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Thread: Hello I'm new here.

  1. #1
    Join Date
    Apr 2005
    Location
    Anaheim, CA
    Posts
    3

    Hello I'm new here.

    Hi my name is Trisha and my son Tyler was officially diagnosed with idiopathic infantile scoliosis with a 50 degree curve at 9 months. Tyler will be one this Sunday the 17th. He is scheduled for his general anesthesia MRI May 3rd. Soon after that he will be fitted for his brace. My husband and I have no idea what to expect. This is all really scary, but I believe we are finally starting to handle it all. Can anyone share some experience with me. I'm so glad I found you all! I finally don't feel like I'm the only one.

    Thank you!
    -Trish

  2. #2
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Trish,
    I can't give you much advice, as my daughter is 16 and has Scheuermann's Kyphosis that she had surgery on 3/15/05. But, I can offer you lots of prayers as you go through this.

    Hopefully, Carmell will see your post and respond. Her son, Braydon, has had many scoli surgeries since he was an infant. She would be able to share lots of experiences with you.

    Lots of prayers to you.

    'til later,
    Nikki

  3. #3
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    Hi Trish

    Happy Birthday to Tyler for Saturday, I hope he has a wonderful day

    A few things that come to mind are:

    * As well as the MRI have they done all the other stuff such as Kidney tests to rule out all possible congenital abnormalities

    *If you type Serial Casting or Min Mehta into a search option or type it into the search function here. It may be a possible treatment option for your son, there are studies around on the effectiveness of serial casting versus bracing on very young children.

    *The first 24 hours will be the hardest. Your little man may be a little grizzly and upset, and I can't begin how hard it would be to put a child into a brace (heavens know how my parents did). But after a few days, your little man will begin to adapt (as kids have a remarkable way of doing) and'll be back to being a normal toddler. In the inital stages he'll probably need lots of encouragement, hugs, and a bit of extra TLC. And reassurance whilst he's getting used to his new body and new ways of doing some things.

    *Are they planning to put the straps on the back of the brace or on the front. When they're on the back, they can't be undone by little fingers. On the front, I've been told kids learn pretty quick to undo the velcro.

    *Something to keep an eye on will be the undershirt under the brace. It can get very hot and sweaty, and generally feel yuck when it gets like this. In Summer especially it needs regular changing.

    Alison

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Trish - Welcome to the board.

    I understand how overwhelming this is for you. Scoliosis in infants is not common. You are doing the right thing in having the MRI. When the scan is done, see if you can ask a pediatric neurosurgeon to read the actual scan (not the radiologist's report). Sometimes the neurosurgeon can see things that a radiologist doesn't.

    Alison is right in that he should have a renal ultrasound to make sure his kidneys are formed correctly and there is no obvious sign of renal issues.

    And, Alison mentioned Miss Mehta. She is an orthopedic surgeon from India (practices in the UK) who continues to use a form of casting to correct infantile scoliosis. There are two hospitals the USA who routinely use this form of casting. They are Shriners hospitals in Erie, PA and Salt Lake City, UT. You can read more about this type of serial casting here: http://www.infantilescoliosis.org/ There is also a Yahoo group specifically for parents who have infants/young children diagnosed with infantile scoliosis. The group is called infantile_scoliosis

    My son, Braydon, was born with congenital scoliosis. I'd be happy to share our experiences. Also, I have a webpage with some photos of Braydon so other parents can SEE that he is a happy and healthy child, with no limitations. I think it helps to know that this may be a life-long journey, but it doesn't have to be a bad experience.

    Good luck with the MRI. Please let us know how it goes.

    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/

  5. #5
    Join Date
    Feb 2005
    Location
    Virginia
    Posts
    48
    Hi Trish,

    My son also has infantile Idiopathic scoliosis. His was 37 degrees when he was diagnosed at 6 mos. We chose not to go the bracing route and have him casted at Shriners instead after I had done some extensive research. Anyway, lucky for us, his appears to be resolving on his own and the docs at Shriners are holding off on the cast right now. Anyway, I agree with Carmell that the Yahoo group she mentioned is a great place for you to get a lot of info.

