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Thread: Totally New to this

  1. #1
    Join Date
    Mar 2005
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    3

    Totally New to this

    My daughter Kirsten was just diagnosed with a slight curvature today. Her pediatrician noticed she was a little crooked as she stood during a check up for something else. We had the x-rays and he told me today. Kirsten is 6 years old. He said to wait and check her again in 6 months. I have no idea what the future will bring for her. If they catch it early enough and brace it when severe enough can this prevent ever needing the surgery? I, of course, am upset and fearful for her. She is fine with her diagnosis. Although, I am not sure she really knows what it means. Does anyone have any helpful tips or advice to someone new starting on this journey. I just feel so lost because there is nothing to do but wait. Thanks!

    Erin

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
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    1,010
    Hi Erin,

    Welcome to the board. I know how overwhelmed you must be feeling at this point. Hang in there and take this one step at a time. Scoliosis is rarely an emergency so there's always time to research and find answers.

    Scoliosis in young children is not common. I personally feel that waiting 6 months is not a good, aggressive plan for her. If she were my child, I would get an appointment with a PEDIATRIC orthopedist who has extensive experience in dealing with scoliosis in very young children. I personally don't know of any scoliosis specialists in Las Vegas, but the Shriners hospital and children's hospital in Salt Lake City have exceptional docs who would be able to answer all your questions.

    Because scoliosis in young children is rare, it may be a good idea to do a full spine MRI to see if there is a cause for the scoliosis. Is there a structural malformation in the bones of the spine? Is there a spinal cord issue that needs to be addressed sooner than later? These are questions you should be asking. A regular pediatrician will not know to ask these questions, unless they have done their homework.

    Good luck and let us know how things go. I'd be happy to share our experiences with you, if you are interested. I also don't want to overwhelm you anymore than you already are.

    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/

  3. #3
    Join Date
    Mar 2005
    Posts
    3
    Hi Carmell!

    Thanks for the fast reply. There is one Dr in the valley who does the surgery according to the search on NSF. Fortunalty, he works in the office with a friends husband. I will be speaking to them in the coming week. We are also consulting a relative who is a chiropractor. Do you know anything about using one? It looks like you have been through a lot with your kids. Aren't there days when it just overloads you? How do you move on? I know what I have to face, but sometimes I just want to crawl back in bed and ignore it all. How do you remain strong in front of the kids so as not to scare them? Thank you for the advice on talking to a peds ortho. I was thinking of doing the same thing. It's always a good idea to get a 2nd opinion and as great as our peditrician is, scoliosis really is rare so how often can he have dealt with it. Thank you!

    Erin

  4. #4
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
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    515
    Hi Erin:
    I have three daughters, all with back issues. My 16 yrs old has Scheuermann's Kyphosis/Scoliosis and is scheduled for surgery March 15th at Shriner's Hospital. My middle daughter is 14 and has a slight curve and is a wait and watch. My youngest daughter has Scheuermann's Kyphosis/Scoliosis and wears a brace. I am finding in my search with my personal friends, that scoliosis isn't as rare as we are led to believe. I even found out that my oldest nephew has scoliosis, and I never knew this. So, rare, I am not so sure about that. Second opinion, most definitely.

    You asked about a Chiropractor. We tried one. We didn't have any luck with it. The only thing it did was relieve some pressure and pain, but didn't do anything for correcting the problem. Spent a fortune, beyond what our insurance paid them. I would get your second opinion from a Orthopedic doctor first. Ask him about a chiropractor, he may have one he recommends.

    You asked how you go on with your life. Our daughters were all diagnosed on October 13, 2004. All on the same day. Slam in the face. But, we picked up our pieces and are doing what the doctor told us to do. Even my child with incredible posture has a problem. That one was hard to take. I knew the other two would be diagnosed and what they would be diagnosed with. But, the middle daughter, who stands tall as she can and straight, that one was the tough one. But, we are going on with life, with God's help. All three of the girls play basketball at school and are very competitive. All three of them play post positions on their basketball teams, a rough position to play. They also work on our ranch, ride their horses, show sheep and cattle, rough house and all the other things kids do. Don't put a bubble wrap around your daughter. Treat her normal, she needs to lead a normal life.

