Idiopathic Juvenile Scoliosis

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Steffee

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Hi Everyone,
My 8 year old grandson, Ryan, has been diagnosed with Idiopathic Juvenile Scoliosis. When first detected a year ago he and his brother (Kyle) had 20 degree curvatures so the treatment was wait and see. Kyle's stayed the same, but sweet Ryan's at his latest x-rays now shows after a 3 1/2 inches growth spurt has progressed to 30 degree curvature. The Neurological Surgeon is now recommending a body brace for 23 hours a day 7 days a week and until he stops growing (that would probably be 10 - 12 years from now). If the curvature was to progress to anything above 35 degrees or over the Surgeon would want to do spinal surgery and insert a rod in his spine to keep the spine straight. So that tells us from the neurology medical world there are only 3 treatments: (1) wait and see; (2) brace or (3) surgery. The brace has many side affects: muscle atrophy; breathing, heart and other organs affect by the compression of the brace; not to mention psychological issues wearing that darn brace with only one hour a day relief. It is also a known fact neither the brace or surgery totally correct the problem and it doesn't stop the curvature from occurring. It is estimated of the children diagnosed with Scoliosis 65% are Idiopathic Juvenile Scoliosis, in other words they don't know what causes it.

I was wondering if anyone has experienced with this problem and what treatment was used or has anyone been exposed to an alternative treatment? I just can't believe these stagnate age old treatments are all there is. If anybody can help this heart broken grandma I'd surely appreciate it!
 
Athough I don't know anything about what it is so I can't help that way I just want you to know as a grandma myself my heart goes out to you And I will say a prayer for you and your grandson. Let us know how he is doing:hug:
 
Hi Steffee, My mom read your info about your grandson and she said to pass along this information to you. My Mom had scoliosis as a child and didn't have surgery until she was 15. She said that they monitored her yearly. As far as my mom is concerned she does not believe a brace will stop the curvature it may slow it down but it will not stop it. She wore a brace for a year after her 2nd surgery to ensure her refusing was solid. She also said that was 28 years ago, but, she feels if his degrees have changed that quickly over the past year she believes he will more than likely require surgery or surgeries at some point in his life. The surgery is much less invasive and the recovery time is like night and day compared to 28 years ago. My mom said she would definetly get a second opinion from an "Orthapediac Surgeon" who deals directly with scoliosis and spinal disorders before making any final decisions. I also have scoliosis and my mom said she would never opt for me to wear a brace for that length of time without an absolute 100% guarantee that it was going to work. She feels this is to life altering for a child of this age.

I hope this helps, and that your grandson gets better soon :)
 
Hope*Brady said:
Hi Steffee, My mom read your info about your grandson and she said to pass along this information to you. My Mom had scoliosis as a child and didn't have surgery until she was 15. She said that they monitored her yearly. As far as my mom is concerned she does not believe a brace will stop the curvature it may slow it down but it will not stop it. She wore a brace for a year after her 2nd surgery to ensure her refusing was solid. She also said that was 28 years ago, but, she feels if his degrees have changed that quickly over the past year she believes he will more than likely require surgery or surgeries at some point in his life. The surgery is much less invasive and the recovery time is like night and day compared to 28 years ago. My mom said she would definetly get a second opinion from an "Orthapediac Surgeon" who deals directly with scoliosis and spinal disorders before making any final decisions. I also have scoliosis and my mom said she would never opt for me to wear a brace for that length of time without an absolute 100% guarantee that it was going to work. She feels this is to life altering for a child of this age.

I hope this helps, and that your grandson gets better soon :)
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Thanks so much for sharing your mom's experience. On May 19th. both Ryan and Kyle are going for a second opinion through the Clear Program supported by the Chiropractic profession. This program would involve chiropractic adjustments along with rehabilitative procedures including spinal isometric exercises, proprioceptive neuromuscular re-education, cervical and lumbar restoration, muscle and ligament rehab and vibration therapy. Their thought is the scoliotic spine compresses and rotates 3-dimensionally, so it must be tractioned and de-rotated in order to correct. In a study performed in 2004, patients with scoliosis ranging from 15 to 52 degrees curvature were monitored. After 4 to 6 weeks in the Care Program, patients exhibited an average reduction of 62%. There are many articles like this, compared to the results of the brace or even surgery. I just don't understand why the Chiropractors and Neurologist aren't taking to one another. Thanks to both you and your Mom for the feedback, what ever the treatment turns out to be, it just seems like a lot for a 8 years to have to handle. Thanks Again.
 
