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Thread: 32 to 80 degrees in 3 months...

  1. #1
    Join Date
    Aug 2006
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    Kalispell, MT
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    32 to 80 degrees in 3 months...

    Hello all, our 13 month old Noah is seen at the Shriners Hospital in Spokane Wa. for Infantile Scoliosis. I first discovered Noah's scoliosis at about 2 months and he was officially diagnosed with idiopathic infantile scoliosis at about 6 months. His first X-Rays measured 21 degrees and his second was at 24. At 10 months he measured in at 32 degrees... Yesterday at 13 months he had progressed to 80 degrees... I almost hit the floor when I saw the X-Ray! Both my wife and I thought that he was looking better and we were sure to see some correction, we were wrong!

    Until this visit the treatment has been to watch for progress, good or bad. Yesterday I think we found the bad! Of course we have done the MRI to rule out 'causes' and to this point the only thing noted is a small column of fluid on the spine which his neurologist will not call a cyst as it is to small. At 13 months Noah is not walking so his Dr. is not willing to brace him fearing it will hinder his development and progress. So in 3 more months we will return to have him fitted for a brace. His Dr. was pleased to see that he is still very flexible and can still be corrected so some degree and feels the brace will buy us time.

    We spoke about serial casting but unfortunately the Spokane hospital does not have the correct table to do this type of casting. So if we find that bracing will not help prevent the progress of his curve we will be sent to SLC for serial casting.

    I'm not sure what I am getting at other than it is good relief to read other posts out there and to know that we are not the only family dealing with this... I thought it was tough on me when my niece went through scoliosis and fusion... Now I know how my sister was feeling all these years.

    I pray that we will not see any additional movement in the next 3 months.

  2. #2
    Join Date
    Oct 2003
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    Utah
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    Ken - Welcome.

    I would strongly suggest you take Noah to SLC sooner than later. If the 80 degree measurement is accurate, waiting 3 more months, then waiting to see if bracing helps (with that degree of curve in a toddler, my guess is it won't help) will just be wasted time. The serial casting they do in SLC needs to be done sooner than later for best/optimal outcome. I have visited many patients at Shriners in SLC and I know they will give you the best recommendations. I'm glad to hear the spinal cord is healthy. That's a huge step in the right direction.

    Please consider going to SLC for an evaluation, if nothing else. They will be able to help with this rapidly progressing curve.

    BTW, my son, Braydon (11yrs old) has congenital scolios so different scenario. However, similarities exist - he had a 45 degree curve at birth, 50 degrees at 8 months, and within 6 weeks jumped to 75 degrees. This was the result of a major growth spurt (just like spines do during adolesence).

    Best wishes and I look forward to hearing how things go for your little man.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Mar 2004
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    Ken,

    I am not in the least bit surprised by the obvious lack of concern to your son's condition by doctors at Spokane. The fact that you discovered your son's scoliosis at 2 months and he wasn't "officially" diagnosed until 6 months and yet..... NOTHING continues to be done. His curve is now 80 degrees and these "specialists" recommend waiting an additional three months before bracing - their main argument being that bracing now will "hinder" his development.

    My daughter went through serial casting without an AMIL frame and I'm aware of other centres such as Cincinnati Children's Hospital that don't have AMIL frames and they're having equally good results. I don't understand these lame excuses for not casting children with infantile scoliosis if it means it could possibly save their lives. What is so complicated about casting a child ?! Are these doctors nuts ???????

  4. #4
    Join Date
    Aug 2006
    Location
    Kalispell, MT
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    9

    Noah's Update

    Great News!

    Noah will be heading to SLC to get his first cast on Sept. 18th. We are so happy and thankful to the Shriner Hospital in SLC! I had the opportunity to visit the hospital while I was in the area on business today. What a great place.

    We look forward to getting Noah on the path to recovery. We will update everyone on how the casting goes and how our little angle progresses.

    Thanks for the words of encouragement and praying for us.

  5. #5
    Join Date
    Mar 2004
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    1,140
    Ken,

    I'm at a losss for words to explain the situation you and your family find yourselves in. Your son has a very very long road ahead of him and it really didn't have to be this way had your doctors started treating your son's curve when it was still at a manageable 20 degrees or even 30. I think his severe scoliosis will hinder his development more than anything else and his life is forever changed. I'm sorry if I sound so down, but I find the standard of care for children with infantile scoliosis very depressing and your story did it for me.

    Please keep us posted and I do look forward to happier news and happier times for you and your family.
    Last edited by Celia; 09-01-2006 at 08:45 AM.