    Good luck with everything.

  6. #6
    Join Date
    Apr 2005
    Location
    Portsmouth, RI
    Posts
    3

    Red face I'm 15 w/Kyphosis

    Hi, my name is Kayla. I am 15 years old and was diagnosed with a 75 degree curve. I have Kyphosis, I think its Schuriermans or something like that. Tell your little one I said HAPPY BIRTHDAY . I have a baby sister who will be two on August 28. She has a Hemangioma located on her hip. It is still growing little by little. Anyway, my mom and I are finding information on the surgery. My mom is sending an application into Schriners Hospital in Springfeild, Mass. The Kyphosis is pretty painful for me. I mostly hurts when I stand for over 2 hours, when I ride on a school bus, when I try to stand up straight, when I lay flat on my back and when I lay on my stomache. I'm not trying to alarm you or scare you. I'm just telling you what I feel when I do certain thing. Your little guy probably might not have all that much pain.
    Kayla McElligottKayla McElligott

  7. #7
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Kayla,
    My 16 year old daughter had an 88 degree schuermann's kyphosis curve. She would tell you the best decision she ever made was to have surgery. She had surgery on 3/15/05. Like you, she suffered from a lot of pain, continuous, and always trying to cover up her hump. She is now pretty much pain free and her back is absolutely beautifully straight. Her doctor also told her she should be able to play basketball next season. She was pretty excited about that, since she will be a junior in high school. We used Shriners Hospital-Portland, OR. They were absolutely wonderful. If someone would ask how successful Crystal's surgery was. I would have to tell them a complete success. She doesn't hurt anymore and her hump is gone. She has her self-esteem and poise back. It is a wonderful thing to see.

    Keep us posted on what is happening with you.

    'til later,
    Nikki

  8. #8
    Join Date
    Apr 2005
    Location
    Bellevue,WA
    Posts
    7

    Question

    Nikki,

    Quite a few of you mentioned Shriner's Hospital. I would like to know what are the reasons you choose this hospital other than no charge. I live in Seattle and my daughter of 12 yrs just saw a Pediatric Orthopedic surgeon who said my daughter is too late for bracing but too early for surgery(She has 35 and 30 degree curve and 4 out 5 on skelenten maturity). We are going to see another Pediatric Orthopedic surgeon from children's hospital of Seattle in June. I wonder if I should check into Shriner's Hospital in Portland, OR.

    I found this web site very helpful.

    Thanks,

    Jin

  9. #9
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Jin,

    Many parents choose to use Shriners hospital because of the quality of medical care for scoliosis patients. However, if you have good insurance (as I do) Shriners isn't the only place to find excellent care. Seattle Childrens Hospital has a very good scoliosis doc - Dr. Song. His reputation is exceptional. I believe you will be in great hands if you see Dr. Song and his staff.
    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/

  10. #10
    Join Date
    Apr 2005
    Location
    Bellevue,WA
    Posts
    7
    Yes, it is with Dr. Song we are going to see in June. He is very busy as I cannot get any appointment in May. I was told I may not be able to see him the second time. But I won't think about that for now.

    Jin

  11. #11
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Jin,
    Like Carmell mentioned a lot of us use Shriners because of the quality of pediatric orthopedic care they have. Crystal's doctor was Dr. Krajbich. He is the Chief of Staff at the Portland Hospital and also teaches a lot of the surgical techniques all over the world. We felt our daughter was in the best situation she could be in with him as her surgeon. We have excellent insurance. However, there were some concerns of what they would and wouldn't cover. The stress from having a surgery was bad enough, let alone worrying about what the insurance might not cover on a $150,000 to $200,000 surgery. One person I have heard, maybe Carmell remembers it, had excellent surgery and were refusing to pay for the rods that cost $25,000. We knew by going to Shriners that Crystal would get the best of care and we didn't have to worry about $20,000 to $30,000 of unpaid incidentials from the insurance.