    The day the girls were diagnosed was an overload for me. But, we choose to use Shriner's Hospital and have an excellent doctor there. They specialize in Pediatric Orthopedic Surgery. You may want to check on your nearest Shriner's Hospital. They are state of the art with these surgeries. I am keeping my faith in God and that he will guide the surgeon on the 15th of this month.

    You may be surprised as you talk to your personal friends that some of them may have dealt with this. I was shocked when I found that two of my friends have kids in braces or had surgery. You will also get a lot of support from these forums.

    How did we go on? Well, we lead a very busy life. We farm and ranch and have three teenage daughters that do sports. So, we really haven't had time to slow down and think about it. I keep waiting for things to slow down, but they don't. Which is probably better for me. To top all of this off, our daughter is having surgery in 10 days and we just moved into our new house this week. So, still don't have a lot of time to cogitate about surgery. I don't sleep much a night right now, because that is the only time I slow down. And, I worry and think about surgery.

    Hang in there. Get in to see a Pediatric Orthopedic Doctor. Shriner's Hospital has some good ones. The other reason we choose Shriner's Hospital is that our insurance wouldn't cover enough of the cost. Shriner's Hospital covers the entire cost of treatment. Whether it is a wait & watch, brace, surgery, or whatever. You just have to pay for your expenses to get there. Gas, food, lodging. I was amazed that I will not see a bill for surgery ($250,000). Now, the kicker. My husband is a Shriner. We never even thought of using them, until the reality of the bill hit us. How were we going to pay what the insurance didn't pay, with three kids having the same problems. A friend recommended Shriner's to us. I told them my children weren't crippled. They told me that they would be if we didn't get it taken care of. Besides, Shriner's is an Orthopedic Hospital, not a crippled children's hospital.

    'til later,
    Nikki

  5. #5
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Thumbs down chiropractic for kids???

    Here is a link that will give you a thorough analysis of chiropractic so that you can be well informed:

    http://www.chirobase.org/
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  6. #6
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi again, Erin,

    You mentioned that there is a doctor in the valley who does scoliosis surgery, according to the SRS site. The surgeon NEEDS to be a pediatric ortho, not a general ortho. Your daughter is very young. It probably won't hurt to get an opinion from him, but I hope you would get at least one or two other opinions from PEDIATRIC orthos. Like I said before, Vegas doesn't have a well-known population of ped. orthos. to choose from.

    Like Nikki suggested, Shriners is a wonderful facility. The Shriners in SLC is top-notch! I would hope you can finally get some accurate answers about her scoliosis so you know how to move forward.

    About moving on... life continues to go on. We, as parents, need to keep doing everything else we did before - homework, soccer practice, dance lessons, school activities, work, family time, etc. For us, focusing on the positive things in life and all the fun things we like to do as a family makes the trauma back surgery and scoliosis less overwhelming. Every family has their own ways of coping, but, I think realizing that your child is more than just scoliosis... that's not who she is. My children have a medical condition, but they are much more than that. They have great personalities and are such fun to be around. I don't want to minimize the stress and worries we parents have. Just emphasizing that there is so much more to life than "just" scoliosis.

    If you do make it to SLC, let me know. I'd love to meet up with you and see how you and your daughter are doing.

    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/

  7. #7
    Join Date
    Mar 2005
    Posts
    3
    Carmell and Nikki,

    Thank you so much for the great information you have given me. I did find a ped. ortho in town and he works in an office I trust. We are currently working on getting a referral to him, but this should happen fairly quickly.

    You are both so right that life should go on the same. Kirsten is so much more than a medical condidtion. We are continuing as normal, but when things quiet down it's hard to stay focused. This to will get easier I am sure.

    Nikki, I will be praying for you and your family on the 15th. Carmell, I would love to meet you if I ever come to SLC and please if you ever come to Vegas let me know.

    Ladies, thank you for being there for me and I am sure others when they needed someone most. Thank you!

    Erin

  8. #8
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
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    515
    Erin,
    I am so glad you are going to see a specialist. I will keep your family in my prayers.

    God gave us this problem to deal with, so we will deal with it. Crystal has all her faith in God right now. Which I am so glad she does. She told me that whatever the outcome, because there is always the unknown, she will deal with it and go on with life. Such great words from a teenager.

