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Thread: Maddox's story

  1. #1
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    Jan 2007
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    8

    Smile 10 mos old baby boy with scoliosis

    I am so glad to have found a place where I can talk with other parents going through some of the same things we are! My baby Maddox was diagnosed with scoliosis at 6 mos. old. He is now 10 mos. old. We have been using a brace for 4 mos. now and at last x-rays his curve has progressed. His doctors have decided to try the brace for another 3 mos. and if we don't hold or see some improvement the they want to try casting. They say the most important thing is to try to wait as long as we can before we they have to do growth rods. Maddox also had issues at birth. At 37 weeks gestation my OB said that my fundal height measurement was small. After a sono, we did an emergency c-section because he was indeed very small. He weighed only 3lbs. 9oz. when he was born on 4-4-06. He was very wrinkly, his kidneys were not working, his fontanels in his skull were huge and open, he could not suck, and when we tube fed him, he did not digest his food. Our pediatrician sent him to a children's hospital because he was baffled. As soon as we arrived there is condition began to improve. The docs there did all sorts of tests to look for any syndrome, etc. After 3 weeks and not finding any thing we brought him home at 4lbs. 6oz. Everything has been great until this. We are just so worried and frustrated! Also Maddox is still very small. He only weighs about 141/2 lbs., but developmentally he is doing well with pt only every 2 weeks. If anyone has a story to share or any advice we would so appreciate it!! Also if anyone has any knowledge of how these things might be connected, please comment!
    Last edited by d.o'toole; 02-06-2007 at 03:55 PM.

  2. #2
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    Sep 2003
    Location
    north of boston, ma
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    122
    hi,

    my son lucas who is now 5 yrs old was diagnosed with scoliosis at 18 mos. what degree of curvature does your son have? what hospital are you going to? i'm very curious about the casting recommendation from your ortho since my son did have serial plaster casting from 2 1/2 yrs old to 4 1/2 yrs old. it helped tremendously. he is still wearing a brace, but so far we have avoided surgery for the scoliosis. there are a couple of yahoo group websites that are out a bit more active if you wish to check those out.

    my best,
    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  3. #3
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    Jan 2007
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    Hi! Thanks so much for your reply! Maddox sees Dr. Nigel Price at the Children's Mercy Hospital in Kansas City. He is supposed to be one of the best in the region. The degree of his curves are in the mid-thirties with his brace and in supine (lying down) position. I'm really nervous about the casting, I guess because I don't know much about it yet. Could you share some of your experiences with us? Of course we are willing to do anything, but would like to avoid surgery for as long as possible.

    Thank you again, Dena

  4. #4
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    Sep 2003
    Location
    north of boston, ma
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    hi dena,

    i found the casting experience to be so much better than the bracing in young children. one reason is that at least you know that the cast is always on and in the same place and gradually helping to correct your child's curve as he grows. there was a paper out in 2005 regarding this treatment, and the ortho who is responsible has been convincing orthos in the us to try this treatment in infantile scoliosis patients. it is a slow process, but more and more orthos are being convinced that this treatment is so much better in terms of correcting the scoliosis versus just putting off surgery until a later date. of course, as with everything, it is not a guarantee, but the current methods of bracing do not work.

    i would suggest that you go to this website and read up on some of the stories and information regarding casting: www.infantilescoliosis.org

    also, i would be happy to e-mail you off-board with a link to my own website with pictures of my son in his various braces and casts. i'll send you a private e-mail with the link and password.

    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  5. #5
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    Mar 2004
    Location
    Maine
    Posts
    28

    casting

    Dena,

    My daughter was diagnosed with scoliosis at 6 months and has worn a brace for years. She is now 8 years old and she is in her second cast. We wish we had known about serial casting when she was an infant. My daughter thinks that the cast is much more comfortable than the brace she used to wear. Her original curve was 54 degrees lying down at 6 mo.
    Good luck with everything.

    Ann R.
    Mother to 14 year old daughter
    Diagnosed with infantile scoliosis at 6 months (54 degree left thoracic)
    Boston Brace for 5 years.
    Montreal to see Dr. Rivard and Dr. Coillard 7/04 to 1/08(spinecor brace and 3 casts)
    surgery with Dr. Clements Oct. 2008 (8 staples and a hybrid rod)
    3 lengthenings with Dr. Samdani
    Scheduled for fusion with Dr. Samdani

  6. #6
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    Jan 2007
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    8
    Thank you so much for your replies. I wonder why our ortho is so reluctant to cast when we have heard so many good things about it? How restricted are the children's movements and activities with the cast? We have worked so hard to help Maddox keep up developmentally and wonder if we are going to see some delays once the cast is on. How often does it have to be changed? We just went back to see the brace specialist because Maddox was getting a small pressure sore from the brace. How do you know with a cast if that happens? Again, thanks for the replies! -Dena

  7. #7
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    Dec 2006
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    9
    Dena,
    I can't really tell you much about bracing or casting. My son has kyphosis and none of these help. The only thing I wanted to mention is that, if in the worse case the bracing and/or casting don't work, get info about other techniques before using growth rods. These run on the vertebrae and have lots of unwanted effects. VEPTR (extendable rods that run on the ribs) seem to be less invasive. Again, let's hope your daughter won't need any of these, but remember this info just in case.