    Any reputable children's hospital would be great. Do have the doctor/hospital find out from your insurance what they will/won't pay. Then you aren't alarmed at an unexpected bill. Our insurance would cover up to 90% of Crystal's bill. That was going to still leave us with $10,000 to $20,000 that we would have to pay out of pocket.

    If you have any more questions, please ask. My husband is also a Shriner, and was before we needed their services. So, we were aware of their services before we needed them. My biggest mistake was looking at another Shriner and telling him that my kids aren't crippled. He took my by the arms and told me that if we didn't get Crystal's back fixed, she could end up crippled from pain. That was the convincing moment to use Shriners.

    It wouldn't hurt to get several opinions on your daughters back. If you want to get an opinion from Shriners, that opinion will not cost you anything. There is also a Shriners Hospital in Spokane. We used Portland because we had family there. Portland is probably closer for you that Spokane.

    Lots of prayers for you.

    'til Later,
    Nikki
    Last edited by nikyergen; 04-26-2005 at 03:55 PM.

  12. #12
    Join Date
    Jun 2004
    Posts
    55

    Dr Song

    Jin,

    My son had surgery 2x last fall with Dr Song, (complicated kiddo... needed old rods removed, halo traction for two months, new rods and re-fusion). I would highly reccomend him. The way he worked with my son was awesome, he sat down and looked him in the face and answered all of his questions (he is 8 yrs old) and explained in terms he could understand the why's and wherefores. Even answered questions that really didnt have anything to do with the surgery itself... (like one Sean asked was Have you ever been scared?). The hospital itself is good with families, the nursing staff in particular was great. Another kiddo here, Trenton had surgery last month with Dr Song and they are quite pleased as well....

    Holler if I can answer any questions!

    Hugs,
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  13. #13
    Join Date
    Apr 2005
    Location
    houston,texas
    Posts
    11

    Your never alone

    Everything unknown or new can be scary. You are lucky to have your husbands love and support. Never be afraid to ask all the ?'s you need to make you feel comfortable. Mother's are usually right. Ask for a 2nd,3rd, opionion, what ever it takes. Most insurance will pay for your 2nd referral, etc...Good luck and stay strong!!!

  14. #14
    Join Date
    May 2005
    Posts
    18

    Smile Casts are not all bad

    Hi there.

    If you've read any of the other threads, then you may know that I am 19 and Live in the UK. I was diagnosed with Scoliosis at 2 months, and from the age of 12 months I have been in and out of plaster casts and braces. At first they do seem daunting but as Tyler gets older the casts tend to become less frequent. If you do look up Dr Min Mehta, she also suffers from Scoliosis and was my doctor for 18 years, but she has recently retired to private treatment. She was the first dodctor to pioneer casting on children and has helped hundreds of children across the UK. I have never been required to has surgery, and you should be lucky at the fact it was diagnosed early. Most doctors understand that parents will be scared at the thought of their child going into a cast, but after you see the results you will realise just how good they really are. I am now 6' 1 so don't think Tyler won't grow because he will. I think the only problem when I visit my hospital is the weight of my X-Ray folder becasue each year another one goes in and it gets really heavy. Hope this helps you.

  15. #15
    Join Date
    Mar 2004
    Posts
    1,140
    Wow !!! A full grown survivor of infantile scoliosis. I read in one of your other posts that at some points during your treatment you wore a removable cast ? When did treatment stop for you or are you still wearing braces/casts ? What is your curve at today ? You were treated by Miss Mehta, that's absolutely wonderful. You're a very lucky young man ! Do you have any x-rays you would be willing to show us ?



    Celia
    Last edited by Celia; 05-16-2005 at 08:12 PM.

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