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Thread: Back from the ortho

  1. #1
    Join Date
    Feb 2005
    Location
    Virginia
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    48

    Unhappy Back from the ortho

    Well, the news is not good. Ian has infantile scoliosis. His curve is 37 degrees. We have to take him to be fitted for a brace which he will have to wear 24/7 with the only exception being for baths. We also have to take him for an MRI which they have to do while he is under general anesthesia to look for possible congenital issues. I am just worried sick about that. I also can't imagine how being braced is going to affect his development with learning to crawl, walk and all of his other milestones. Not to mention that bracing is no gaurantee of a successful outcome. My poor baby...I just broke down and cried when we got the news. It will probably be some time before we can get the MRI done as they are backlogged right now.

    So, here are my questions: How long do you think he'll have to wear the brace? Is bracing usually successful in infants? How likely is it that there is something congenital going on? How worried should I be having a sixth month old go under anesthesia?

    Please, any other advice, input, words of wisdom would be greatly appreciated.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
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    6,797
    Hi Iansmommy...

    Good questions for Ian's specialist. I'm GUESSING that these kids have curves that either start resolving or progressing fairly rapidly. If the curve starts to resolve, they'll almost certainly take him out of the brace. If the curve starts progressing, they'll have to perform surgery. You'll know more after the MRI.

    Good luck.

    Regards,
    Linda

  3. #3
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    Mar 2004
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    1,140
    Jennifer,

    Wasn't your doctor able to tell you whether there is something structurally wrong with the vertebrae or ribs ? At the first meeting with our orthopedist, he was able to tell me that my daughter had idiopathic. If there is something structurally wrong with the vertebrae or ribs, it's quite obvious. Did you find out what the RVAD is ?

    Although I'm sure there are cases where braces are effective for children under the age of one, I've come across a lot of parents whose children's curves continue to progress despite bracing - It's VERY VERY sad. These poor children are victims of a system gone wrong. When an infant has progressive scoliosis it can progress at an alarming rate. It's highly likely that by choosing the bracing route, you're just setting yourself up for one MASSIVE disappointment. Surgery IS preventable in infantile idiopathic scoliosis through casting whether your son has a rigid or flexible curve. I've read the entire article written by Ventura et. al (one of the links that Linda gave you), all the children were treated with serial casts - I believe with the exception of one, whose curve progressed during adolescence - ALL curves RESOLVED with casting despite being progressive.




    Celia

  4. #4
    Join Date
    Feb 2005
    Location
    Virginia
    Posts
    48
    Celia, I sent you a pm asking about the casting. This guy didn't mention it at all and didn't give me any other information other than what I posted. Do you know of any specialists that do casting that I could call? I live in Virginia, but would be willing to go where ever I need to in order to get the best treatment as possible. Here is my email address if you want to email me: Noellesmommy@comcast.net. Thanks for any help you can give to me.

  5. #5
    Join Date
    Mar 2004
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    Jennifer,

    Talk to your doctor about casting. If he refuses, here is a list of doctors that I'm aware of ( I'm sure there are others ) that apply serial casts:



    Royal National Orthopaedic Hospital at Stanmore, Middlesex. England
    Contact person: Susan Lister, Senior Nurse,
    Spinal Deformity Unit
    0208 909 5328 bleep 704
    General Manager 0208 909 5587
    http://www.rnoh.nhs.uk/
    All doctors at this hospital routinely cast children





    John E. Lonstein, MD
    Twin Cities Spine Center
    (612) 775-6200
    913 E 26th St #600
    Minneapolis MN 55404-4515
    http://www.tcspine.com/default.asp
    Adolescent, Adult Scoliosis, Juvenile/Infantile





    Charles E. Johnston II, MD
    Texas Scottish Rite Hospital
    214-559-7559
    2222 Welborn St
    Dallas TX 75219-3993
    http://www.tsrhc.org/m_orthopedicsstaff.cfm - johnston
    Adolescent, Juvenile/Infantile





    James O. Sanders, MD
    Shriners Hospitals for Children
    814-875-8700
    1645 W. 8th Street
    Erie PA 16505
    http://www.shrinershq.org/Hospitals/Erie/
    Adolescent, Juvenile/Infantile





    Michelle Prince, MD
    Children's Hospial of Austin, Texas
    (512) 478-8116
    Fax: (512) 478-9368
    1410 N IH-35, Ste 300
    Austin, TX 78701
    http://www.childrenshospital.com/