  8. #8
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    Aug 2006
    Location
    Kalispell, MT
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    9
    Dena,

    My son Noah is now doing casting and is in he second cast. I can tell you that Noah did great in his first cast! He was just learning to walk, and having a very hard time with it, before his first cast. 2 days after his cast was put on he was running all over the place! He did fall down a little harder than normal and bumps on the head were a regular sight. However, he was getting better so it was worth it. Our children are very resilient, they can overcome these small obstacles.

    Now make sure that any hospital that you look into does serial casting! I am by no means and expert on this, many in this forum know more than I, but the old method of casting does not do much for the curve. Serial casting works wonders and is changed typically every 6 to 12 weeks. Noah went from 78 degrees to 28 degrees in his first cast. His second was not as good but we were sill at 31 degrees in it.

    We go to the Shriners in SLC and they are wonderful to work with, there were no doctors in the state of Montana that we could find who would even see Noah. Lucky for us my niece has scoliosis and was treated by the Shriners so we had a head start...

    I hope this helps. Keep us posted on how Maddox does. Best of luck!

    Ken

  9. #9
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    Jan 2007
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    8
    Thanks to you for your replies! Maddox is 11 mos old now and "cruising" all over! We are waiting for our next ortho appt. on April 10th. We are very nervous and anxious at what we are going to find. It is reassuring to hear that your son Noah has done so well learning to walk. We hope that this is the next step for Maddox. So far all his milestones have been right on target! I have a question for Ken. Maddox has had some trouble with pressure spots from his brace and I was wondering how you know if that happens when there is a cast on? Also, this may sound like a silly question, but does hygiene ever become an issue? I guess it should be obvious to me, but I'm wondering how you keep an active little fellow, (in the middle of a hot summer), clean and healthy when you can't just pop him in the tub! (Please be patient with me and my ignorance!)

    My best, Dena

    _______________________


    Mom to son Maddox, 11 mos.(seeing Dr. Nigel Price at Children's Mercy Hospital in Kansas City), a daughter Ashton, 8, and a son, Jackson, 4.

  10. #10
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    Aug 2006
    Location
    Kalispell, MT
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    Dena,

    Sorry I have not gotten back to you sooner. There is a chance of pressure points leading to sores from a cast. I have only heard of one child with this issue and it did put his treatment back a little as the sore healed. In this case neither the doctor nor the parents knew of the sore before cutting the cast off. We watch Noah by looking under his cast in all the pressure locations that you can see to watch for issues but it can still happen without you knowing. So far we have not had any issues and even if we did, that is minor and something that we can deal with. We would not change the method of treatment for anything! I cannot imagine where Noah would be today without casting, remember he went from 78 degrees to 28 degrees in one cast and the correction held for 4 months! That was after going from 28 to 80 degrees in 3 months with no treatment. For Noah and his condition casting is the best form of treatment.

    Hygiene IS an issue and again just something that you deal with. Urine was the biggest issue for us, it was very difficult to keep Noah from peeing up into his cast. (there are methods to putting on diapers that you learn with time) This only occurred a couple of times but it was still a little weird to deal with. His second cast has not been nearly as big of an issue now that we know how to care for a baby in a cast. Our doctor puts a very long a stretchy shirt under the cast which you can clean and dry with a cool blow dryer. After that fails we cut sections off as needed. As for keeping Noah clean, we just sponge bathe him and lay him on the kitchen counter to wash his hair in a sink. All this can be dealt with as long as we are helping our children get through this difficult part of their lives.

    I think that you will find that everything becomes second nature and you learn to react to situations a little different. Noah now needs tubes in his ears... we cannot put him under while in the cast and cutting the cast off here then waiting a week and driving 12 hours was not an option to us. So in 2 days we lined up a doctor in SLC and have scheduled to have the cast cut off on Sunday, tubes put in on Monday and casting again on Tuesday all in 2 different hospitals. Of course this is in April but an example of how you learn to react differently and get the medical field to assist you in your situation.

