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Thread: ever heard of this doctor?

  1. #1
    Join Date
    Mar 2006
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    ever heard of this doctor?

    hello-
    My son is 3 he now has a 98 curvature he was first diagnosed when he was 16 months old. We went through countless doctors trying to figure out what was wrong we first started to notice his chest sticking out when he was about 4 months old. we asked our ped he recomended an ortho surgion he said that it was just a normal groth problem and that he would grow out of it.
    we then saw another specialist when khyler was 16 months old he ordered an mri and a brace for khyler he wore that for quiet a few months and everything was going well he loved it. then the brace started to get too small and they made him another one. this one was unberable he would scream and cry every time you put it on him. when he had it on he would just lay on the floor and cry mommy help me!!!! it broke my heart. we took him back several times to adjust it and try to make it more comfortable. during this whole time i was never told about the degree of curve. Khyler also started to have trouble breathing he would make this strange noise when he was active or sitting. the first doctor we went to said he was doing it to get attention!the second wanted a lung capacity test. which they couldn't do because they have to sedate you for it and every time that khyler would get into a deep enough sleep he would stop breathing and wake himself up. so then they decided that he should have a sleep study and all the while he still can't get into his brace because they want to make sure his breathing is on track and deal with that first. they even talked about doing a surgery to expand his chest wall and make it eaisier for him to breathe but never mentioned surgery on his back except to say that when he was older he might need it. we decided to get yet another opinion and we took him to akron childrens hospital. they were astonished that my other doctors hadn't sugested surgery right away they said khy had a 98 degree curve and that he would need traction/halo and surgery right away. they also recomended a specialist at st. louis childrens hospital a Dr. Lawrence Lenke i was wondering if anyone had heard of him we've just gotten the run around so much and i want to make sure Khy gets the best care possible........Thanks Corina

    mother of Adam 10 Khyler 3 and Cayden 4 months

  2. #2
    Join Date
    Jan 2006
    Location
    near Philadelphia
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    1,260
    Corina,
    If you do a search on Dr. Lenke on this site you'll find several positive references to him -- he's very well known. He also has an impressive web site.

    Good luck,
    Chris

  3. #3
    Join Date
    Mar 2006
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    29
    thanks chris i did what you suggested there were alot of good things said about him.

  4. #4
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    Dec 2005
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    40
    I don't know anything about that Dr but wanted to let you know that my son had halo traction 7 yrs ago so if you have any questions regarding that please ask and I would be happy to answer anything I can. Cole is now 12 yrs old and has growing rods that he gets lengthened. He is doing really good now. We got to Childrens LA to Dr Skaggs.

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
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    1,010
    Hi Corina,

    I think I've emailed you before. Dr. Lenke is well-known for his treatment for teenagers and adults with scoliosis issues. I would suggest that you find a PEDIATRIC orthopedist who has extensive experience treating infants/toddlers with scoliosis. There is a handful of specialists that I would trust my child's life to. Even with a 98 degree curve, there are options for treatment that do not involve fusion. Fusion has its time and place, but not for small children, unless its an EXTREME situation.

    If you know his scoliosis is idiopathic (no bone malformations) and there are no other/underlying medical issues, I would suggest you contact Shriners hospitals. Two of the Shriners hospitals are well-experienced in casting infants/young children. The Shriners hospitals also do halo traction and then adjustable rod implants for extreme cases. There are other docs at other Children's hospitals who are strictly pediatric orthos who would be able to help, I'm sure.

    Please keep us posted. Email me if you'd like more information. boulderfam@hotmail.com

    My best,
    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
    Hi,

    If my daughter ever needed surgery, I wouldn't hesitate to take her to see Dr. Lenke ! He's an excellent surgeon. I know for a fact he doesn't do serial casting for infantile idiopathic scoliosis and I'm not sure if he's doing veptr. If you want to avoid surgery for the time being, I would see a doctor who does serial casting.
    Last edited by Celia; 03-27-2006 at 08:49 AM.

  7. #7
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    Mar 2006
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    celia
    what exactly is serial casting?

