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Thread: Khylers St Louis Appt.

  1. #1
    Join Date
    Mar 2006
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    29

    Khylers St Louis Appt.

    Hey everyone we just got back from seeing Dr. Lenke alot to digest. Khyler's curve has increased since our november visit to akron childrens then his top curve was 95 and bottom was 20 now top is 123 and bottom is 61. Dr Lenke is sugesting imeddiate traction for four to six months and surgery to follow. Not much different than the last doctor said. he also said khylers spine was completly rotated the back is in the front the front in the back and the one side is puting a lot of pressure on the lung and giving no room for it to expand he was shocked that we hadn't been started on a more aggresive treatment sooner and said that now we are at a life threatning point. those are scary words when someone is talking about your child. i guess sometimes i forget that it's serious im used to the way he looks and all i see is the happy three year old who loves buzz lightyear and playing in the sand box. im pretty scared about being in another state away from family and my two other children while khyler does traction. worried about finding the strenght to do it.

  2. #2
    Join Date
    Mar 2004
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    1,140
    Corina,

    So sorry to hear the curve has continued to progress, it breaks my heart.



    hugs,

    celia

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
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    Thanks for the update. Sorry to hear the curves have progressed so much - that IS frightening!

    At the Shriners in SLC, they are very well experienced in treating kids with extreme curves like Khylers. They do halo traction for a time, then provide VEPTR implants to allow the child to continue growing. I'm afraid Dr. Lenke is suggesting traction then fusion. His little body needs as much chance to grow as possible. There is also a good VEPTR facility in Cincinnati. I don't know where you are located, but maybe if you could get into the Shriners system, you could get another opinion and feel better about the treatment recommendations. I know of MANY families who travel to Shriners in SLC from all over the country and the world. It's worth looking into soon, so you can give Khyler the best care possible. I'd be happy to share our VEPTR story with you, if you are interested.

    Take care!
    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/

  4. #4
    Join Date
    Mar 2006
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    29
    carmell
    i went to that site you gave me i see there are a few different hospitals that offer the veprt we live in ohio about an hour from columbus about three housr from cincinnati so that would be alot closer than the rest but iwas wondering if you had heard anything about that hospital and how good they are closer would be convienent but i'll go anywhere to help my baby.

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
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    Hi,

    I know a patient of Dr. Crawford in Cincinnati who would be able to give you lots of information about the hospital and Dr. Crawford and their experiences. Cincinnati has been doing VEPTRs for a couple of years... not as long as the other sites, but Dr. Crawford keeps in close contact with the other surgeons and they all give each other advice on complicated cases. I would suggest seeing Dr. Crawford sooner than later and giving him a FULL and complete medical history so he can help you find the right treatments.

    I sincerely believe you can avoid fusion surgery, still. It is not a hopeless cause. Fusion should be considered only as a last resort. It would be worth trying other procedures (namely halo traction for 6 weeks or so followed by VEPTR implants) first. You can always go back and fuse the spine. But once you fuse the spine, you can't go back and UNDO a fusion. We learned that lesson the hard way.

    Good luck and please keep me posted. Let me know if I can do ANYTHING to help.
    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/

  6. #6
    Join Date
    Mar 2004
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    1,140
    Corina,

    I've been thinking about you and Khyler and I was wondering if Dr. Lenke did anything to prevent further curve progression....i.e., while you're waiting for things to happen. Is Khyler wearing any kind of support right now ?



    hugs,

    celia

  7. #7
    Join Date
    Mar 2006
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    celia
    no he's not! because there getting him in right away july 3 is when we go. Dr. lenke said at this point all a brace would do is make him uncomfortable and that it wasn't needed for such a short period of time.
    corina thanks for thinking of us!

  8. #8
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    Mar 2004
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    I can't believe you were told to go home without any support and come back in a month and a half Your son's spine is collapsing on itself..... who knows what degree curvature he'll have in July - maybe an extra 20 degrees on top of 123 ? Am I the only one who sees something wrong with this scenario ?????

  9. #9
    Join Date
    Mar 2006
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    celia
    no your not i don't know what the problem is it just seems everywhere we turn there is miss information and khyler just slips through the cracks i just don't know what to do anymore!

  10. #10
    Join Date
    Jul 2005
    Location
    California
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    OMG! No support for a month and a half with a 123* curve. I would definatly try to get into the Shriners system and have a consultation with one of the VEPTR surgeons. I would not want my 3 year old (if I had one) to be fused. He still has all of his growing left to do. In the meantime, get on the phone with his surgeon and get a brace!! DEMAND one! You are the mother, you call the shots. He should have had one at first diagnosis!
    What is his diagnosis. Does he have any hemivertebra, is it idiopathic, neuromuscular?
    I hope you are able to get this all taken care of for your baby soon. Good luck to you in the coming weeks and months.
    Mandy

  11. #11
    Join Date
    Mar 2004
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    Corina,

    If it were me, I would go to Cincinnati and see one of the doctors...maybe Dr. Crawford. I understand they do casting in Cincinnati and they would be able to put your son in a corrective cast ASAP while you decide what the next step should be. The nice thing about Cincinnati is that they also offer the VEPTR procedure which would allow for your son's spine to continue growing. It's a decision you will not regret.

  12. #12
    Join Date
    Oct 2003
    Location
    Utah
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    <<no your not i don't know what the problem is it just seems everywhere we turn there is miss information and khyler just slips through the cracks i just don't know what to do anymore!>>

    You also mentioned you have an appt in July - what doc is this appointment with? If its with Lenke, I would hope you have something else before then.

    I agree that you need to call Dr. Crawford's office (yesterday!) and insist that your little one is seen, sooner than later. Tell them what you said here - that he's fallen through too many cracks and currently has a 123 degree curve. Time is of the essence. Keep calling until someone will help you. Did you email/call my friend in Cincy? I know she would help you with whatever she can do. Be pro-active. Khyler's health depends on this. Good luck and keep us posted.
    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/

  13. #13
    Join Date
    Mar 2004
    Posts
    1,140
    Corina,

    This is what I would do..... I would drive three hours to Cincinnati and go into the emergency department and NOT leave until someone in orthopaedics sees Khyler - hopefully it would be Dr. Crawford. I would not leave the hospital unless he is in a corrective cast. If you have to stay in town a few days, there is a Ronald McDonald House right next to the Children's Hospital. Here is their website:


    http://www.rmhcincinnati.org/


    hugs,

    celia
    Last edited by Celia; 05-25-2006 at 04:29 PM.

  14. #14
    Join Date
    Feb 2005
    Location
    Virginia
    Posts
    48
    I want to ditto what everyone else is saying....your son needs support NOW. Your doc is saying that it is at a life threatening point and yet you can't be seen until July!!! Yikes! I agree that looking at Shriners or Cincinatti is the way to go...you really want to avoid fusion at all costs if you can. Good luck with everything.

  15. #15
    Join Date
    Mar 2006
    Posts
    29
    we have an appt. in cinncinatti june 20 with Dr. Do that was the soonest we could get in. things are still set for dr. Lenke in july too trying to get all the information i can. Dr. Lenke says that he won't be fusing Khyler's spine? the dr. in cinncinatti seems to agree about not puting a cast or brace on him at the moment. i talked to him told him the degree of his curve and he said that he didn't see where it would make a difference between now and our appt. Corina

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