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Thread: Maddox's story

  1. #16
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    There may be differences in casting technique as each doctor brings his/her own way of doing things which is what one would expect....however the outcome should be the same as growth is being channelled in a new direction. Dr. Sanders who is hailed by many parents as a Mehta trained doctor was casting children for two years prior to her coming over the States to teach him her method and was getting incredible results nonetheless. In fact the underarm casts he applies are slightly different than the ones she recommends which are over the shoulder. My previous ortho, Dr. Hedden was never trained by Min Mehta and my child's results are remarkable considering she started out with a sixty degree curve.

    Early treatment yields best results as not all children are successful with serial casting. The key is to keep the child in a series of casts long enough sometimes up to two years so that growth can correct the deformity and hopefully the curve improves with each cast change. It is a big time commitment but it's *so* worth it in the end when you consider the alternative.


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    Last edited by Celia; 04-25-2007 at 05:59 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

  2. #17
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    Thanks Celia!

    We are considering all options (although I am hoping we can do the serial casting over surgeries) and consulting with the neurologist tomorrow and neurosurgeon next week. However, it seems there is no easy quick fix. But we are committed to doing whatever it takes to help her achieve a happy, healthy life.

  3. #18
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    Tina,

    If you can get in with Dr. Sanders, go for it! He has casted many many children with infantile scoliosis and quite honestly given a choice between doctors, I would go with Dr. Sanders. However time is of the essence! My daughter was probably saved by Dr. Hedden's quick action and also our paediatrician who hand delivered her file to the hospital to make sure it was in the right hands. From the time of diagnosis to the time the first cast was applied was a two week wait. She had a sixty degree curve when the first x-ray was taken, two weeks later the curve had already progressed to 68 degrees!!! Waiting three months for an appointment can be devastating for a child with progressive infantile scoliosis because it could mean the difference between a resolving curve and one that doesn't respond at all to treatment. Rigid curves that progress beyond 25 degrees will never respond to treatment and these children will face a life long battle with scoliosis. It is nice getting in with a doctor who has handled many cases and has experience however by the time you get to see him/her, it could be too late.

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    Last edited by Celia; 04-26-2007 at 12:44 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

  4. #19
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    That is the battle that I have been facing. She has had pneumonia twice and other pulmonary issues, so we have chest X-rays from her at 2 months, 4 1/2 months and 6 1/2 months. The change in curvature from the last two is shocking! It went from a mild (undetected by doctors) curve to a very severe one. No once has been able to tell me degress of curvature but I am trying to find out. It has been two months since I took her to the pediatrian with a visible curve in her spine (and it was no longer in the center of her back but very much to the left and the shape of a "c"). She sent us to a neurologist (week and half to get in) who scheduled an MRI of her brain and back (that would have been over a month later until I insisted he rewrite the order as STAT so we could get it two weeks later). Follow up vist to neurologist was fruitless- said still didn't know what was causing the curvature, fluid in spinal cord, low muscle tone, or pulmonary issues. Ordered an EMG and said I needed to see a neurosurgeon- but the one they wanted her to see wouldn't give her an appointment for 2 months! I said "No Way" and went on-line to find pediatric neurosurgeons that specialized in the spine. A doc at Harvard/Children's Hospital Boston agreed to look at her films and MRI results. He pulled in his counterpart in Ortho who said it was progressive idiopathic infantile scoliosis and that I need to get her treatment ASAP! He recommend Dr. Sanders in Erie, PA. I am still waiting to hear back from them but did get her into the Children's Hospital in Cincinnati with Dr. Alvin Crawford (they do serial casting and other treatment options) on May 11th. It is killing me to have to wait another 2 weeks plus when I know that every day her spine is getting more and more curved and may be effecting her treatment options and potential outcome. However, they said it was a miracle I got in that soon?! My Pediatrian is also calling every Ortho in Indy to make sure there isn't someone here that does serial casting that could get her seen sooner. Thanks for letting me vent. It really helps to have the ear of someone that has been through it.

