. From what I have read this would probably be a much better fit for my daughter. Glad to have more information to walk into the Drs. Office with and the Dr that we are seeing is definately on the list.

    Thanks again for your help.

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