    Cincinnati Children's Hospital Medical Center
    513-636-4454
    First floor
    3333 Burnet Avenue
    ML 2017
    Cincinnati, OH 45229
    http://www.cincinnatichildrens.org/s.../o/orthopedic/





    Ronald Moskovich, MD
    Hospital for Joint Diseases
    (212) 598-6622
    301 E. 17th Street
    New York NY 10003-3804
    http://www.moskovich.com/
    Adolescent, Adult Scoliosis, Juvenile/Infantile





    The Hospital for Sick Children

    Division of Orthopaedic Surgery
    Phone: (416) 813-6439
    Fax: (416) 813-6414
    S107 - 555 University Avenue
    Toronto, Ontario
    CANADA M5G 1X8
    http://www.sickkids.ca/orthopaedicsurgery/





    Douglas M Hedden, MD, FRCSC
    Stollery Children's Hospital
    (780) 407-6870
    8440 - 112 Street
    Edmonton, Alberta
    CANADA T6G 2B7
    http://www.capitalhealth.ca/Hospital...al/default.htm





    Jacques D'Astous, M.D., FRCS(C)
    Intermountain Shriners Hospital
    801-536-3500
    Fairfax Road at Virginia St.
    Salt Lake City, UT 84103
    http://www.shrinershq.org/Hospitals/Salt_Lake_City/





    Linda P. D'Andrea, MD

    Brandywine Orthopaedics

    610-792-9292

    600 Creekside Drive, Suite 611

    Pottstown, PA 19464

    http://www.brandywineortho.com/



    1 day a week, Dr. D’Andrea is at the Shriners in Philadelphia

    Shriners Hospital

    (215) 430-4026

    3551 N Broad Street

    Philadelphia PA 19140-4105

    http://www.shrinershq.org/Hospitals/Philadelphia/





    Karl E. Rathjen, MD

    Texas Scottish Rite Hospital

    (214) 559-7555

    Department of Orthpaedics

    2222 Welborn Street

    Dallas TX 75219-3993

    Adolescent, Juvenile/Infantile

    http://www.tsrhc.org/





    Peter F. Sturm, MD

    Shriner's Hospital

    (773) 385-5500

    2211 N. Oak Park Ave

    Chicago IL 60707-3392

    Adolescent, Juvenile/Infantile

    http://www.shrinershq.org/Hospitals/Chicago/





    J. Scott Doyle, M.D

    UAB Orthopaedics

    510 20th Street South

    Birmingham, AL 35294

    205.975.2663

    http://www.ortho.uab.edu/Specialties.../Surgeons.html





    Douglas G. Armstrong, MD

    Rainbow Babies and Children's Hospital

    (216) 844-7613

    Dept of Pediatric Orthopaedic Surgery

    11100 Euclid Ave

    Cleveland OH 44106

    Adolescent, Juvenile/Infantile

    http://www.uhhospitals.org/rainbowch...6/Default.aspx





    Michael Timothy Hresko, MD

    Children's Hospital Boston

    (617) 355-4849

    300 Longwood Ave

    Boston MA 02115

    Adolescent, Juvenile/Infantile

    http://www.childrenshospital.org/cli...geS1171P0.html





    Shyam Kishan, MD

    Loma Linda University Medical Center

    Department of Orthopaedic Surgery

    Faculty Medical Offices

    11370 Anderson Street, Suite 1500

    Loma Linda, CA 92354

    (909) 558-2808 (for appointments)

    http://www.llu.edu/eastcampus/ortho/



    Mark A. Erickson, MD

    Orthopaedic Center

    The Children's Hospital

    1056 East 19th Avenue

    Denver, CO 80218

    (303) 861-6615

    http://www.thechildrenshospital.org/...x?doctorID=524





    Charles R. d'Amato, MD,FRCSC

    Shriners Hospital for Children

    (503) 221-3424

    3101 SW Sam Jackson Park Rd.

    Portland OR 97239-3009

    http://www.shrinershq.org/Hospitals/Portland/





    Joseph G. Khoury, MD

    The Children's Hospital of Alabama

    ACC 316

    1600 7th Ave S

    Birmingham, AL 35233-1711

    (205) 939-9100

    http://www.chsys.org




    Good Luck !


    Celia
    Last edited by Celia; 06-26-2007 at 09:00 PM.