  5. #20
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    Unbelievable!!! This is so frustrating!!! Something like this would make me go crazy! Which reminds me of that saying "Water water everywhere but not a drop to drink" All these hospitals and no one can help your baby. I'm sure they'll be more than willing to assist when surgery is necessary.


    *

    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

  6. #21
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    Good News!
    After pleading with my pediatrian for help she has found an Ortho here in Indy that does serial casting for scoliosis through St. Vincent's Hospital (Dr. Didelowt). We have an appointment Tuesday morning!! I am praying it is not too late for her to respond to casting and that she is a candidate for that type of treatment. Thanks again and I will post once we see him to confirm his ability to do casting so it can be added to the list you have posted (a fantastic resource for parents!).

  7. #22
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    Wonderful news Tina!!!! I hope he can help your little girl next week. Here's an article you might want to print out and bring along with you to the appointment in the event that your ortho hasn't seen the article. There are pictures of an infant child with a cast and that's generally what your ortho should be aiming for. My daughter's casts were slightly different and didn't go over the shoulders as in the picture.



    http://www.scoliosis-support.org/upl..._scoliosis.pdf


    *

    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

  8. #23
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    update on Maddox

    Hello everyone! We just took Maddox on Monday to get his new brace. I do not really know the correct names for all the braces, but this one is a harder plastic and more rigid. Also much bigger and heavier. Maddox is quite angry with us at this point! He was becoming very mobile and is now having to relearn some things. The brace specialist is sure that when we go back for more x-rays in July that there will be improvement. I'm not willing to take that chance, so when we see the pediatrician tomorrow I will take the list of doctors and get his opinion as well(and hopefully a referral). Also are there any parents out there that know anything about Russell-Silver Syndrome and Scoliosis? It is something that I am researching because Maddox has other issues as well, and we are still trying to get more clues as to how all his symptoms might tie together.

    Thanks,
    Dena

  9. #24
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    hi dena,

    thanks for the update. i don't know anything personally about RSS and scoliosis, but doing a quick search on the web, i found the following website:

    http://www.magicfoundation.org/www/d..._syndrome.html

    one characteristic listed is scoliosis, but more due to a general body assymetry and leg length discrepancy. the entire website seems very informative in addressing all of the issues affecting RSS children.

    good luck with the new brace. did they take any x-rays?

    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

  10. #25
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    Deshea, We went to the pediatrician on Thurs. the 3rd of May. My husband and I visited with him about the Russell-Silver Syndrome and he did not think that this is what Maddox has. Maddox had a genetic work up at the children's hospital when he was born and this was not detected. I asked him about the fact that what I have read says that there is not a test to diagnose this; that it is dr diagnosed by what symptoms are present. He says that the genetic drs would have picked up on the symptoms then, but he promised to look into it. There are so many symptoms that have appeared slowly over the last year. I don't know. Maybe i just want it to be RSS because it is something I know we can handle, that I know he will be ok if he has. Anyway, we talked about a second opinion, I gave him your list of hospitals and drs, and we talked in length about what has been done for Maddox thusfar. We came to the conclusion that we would give the brace a chance to work. The last brace was to be until he was big enough for a "real" brace. Our next ortho appt is the first week of July. We have a agreed to look at the x-rays then and if there is not sinifigant improvement we will go for a second opinion. I noticed that you did not have a hospital in St. Louis MO listed. Does anyone have any info on the children's hospital in St. Louis? We are leaning towards there, Minneapolis, Denver, or Chicago. Are any of these any better than the others? I hope and pray that I am not making a huge mistake by waiting. Our ortho and brace specialist have assured us that they are just as successful with braces as casting. Thank you for your number, I do plan on calling but wanted to know when a good time was for you to take calls. Let me know. Sorry this has gotten so long!