  8. #8
    Join Date
    Dec 2005
    Posts
    40
    I got your PM and my reply was way too long for it so i pasted it here for you.
    Stacey


    Hi
    Cole was in his halo for 3 months but traction part was only for 2 wks. He had the first operation to put halo on and they had him do traction in the hospital then was suppose to have a second operation to either remove halo or keep it on and also insert a permanent rod. He ended up getting an infection in his IV line in neck after few days so the second surgerywas put off for anotehr wk - that is why 2 wks in between. They ended up keeping halo on also as decided it would benefit Cole more to wear the halo for a few months but no traction after 2nd surgery. They put more hardware on him and halo to wear. He stayed in Hosp a a month total and went home with the halo for another 2 wks.
    He could move around with halo/traction tho a bit limited. Mostly sat in wheelchair and bed but could go for wheelchair rides while someone else moved the pole with traction and IV's of course too. It was much easier to move around once traction gone. He learned how to walk (first with walker then on own) also with the halo on.

    Yes he has two scars on his forhead from the screws where halo was attached. He has many scars on back also from back surgeries so that was nothing. But for you being new to all this it may seem major. They now are really not that noticeable-the forhead scars that is.

    His growing rods (very similar to titanium rib-if yo uhave heard of-Carmells son has it)s/b lenghthened every 6-8 months depending on growth. The first two surgeries Cole had after they were inserted were to replace and fix things on them and so was more invasive then just lenghtening. He finally had just a lengthening surgery the past two times (May 05 and Jan 06) and those surgeries were a breeze compared to the rest. He was released the same day but that isnt always the same with all Dr's/Hospitals. The Jan one he had no pain as they used a new painball tube that continuously released meds to numb pain site for 72 hrs and so it stayed in after home then I removed the small tube -very easy like pulling an IV.

    Hmmmm I hope I have not overwhelmed you with this info. Has your son had any type of surgery yet? Are you still trying to locate a good Ped Dr? I noticed Carmell tell you about trying a Shriners Hospital and I too would recommend that or any Ortho who specializes in Pediatrics. I had a similar situation of the run around when Cole was born with the scoliosis. Cause of insurance issues we at first went to a sports medicine Dr who did nothing at all but take xrays and tell us to come back. By the time he was about 16 months old and nothing progressing EXCEPT FOR HIS CURVE THAT IS, I finally was starting to write a letter to get authorized to a Ped Ortho when the Sports Med Dr finally referred us and so the Ins apprvd that (as he finally realized how severe and nothing he could do). we were sent to UCLA and saw the Head Ped Ortho their, he said Cole's curve was well over 100 degrees and he needed surgery immmediately or his health would be severely comprised-heart and lungs would be squished. So he fused part of Cole's back when Cole was 18 months old then again at 3 1/2 yrs he had to have more fusion as his curve just kept progressing. By 5 yrs old he sent us to Shriners in LA who suggested the halo and other stuff then sent us to Childrens LA where we currently go.

    Ok I am sorry I think this got way long-hope it makes since and ask anything else you may have. I wish you luck in finding the right Dr and right procedure for your son!!
    Stacey
    Southern CA[/COLOR]

  9. #9
    Join Date
    Mar 2004
    Posts
    1,140
    Hi Corina,

    Serial casting is just repetitive casts for a period of time in efforts to redirect the growth of the spine. Success (i.e., correction ) really depends on how flexible your son's spine is.

  10. #10
    Join Date
    Mar 2006
    Posts
    29
    Stacey
    thanks for the info. alot to digest. we have a appt. with dr. lenke on may 4th at st louis childrens. Khyler hasn't had any surgeries yet (except on his cleft pallate) our ortho dr. here in ohio seems to think that traction and surgery are our best option because of the strain on khy's lungs. but we will see what dr lenke has to say and go from there. thanks again Corina

  11. #11
    Join Date
    Jun 2006
    Posts
    1

    Smile Dr.

    Corina -

    My daughter now 10 was diagnosed with scoliosis at the age of 15 months. To make her past 10 years short, we did the casting - which didn't work becuase her spine was too flexible. At the age of 5 we started with rods in her back and they have not been successful for the mear fact that she has no fat on her body. She was casted after her surgeries and the casts rubbed against her and left open wounds with the instrumentation sticking out. This year we will be trying the rods again as her curve is 70-80 degrees. We go to a wonderful doctor at Johns Hopkins in Baltimore, Dr. Ain, and we live in Western New York. Even though she has been through so many surgeries (5), we wouldn't trade the doctor or the hospital for anything. The doctor and the hospital are a great factility. He specializes in pediatric orthopedicts. I myself have never heard of the doctors in St. Louis, but it never hurts to get more than 2 opinions on your sons condition. I wish you all the luck - it's comforting to know that we are not the only family who has the same condition.

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