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Thread: PLEASE READ!! SLC Shriners and Casting!! I have ?'s

  1. #1
    Join Date
    Jan 2006
    Location
    Macomb, Michigan
    Posts
    8

    Exclamation PLEASE READ!! SLC Shriners and Casting!! I have ?'s

    Hi Everyone,

    Sorry I haven't posted in a while. I've been reading mostly and collecting info. Thank God for this forum - I don't know what I would do without it!

    I have some wonderful news to share; Liam was accepted at the Shriners Hospital in SLC, Utah! We saw Dr. D'Astous on March 23 and he was just FABULOUS - everyone there was! It was so nice to FINALLY deal with someone who knew what they were talking about! They did tell me that Liam had one of the worst cases of infantile, idopathic scolisis they had ever seen (105 degree curve), but that they had seen it and had a plan of action - finally a plan after 8 months of searching! I just cried! I felt so welcome there and the hospital/area is beautiful!

    At The University of Michigan (supposedly one of the best hospitals in the US) I was told that Liam had a ridgid curve and had to have halo traction and rods placed in his back immediately - this was when he was 9 months old. U of M NEVER did any special test to check if his curve was ridgid or flexible......... they just told me that's what it was ridgid and that was that. I didn't feel comfortable with what they told me and was why I joined this forum and wrote in the first place. It was the best thing I ever did! I received more correct, useful information here than from any of these so-called specialists! Anyway, Shriners did a supine traction x-ray on Liam and found that his spine was NOT ridgid but actually flexible - his curve went from 105 degrees to 55 degrees while in light traction! VERY ENCOURAGING and the fist time we had heard this. Liam had been to 3 ortho. surgeons priot to SLC and not one did this special x-ray! I was astounded! What is going on here! Had I not researched this more and talked with other moms, I would have put my baby through unnecessary and potentially harmful procedures for nothing! I'm just blown away by this and scared for others who may not have the resources that I have to do research and figure out that what half these Dr.'s are telling us about scoliosis is incorrect!

    Well, Liam, his dad and I go back to SLC Shriners on April 8th and Liam is going to get his first risser cast on April 10th! I'm excited and scared all at the same time! I know something has to be done and finally a plan is in place but I have mixed emotions about it all. I will miss his baths...... rubbing his back..... etc. and am worried about how Liam will take all of this. I'm sure he will be fine, but I'm still scared..... any advice? Words of wisdom? Also, while reading others posts - is the risser cast the same as the serial cast? I'm confused now after reading....... please share whatever you can! Post, e-mail me or call me PLEASE! Thank you! I have a million questions about the cast. Anything you can share would be great!

    Hopefully Yours,
    Jennifer O'Donovan
    Liam's mommy - 12 months old (3-25-05) 105 degree curve

    ** P.S. I'd like to include some pics but don't know how?? Can someone tell me please, thank you!!

  2. #2
    Join Date
    Sep 2005
    Posts
    877

    Liam

    Jennifer,
    I am so happy for all of you. Have you ever talked to Celia, whose little girl was cast at a young age? She posts on here a lot. She is usually posting about Spinecor. You can send her a private message.

    My thoughts and prayers are with your family. Everything will be okay.

    Melissa

  3. #3
    Join Date
    Mar 2004
    Posts
    1,140
    Quote Originally Posted by moosie45
    I have some wonderful news to share; Liam was accepted at the Shriners Hospital in SLC, Utah! We saw Dr. D'Astous on March 23 and he was just FABULOUS - everyone there was! It was so nice to FINALLY deal with someone who knew what they were talking about!
    Yeah Yeah Yeah ! This is the best news I've read this morning !


    Quote Originally Posted by moosie45
    Anyway, Shriners did a supine traction x-ray on Liam and found that his spine was NOT ridgid but actually flexible - his curve went from 105 degrees to 55 degrees while in light traction! VERY ENCOURAGING Well, Liam, his dad and I go back to SLC Shriners on April 8th and Liam is going to get his first risser cast on April 10th!

    I think Liam is in very good hands with Dr. D'Astous ! I've heard such wonderful things about him and he genuinely cares for these children.


    Quote Originally Posted by moosie45
    I'm excited and scared all at the same time! I know something has to be done and finally a plan is in place but I have mixed emotions about it all. I will miss his baths...... rubbing his back..... etc. and am worried about how Liam will take all of this. I'm sure he will be fine, but I'm still scared..... any advice? Words of wisdom? Also, while reading others posts - is the risser cast the same as the serial cast? I'm confused now after reading....... please share whatever you can! Post, e-mail me or call me PLEASE! Thank you! I have a million questions about the cast. Anything you can share would be great!
    Don't be scared....the series of plaster jackets is not forever ! By far it's the best thing out there for children with progressive infantile scoliosis. I truly hope it's not too late for Liam. The treatment you got at Michigan State is analogous to a hit and run car accident.

    Quote Originally Posted by moosie45
    ** P.S. I'd like to include some pics but don't know how?? Can someone tell me please, thank you!!
    I prefer to use photobucket.com. This is a site that allows you to upload and share your photos for free !


    celia

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Jennifer,

    I'm so happy to hear you had a positive experience at Shriners! I know they have the children's health in their best interest, always. It is amazing to have a team of professionals who you can put 100% trust and confidence in. Especially when the potential for long term care is very high. Having someone you trust lifts a huge burden off your shoulders. I know.

    Please keep us posted! What time do you fly into SLC? We'll be in SLC on Saturday... just wondering. Email me if you have a minute.

    My best,
    Carmell
    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/

  5. #5
    Join Date
    Jan 2006
    Posts
    513
    Jennifer,
    I am so happy for you and Liam. You are in wonderful hands, now, it sounds like.
    The moms and dads on this forum are wonderful.
    God Bless.
    Cheryl
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  6. #6
    Join Date
    Jan 2006
    Location
    Erie. PA
    Posts
    4

    Hello Jennifer & Liam

    Hello Jen,

    I believe we have talked before. I am so happy to here Liam is getting the care he needs. I am taking care of Mariah who was placed in her first cast on 3/30. Do you belong to the infantilescoliosis support group on yahoo - I have learned so much from them wonderful parents. You really should join - there are 2 other Jennifers who post LOL. I have often wondered about the parents who get misguided info on there babies with scolio and I have heard horror stories - like they will out grow it or sometimes ped's just dismism them all together. Mariah's curve was 46 and went down to 30 in her first cast - that is not as good as I have heard. But she is making progress and she is learning to do things in a diffrent way now. I think risser is a cast that actually goes over their shoulders and serial is more torso - it also is the diffrence between the tables they use to cast the babies. E-mail anytime you want sleepypeepsinpa@aim.com - also visit infantilescoliosis.org if you have not already. Good Luck and I will be praying for baby Liam.

  7. #7
    Join Date
    Mar 2004
    Posts
    1,140
    There is a really good presentation on the SRS website on casts - it's a power point presentation. If you don't have powerpoint, a friend has converted it to PDF. Note that they are using only fibreglass on this patient and the cast extends high up in the neck area, which I think is a personal preference for some professionals but not absolutely necessary. I think it could be due to the location of the curve and also the fact that this young girl has a VERY severe curve. Deidre's casts were ALWAYS underarm casts which were REALLY nice because they could be easily concealed under clothing. There was also plaster under the fibreglass exterior. No one ever suspected there was anything out of the ordinary with Deirdre and only close friends knew about her casts and only because I told them

    http://www.franzen2004.com/files/rissercotrel.pdf

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