  6. #6
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    Oct 2003
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    Utah
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    Ken - I am so glad to hear you have an appointment with Shriners in SLC. I know you will be pleased with the information they give you and with all the help they can provide. It's a long road, but its great to know you have experience on your side now. I'm glad you visited the hospital. It's an amazing place! I've been there many times to visit families (my son is a patient at a diff hospita) and I'm always impressed with the facility and people. A truly caring place. We'll be anxious to hear how the visit on the 18th goes!
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  7. #7
    Join Date
    Aug 2006
    Location
    Kalispell, MT
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    9

    Back at home...

    All,

    We are back at home after Noah's first casting. The trip to and visit at the SLC Shriner Hospital was a great experience. Noah measured 78 degrees in the morning before casting. Post casting he measured in at 28 degrees! His body took to the cast well although he really does not like having the cast on, mostly because he cannot crawl, sit up, roll over... But he is walking better than ever before. We hope that the crawling and sitting up will come back to him in the coming days.
    Dr D'Astous, Mike Pond, and everyone involved with our visit were a bigger help than we could have ever hoped for. Currently the plan is to re-cast in 3 months and take it from there. We are still hopeful that the Risser casting will correct Noah but reality is still there that some day we may need to take him off to surgery.
    Thanks for the support and kind words.

    Noah, Ken and Susan
    Last edited by Ken_Hannah; 09-22-2006 at 11:06 PM.

  8. #8
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    Mar 2004
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    Wow !!!!! That is amazing news!

  9. #9
    Join Date
    Sep 2003
    Location
    north of boston, ma
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    way to go, noah! that is fabulous news. ken, thanks so much for writing in about your experience in slc. hopefully others who come on the nsf board for support with their children who are diagnosed with infantile scoliosis will realize there is a treatment out there that can address even these larger curves without surgical intervention. of course, surgery has its time and place, but not before other conservative treatment! i'm so happy for your family.

    Quote Originally Posted by Ken_Hannah
    We are still hopeful that the Risser casting will correct Noah but reality is still there that some day we may need to take him off to surgery.
    i just wanted to say that it definitely is hard to think that your child may have to have surgery down the road, but in the meantime, at 28o (versus 78o) his heart and lungs have plenty of room to grow which is the real reason that infantile (versus adolescent) scoliosis is such a scary diagnosis. again, congratulations, and i look forward to seeing posts from you to track noah's news.

    my best,
    deshea

    mom to lucas (4 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o, spinal detethering due to a tight/fatty filum at 22 months, tlso and charleston/bending brace from 18 mos to 2 1/2 yrs old, serial plaster casting from 2 1/2 yrs old until june of this year at shriners in erie, pa, now in a spinecor brace at 18o/14o. of course , the future is uncertain, but as always we are laughing and enjoying life!) and ruby (2 yrs old and a handful!)
    north of boston, ma

  10. #10
    Join Date
    Aug 2006
    Location
    Kalispell, MT
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    Update on Noah

    I thought I would give everyone an update on Noah. Currently he is about a month away from getting his 3rd cast. His second cast is going well and we had a great experience at the SLC Shriners hospital again. His Dr. achieved a correction to 31 degrees which was a little less than his first casting but still not bad at all. When he was out of the cast I could not believe how great he looked. For the first time in his life his head, shoulders and hips were all in alignment. We are hoping that this cast works as well as the first did.

    In addition to the cast change Noah will need tubes in his ears. This was a real moment of turmoil for us. The anesthesiologist did not want to put him under when he was in his cast. They wanted to cut his cast off here in Montana and have his tubes put in. Then a week or so after drive for 12 hours to SLC and have the new cast put on. Not a option for us. So we went to work and found a Dr in SLC that would put the tube in his ears the day before his next cast. So not in April we will drive down and cut the cast off on Sunday, have tubes put in on Monday, and then have the new cast put on Tuesday. It will be a long week for the little man but he can take it. We feel blessed to find medical staff willing to work with our situation.

    We will write again after this casting to let everyone know how Noah does. I hope it continues to get easier with every cast.

    Take care,

    Ken

  11. #11
    Join Date
    Mar 2004
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    1,140
    That's wonderful to hear!!! I hope the doctors in SLC can get better correction with the next cast. Let us know as the day approaches so that we could all be thinking positive thoughts. Whenever my daughter had a cast change I would always light a candle for hope the day before.


    ****

    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

  12. #12
    Join Date
    Aug 2006
    Location
    Kalispell, MT
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    Cast #3

    All,

    Just a quick note on Noah. We will be leaving for SLC tomorrow for cast #3! On this trip Noah will also get tubes placed in his ears so it will prove to be a long week...

    We will let everyone know how the casting goes as soon as we can. We are praying that this cast did its job and we will see more correction.

    Ken

  13. #13
    Join Date
    Oct 2003
    Location
    Utah
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    Travel safe! Glad to hear things are going well still. Good luck with the ear tube surgery and the next cast. Hopefully all will be well.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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