    Anyhow, let us know how things go. I will let everyone know how Crystal's surgery goes next week.

    You are all in our prayers.

    'til later,
    Nikki

  9. #9
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255

    good luck Nikki and Crystal

    Good luck Nikki to you and Crystal! Sounds like your daughter has a great attitude. Let us know how it goes, we will be thinking and praying for you! ~Laura
    30y/o
    Upper curve around 55
    Lower curve around 35

  10. #10
    Join Date
    Mar 2005
    Posts
    8
    Hi , I am new to this site and hope I am doing this right. My son Brian was diagnosed a year and a half ago with scoliosis. It was a slight curve 15 and we have checked it every six months. I went last week and they said iot progressed to 20 degrees and we would need to brace him with a boston brace. They had no brace to look at or even a picture of one! Thanks to the internet I was able to do research on my own.
    My son is soooo upset he couldn't stop crying, he is 9 years old. He doesn't like to have a tag in his shirt never mind have to were a brace.
    We are going for a second opinion, but I am so worried that he will go through all this bracing for nothing. What age do boys stop growing? I have read alot about girls growth stoping after puberty but not boys? We are very confused at this point and NO ONE I know has scoliosis. I feel like we are really alone and am glas I stumbled on this site.
    Please let me know if anyone has any answers.
    Thanks
    Laura

  11. #11
    Mary Lou Guest
    Laura,

    I'm sorry to hear about your son. Please know that you are not alone in this journey. You will find that family/friends just won't understand what you are going through. They try their best to be supportive, but only those of us who have been there understand completely. Feel free to ask us anything on this forum. You are always welcome to send us private messages or e-mails also.

    Like you, I know when girls usually stop growing, but I can only guess at when boys stop growing. Boys usually don't start puberty until a few years later than girls and I know my nephew is almost 18 and he seems to still be growing. Your son's curve is very low and I would think he would have a good if not great outcome if he wears his brace as instructed. It won't always be easy, but you will get through this.

    Mary Lou

  12. #12
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Laura,

    Welcome to the board.

    You mentioned Brian was diagnosed 1.5 years ago - did they tell you if his scoliosis is idiopathic (no known cause) or congenital (some kind of bone malformation causing the curve)? Has he had any other tests to rule out other causes (i.e., MRI, CT scan, etc.)? These would be very important since scoliosis in young children is not common. Sometimes there is an underlying cause (i.e., a spinal cord problem, or neuromuscular problem, etc.). Does he have any other medical issues that would contribute to a scoliotic curve?

    I hope the second opinion you are getting is with a PEDIATRIC orthopedist who has extensive experience treating young boys with scoliosis. Bracing has mixed opinions in the orthopedic community. Some feel bracing is not useful enough to warrant recommending it for most patients. Many feel that bracing is to appease parents, who want them to do SOMETHING for their child with scoliosis. These thoughts may not be rational, but they are real. If I were in your shoes, I would be writing down a list of questions for the ortho. Write them down in priority order so you can make sure all your questions are answered. Write down things like what kind of scoliosis? What part of the spine is curved? What are the statistics for other children in similar situations? etc.

    My son is also 9yrs old. He was born with severe congenital scoliosis and has had a variety of surgeries. He is doing VERY well now. I know how hard it is for these little ones. This is very scary, even for us parents! Hang in there. I think that once you understand what is going on, completely, with Brian, you will have a little more peace of mind.

    Braydon continues to have surgery every 6 months to lengthen the rods that are in his back/chest. Once he reaches skeletal maturity (anywhere from age 16-19-ish) they will likely do a full fusion surgery to stabilize his spine. Doesn't sound like much fun to me. I continue to pray that medical technology will come up with something better than a "stabilization" surgery when he gets to that point. Brian may continue growing into his early 20s. Boys are harder to predict skeletal growth with than girls. I believe they measure the growth of the spine with Risser scores. A Risser score of 5 means the growth plates have closed and the patient is near or at full skeletal maturity. A Risser score of 0 (zero) means they have lots of growing to do. They can measure the Risser by looking at the growth plates of the hips.

    Good luck with everything! 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/

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