  6. #6
    Join Date
    Feb 2005
    Location
    Virginia
    Posts
    48
    Thanks Celia! Shriner's in Erie would be the closest I think. I also am talking with someone at UVA right now who says he does casting. He says that he doesn't recommend it (or bracing for that matter) until the patient is between 12-18 mos! The ortho I saw yesterday wants Ian braced right away. Ugh. I hope I can figure this out and make the right decision.

  7. #7
    Join Date
    Mar 2004
    Posts
    1,140
    Jennifer,

    Contact Dr. Sanders ASAP. Don't wait ! If you wait until your baby is 10 or 12 months old, his curve could be in the 90's.




    Celia

  8. #8
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    Feb 2005
    Location
    Virginia
    Posts
    48
    Yeah, my husband thought that sounded weird to wait too. I will start calling around. My husband really wants me to talk to our current doctor and see what he says.

  9. #9
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    Feb 2005
    Location
    Virginia
    Posts
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    Celia, I just left a message with the staff at Shriners. I will let you know what they say. Thanks for your help.

  10. #10
    Join Date
    Mar 2004
    Posts
    1,140
    Jennifer,

    When you phone Shriner's, you should ask to speak to the care
    co-ordinator for Dr. Sanders.

    If you need help with transportation there are various organizations which provide the service for free :

    Angel Flight America
    http://www.angelflightamerica.org

    Any Baby Can
    http://www.abcaus.org

    Miracle Flights for Kids
    http://www.miracleflights.org

    Northwest Airlines
    http://www.nwa.com/corpinfo/aircares...kidcares.shtml

    PatientTravel.org Wings for Children
    http://www.wingsforchildren.org/pilot.htm




    Regards,


    Celia

  11. #11
    Join Date
    Feb 2005
    Location
    Virginia
    Posts
    48
    Celia, thanks so much! I have an appt set up for the 31st of March, but they may try to get me in sooner after they talk with Dr. Sanders. The Care coordinator was not in today, but she is supposed to call me back.

    Thanks for the info on the flights.

    This is SO stressful.

  12. #12
    Join Date
    Mar 2004
    Posts
    1,140
    Hi Jennifer,


    GREAT NEWS !!!

    When you talk to the care co-ordinator make sure that she knows you're coming from out of town and if Dr. Sanders thinks your son would be a good candidate for casting that you would like to have it done the following day or whatever ( just so you won't have to be going back and forth ). My daughter was casted before her mri - in fact she had the cast on when the mri was done.



    Celia

  13. #13
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    Feb 2005
    Location
    Virginia
    Posts
    48
    That is good to know Celia. I wondered if I should follow through with our MRI here or if they would do it there. I hope I can speak with the coordinator tomorrow...she is not in today.

    Did they put your daughter to sleep to do the casting? What does the cast look like and how do you manage baths with that on? Was it uncomfortable for her?

    I can't tell you how much I appreciate your advice. Thank goodness for the internet or I would be getting that brace for Ian without knowing any better.

  14. #14
    Join Date
    Mar 2004
    Posts
    1,140
    Jennifer,

    Once you speak to the care co-ordinator you'll have a better idea of what to expect with MRI's and such. There is a picture of Deirdre in her cast in the "NON OPERATIVE" section. The casts applied by Dr. Sanders are very similar. He has cut-outs in the chest area and also some in the back. From what I hear, he has had very good success with casting.

    Casts are normally applied under general anesthesia. Dr. Sanders will have to make that decision when he sees your son. I'm hoping your son has idiopathic, since your doctor is prescribing a brace. Normally they don't prescribe braces for congenital.

    To answer some of your questions: there are no restrictions to movement in the cast. Full baths are out of the question - daily sponge baths are the norm. Children adapt very quickly to the casts - some learn to walk while wearing a cast. Because your son is so young and his curve is below 40 degrees, treatment in casts may last less than one year ! Did you find out if his curve is flexible or rigid ?




    Celia

  15. #15
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    Feb 2005
    Location
    Virginia
    Posts
    48
    No, he didn't say if it was flexible or rigid. The guy didn't tell me anything! I meant to ask, but I was so upset when he told me the angle number everything else went out of my head.

    They were supposed to call me today with the MRI information, but as of yet I still haven't heard from the ortho. I was hoping that I could talk to him when they called me today to schedule his MRI. Do they do MRI's even if they think it is idiopathic. I thought maybe they were doing the MRI because it could be congenital.

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