    My best,
    Dena

  11. #26
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    hi dena,

    it's so hard to make the right decision for your son and your family. your doctor tells you one thing, but you read about other options and opinions from other parents and other doctors. if they differ, who's right?

    just another opinion --

    personally, i think that you have given bracing a chance. i don't know what kind of brace you had initially, but it didn't work. rigid braces *usually* (there are always exceptions) don't work for infantile scoliosis. the reason that i didn't have anyone on my list for st. louis is that i don't know of anyone who casts there. is dr. lonstein there? i'm almost positive that he doesn't cast and in fact, recommends growing rods. i would choose veptr over growing rods any day for my son if that were the choice that i had.

    i had e-mailed you off-board that there is an early treatment trial project (ETTP) being held in chicago soon that heather hyatt from the infantile scoliosis outreach project (ISOP) www.infantilescoliosis.org is putting on. you could have your child seen by miss mehta and have a cast applied by her. dr. sturm at the shriners there is learning the serial plaster casting technique. i would highly recommend that you contact her at 1-866-417-4873 or heather@infantilescoliosis.org . i did participate at an ettp by isop at the erie, pa shriners hospital in november of 2005. we decided not to have miss mehta apply lucas' cast since we had already been going to dr. sanders for 6 months. as celia mentioned previously, dr. sanders (and all orthos) have their own way of doing things. his casts differ slightly from the ones that miss mehta applies. we felt more comfortable continuing with his method.

    anyway, i think i might be out of advice, and i don't want to seem like i'm forcing you into something that you are not ready to do. please consider calling and talking to heather about maddox. she herself is a mom of a child that had infantile scoliosis (as you can read from her website above).

    as always, 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

  12. #27
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    Quote Originally Posted by desheah
    the reason that i didn't have anyone on my list for st. louis is that i don't know of anyone who casts there. is dr. lonstein there? i'm almost positive that he doesn't cast and in fact, recommends growing rods. i would choose veptr over growing rods any day for my son if that were the choice that i had.
    Deshea,

    Are you saying dr. Lonstein doesn't cast??? I have corresponded with a few moms whose children were casted by dr. Lonstein.....if I remember correctly he wrote a bracing article which mentions the necessity of serial casting for infants. I know for a fact that Dr. Lenke in St. Louis doesn't cast because he mentioned this in one of the SRS webcasts and prefers sending parents off to the orthotics department for a plastic brace.

    It's the infantile growth spurt that can really mess things up! It's always so difficult to watch these things unfold and often with dire consequences.... What really breaks my heart is the children. If it were me, I would ask this doctor that wants to continue with the plastic brace to show x-ray results of his successes with *progressive* infantile scoliosis. Many times these doctors brace curves regardless of whether it's resolving or progressive and don't do necessary tests to determine a progressive curve and when the resolving curve disappears they wrongly believe that the plastic brace had something to do with it. Resolving curves will correct without treatment and since the majority of infantile curves resolve, it's easy to see why doctors are getting the wrong impression. Progressive infantile scoliosis almost never resolves with plastic braces and this is fact!

    Isn't the ETTP two months from now?? I personally feel that getting *any* cast on the kid for now is better than waiting two months for proper technique. If the parent isn't happy with the cast, they have time to make arrangements with a doctor who routinely casts children - in the meantime the curve can't go anywhere. I can list countless children who fell through the cracks waiting for appointments with the doctors in SLC and Erie...there is no way these children will ever respond to treatment, regardless of technique. In my opinion, time is the critical factor.







    *
    Last edited by Celia; 05-08-2007 at 02:39 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

  13. #28
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    Jun 2007
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    Quote Originally Posted by Celia Vogel
    Deshea,

    Are you saying dr. Lonstein doesn't cast??? I have corresponded with a few moms whose children were casted by dr. Lonstein.....if I remember correctly he wrote a bracing article which mentions the necessity of serial casting for infants. I know for a fact that Dr. Lenke in St. Louis doesn't cast because he mentioned this in one of the SRS webcasts and prefers sending parents off to the orthotics department for a plastic brace.