    We feel very lucky to have found the Shriners and serial casting. For us I cannot imagine any other form of treatment. Without casting I truly believe that we would have already had to have surgery to help Noah. In time a brace will be the right method of treatment for us but for now we are blessed with casting.

    I know this is a little lengthy but I really hope that it helps. If you need more information or would like to talk with us about our experience in casting let us know. We would be more that happy to assist, just PM us and we will send out contact information to you.

    Ken

  11. #11
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    Jan 2007
    Posts
    8

    Update on Maddox

    Ken, Thanks for your reply! I have an update on Maddox. Sadly, his curves have increased, his ribs are starting to collapse from the current brace and yet our ortho at Children's Mercy Hospital in KC still does not think casting is the best option for Maddox. We will be getting a new brace in about 2 weeks. I am so frustrated! Everything I have read points to casting as the best treatment. The only thing I can think of is that he is still very tiny for his age(16lbs at 1 year), and maybe he is too little to do it. I love this dr, he has the best bedside manner and is so very kind and truly cares about these children, but I am my son's advocate and have to what I think is right for him. So.. We are probably going to look for a second opinion. Our pediatrition has suggested children's hospitals in Chicago, Minneappolis, Little Rock, and St. Louis. Any recomedations? We are really scared and could use some input. (dr. has also mentioned VEPTR? Anyone have any info on that treatment?) Thanks, Dena

  12. #12
    Join Date
    Mar 2004
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    1,140
    Hi Dena,

    I understand you have a very good relationship with the ortho and this is good! However.... 15 years from now your child will be much older and perhaps suffering from the ill effects of the wrong treatment and this "wonderful" ortho with the great bedside manner will be long gone! The relationship you have with your child will span a lifetime! I don't know if serial casting would be an option but according to medical journals, it's the best way to go. I would try to get an appointment with a doctor in the U.S. who routinely casts children. As for why your ortho does not believe in serial casting is any one's guess. Perhaps doctors nowadays are too busy putting out fires to read medical journals Personally I would prefer to put my child through the risks of general anesthesia every 4 to 5 months for a cast change rather than undergoing invasive surgery every six months for rod lengthening. The choice is yours, you can see for yourself what is happening to your infant child's curve.


    *
    Last edited by Celia; 04-25-2007 at 11:36 AM.

    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

  13. #13
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    Sep 2003
    Location
    north of boston, ma
    Posts
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    dena,

    i'm so sorry that maddox's curves continue to worsen. it is definitely time for a second (or third) opinion. i hope that celia doesn't mind since this is from her yahoo group, but here is a list of doctor's who cast although dr. d'astous in salt lake city, utah and dr. sanders in erie, pa are doing casting on a regular basis. one of the orthos who studies under dr. sanders (dr. khoury) will be going to the shriners in alabama, but i'm not sure when that will be. here's the complete list of doctor's who cast:

    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 Institute of Orthopaedics
    600 Creekside Drive, Suite 611
    Pottstown, PA 19464
    Phone: 610.792.9292
    Fax: 610.792.9293
    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, M.D.
    Orthopaedic Center
    The Children's Hospital
    1056 East 19th Avenue
    Denver, CO 80218
    303-861-6615
    Fax: 303-837-2925
    http://www.thechildrenshospital.org/...x?doctorID=524

    before being evaluated for the veptr, i really think that you need to get a casting doctor's opinion about maddox's back. i'm going to send you a private pm with my cell phone # if you feel like talking. it's easier for me to talk versus typing some additional information.

    my best,
    deshea
    Last edited by desheah; 06-12-2007 at 02:41 PM.
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  14. #14
    Join Date
    Mar 2004
    Posts
    1,140
    I don't mind at all! Actually that list is in a separate thread under the heading "Doctors who Cast". We have to remember to add Dr. Khoury to the list when he transfers to Alabama.


    *

    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

  15. #15
    Join Date
    Apr 2007
    Location
    Indiana
    Posts
    7

    Difference in casting methods?

    Hello,
    I have a 7 month old daughter Sophia who has been doing the rounds with docs & tests the last two months (Peds, Neurologists, Neurosurgeons, Pulmonolgists, MRI, EMG, etc,). We believe that she has infantile idiopathic scoliosis (severe curvature now) and are looking at casting as a possible treatment option. We were told to go to Shriners in Erie, PA but since we live in Indianapolis the Cincinnati Children's Hospital would be much closer. Is there a difference in casting methods used at these two hospitals? We are seeing Dr. Alvin Wilson in Cincinnati on 5/11. Does anyone have any experience with him? Any insights or advise for a Mom just starting this journey?

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