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  • 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
    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
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

    Comment


    • #3
      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

      Canadian eh
      Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

      Comment


      • #4
        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.

        Comment


        • #5
          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, 09:00 PM.

          Canadian eh
          Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

          Comment


          • #6
            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.

            Comment


            • #7
              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

              Canadian eh
              Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

              Comment


              • #8
                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.

                Comment


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

                  Comment


                  • #10
                    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

                    Canadian eh
                    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

                    Comment


                    • #11
                      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.

                      Comment


                      • #12
                        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

                        Canadian eh
                        Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

                        Comment


                        • #13
                          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.

                          Comment


                          • #14
                            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

                            Canadian eh
                            Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

                            Comment


                            • #15
                              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.

                              Comment

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