    It's the infantile growth spurt that can really mess things up! It's always so difficult to watch these things unfold and often with dire consequences.... What really breaks my heart is the children. If it were me, I would ask this doctor that wants to continue with the plastic brace to show x-ray results of his successes with *progressive* infantile scoliosis. Many times these doctors brace curves regardless of whether it's resolving or progressive and don't do necessary tests to determine a progressive curve and when the resolving curve disappears they wrongly believe that the plastic brace had something to do with it. Resolving curves will correct without treatment and since the majority of infantile curves resolve, it's easy to see why doctors are getting the wrong impression. Progressive infantile scoliosis almost never resolves with plastic braces and this is fact!

    Isn't the ETTP two months from now?? I personally feel that getting *any* cast on the kid for now is better than waiting two months for proper technique. If the parent isn't happy with the cast, they have time to make arrangements with a doctor who routinely casts children - in the meantime the curve can't go anywhere. I can list countless children who fell through the cracks waiting for appointments with the doctors in SLC and Erie...there is no way these children will ever respond to treatment, regardless of technique. In my opinion, time is the critical factor.
    *
    This is very disheartening to me. We're facing a new diagnosis (they're calling it congenital, but solely based on his age - he has no deformities or defects per the MRI and x-rays).

    He's in a brace now (from orthotics) and I'm wondering what we need to know when we see Dr. Lenke - I have the PDF saved of the serial casting, but how do we determine whether Jacky has progressive or self-correcting?
    What would you recommend we do from here?

    I DO NOT want growth rods and that's what they first mentioned (the nurse practitioner at Children's)
    Action Jackson - no brace is going to slow me down!
    Diagnosed with a 70 degree thoracic curve 6/6/07
    MRI on 6/14/07 - comes back clean on 6/15/07
    Brace arrived on 6/20/07
    1st Cast applied by Dr. Mehta 8/1/07 at 70
    Yielded no results, back up to 70 out of cast.
    2nd Cast improved down to 40s, 3rd got us into the 30s, as did cast #4.
    At 20 months, in cast 5, correction isn't being achieved.

  14. #29
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    Mar 2004
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    Hi,

    Your son is beautiful, by the way! Are you asking me what I would do? Well....I wouldn't waste any time because time is not on your side. When is your appointment with dr. Lenke?? I would phone his secretary tomorrow and find out in advance if he's changed his views on serial casting for progressive idiopathic scoliosis because it's obvious from the MRI results that this is what your son has. You don't have the luxury of wasting time trying to educate a doctor on the merits of serial casting if they can't see the benefits. I'm almost certain dr. Lenke doesn't do casting, at least this was the case until recently.

    What kind of correction is your son getting with the brace? Is his curve considered flexible? You should make an appointment with one of the doctors on the Casting List and get it done ASAP!!! I've heard from other parents that dr. Lenke is a great surgeon and if your son ever need surgery he will be in great hands! However.... I don't think you're looking for a surgeon at this point in time. Right now, chances are slim that casting will resolve your son's curve but there is still hope, provided your son's curve is flexible! If his curve progresses much further...i.e., to 80 degrees or more, he's past the point of no return and his curve will *never* resolve with serial casting. My daughter went into her first cast with a 68 degree curve and she's doing great and her curve is stable in the Spinecor brace at 1 degree. Joining the CAST support group is a great idea because there are many parents going through the same thing and it's great to have a shoulder to lean on when the going gets tough!

    *

    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. #30
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    Jan 2007
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    Update on Maddox

    Hi everyone! Just a quick note on Maddox. We have an appt. with our ortho on the 12th of July. We talked at last appt. about casting and he still said that he did not think it was right for Maddox. After talking at length we decided that he would get in contact with Dr. D'Astous in Salt Lake for a second opinion. In my understanding this dr. does cast, so I am confidant that he can help us if casting needs to be done. Does anyone know anything about Dr. D'Astous? I have heard great things about him and our ortho thinks highly of him as well. Also we have appt. with Endocrinology and Genetics to learn about the Russell-Silver Syndrome. Everything just takes so much time. It's frustrating. In the meantime, Maddox continues to delight us in every way! He is so small, but such a fighter! (And a talker!)
    As always thanks for the support.

    God Bless,
    Dena

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