Steffee said:
Thanks so much for sharing your mom's experience. On May 19th. both Ryan and Kyle are going for a second opinion through the Clear Program supported by the Chiropractic profession. This program would involve chiropractic adjustments along with rehabilitative procedures including spinal isometric exercises, proprioceptive neuromuscular re-education, cervical and lumbar restoration, muscle and ligament rehab and vibration therapy. Their thought is the scoliotic spine compresses and rotates 3-dimensionally, so it must be tractioned and de-rotated in order to correct. In a study performed in 2004, patients with scoliosis ranging from 15 to 52 degrees curvature were monitored. After 4 to 6 weeks in the Care Program, patients exhibited an average reduction of 62%. There are many articles like this, compared to the results of the brace or even surgery. I just don't understand why the Chiropractors and Neurologist aren't taking to one another. Thanks to both you and your Mom for the feedback, what ever the treatment turns out to be, it just seems like a lot for a 8 years to have to handle. Thanks Again.
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You're very welcome, and I'm hoping for the best. The best thing that you and your family can do is research, and not jump to any conclusions :) Personally, my curvature is something like 23 degrees I believe, and my doctor is monitoring me once a year, with the thought of surgery not even crossing his mind. He said that he doesn't consider operating until around 50 degrees.

Anyways, if you have any more questions, just let me know :) My mom is pretty much an expert since she's dealed with this since she was younger than me.
 
I'm sorry to read that little Ryan. As a nurse, I can tell you they are using they same tested treatments. Research is on going. Be careful to research any untested treatments before trying them, as they can be harmful. PRAYING for Ryan, you and family. Hugs!
 
To follow up on our Ryan. All of his x-rays and MRI has come back with good news that there is no underlying reason for his scoliosis (no MDA, no nerve damange, no tumors, etc., and his lazy eye is just that a lazy eye). These Chiropractic doctors working with the Clear Program are so thorough we're sure the decision our daughter and son-in-law have made in going through this program before considering bracing is the right thing to do. When they told Ryan's Orthopedic/Neurology doctors they were pursuing the Clear Program as an alternative to bracing their response was 'well it couldn't hurt'. Could it be someday the medical and chiropractic world could start speaking to one another and the chiropractic part covered by insurance? That would be nice! Mommy Christine said he handled the MRI like a champ, he laid so still for over an hour and didn't fall asleep, our little champ!

So on Monday Ryan and mommy Christine will travel 3 hours away from home and stay with friends for 2 weeks while Ryan begins the first part of what could be a 10 year relationship. These first two weeks will be 9 hour days of intense therapy to slow down or stop the curvature. He will then go home with tools to do his exercises twice a day, unless they feel more intense therapy is still needed. It sounds like the doctors are leaving the door open that in Ryan's case that the curve only gets bigger when he has growth spurts. His curve is now considered on the high side of moderate and through the therapy they are looking for a 20 degree change, our fingers, toes, arms, legs every appendage that can be crossed is crossed.

The Chiropractic doctors also evaluated brother Kyle who was diagnosed by the Orthopedic doctors with a 7 degree angle, but the Chiropractic doctors diagnoses is that was the wrong diagnoses to start with. He does have one leg slightly shorter than the other which is becoming more apparent and he's leaning to one side slightly, but inserts in his shoes has taken care of that. Yeah brothers Good To Go!

This will be an anxious 2 weeks waiting to here Ryan's progress, can't wait to give him a big hug!
 
From someone who didn't know her "weird back" till she was old, if they can do anything to help the boy, do it. I've lived with a backache since was a about 10 years old--now 78. The older I get the worse the pain. It affects how you walk. I have ahard time with chiropractors--one leg is shorter. It's because your spine is out of kilter and they can only give temporary help. I know.
 
Update on Ryan:
Yesterday Ryan complete his 2 weeks on intensive Chiropractic Therapy for his Juvenile Scoliosis and his curve went from 30 degrees to 18.2 degrees in those 2 weeks. The doctors feel there could have been greater correction but Ryan's overall physical structure is considered small and his little body and muscle structure couldn't handled the more intense therapy. For the next month he will have home therapy, twice daily he will work with barbells and stretching exercises and he will work with the chair that pulls his spine back into place. Ryan's case is considered unusual from the get go because Juvenile Scoliosis is mostly seen in girls and he has a 'C' curve not the 'S' curve and any further improvement could be challenged with each growth spurt he has. He's only 8 years old, 4 feet 4 inches tall and the doctors anticipate he has 2 feet to grow, but unfortunately when the growth spurts will occur is unknown. He has to change the way he sits, plays on the floor (which this kids lives on the floor); he has a special seat to put in each chair he is going to sit in for any length of time and the doctor says the sooner he can get out of the car seat the better. The next step is to share this information with his primary care giver, which we all know Medical Doctors don't like Chiropractic Doctors, but this is the 2nd opinion Mom and Dad chose to use. He will be seeing a Nureologist in a couple of weeks who will determine if any of this could be affected by his lack of sufficient nutrition....I think I mentioned Ryan is a extremely picky eater. It's going to be tough on him but I know his Mommy (our courageous daughter) will be by his side with every barbell lifted and every stretch he has to do. I really don't know where she gets her stamina.
 
This weekend we went little Ryan's brothers Birthday who will be turning 11 tomorrow. This is the first time we've seen Ryan since he began is therapy for the Scoliosis. What a trooper, he took Grandpa and me into the other room to see his Therapy Chair and all the other equipment he will be using to do his exercises and when I saw them at first it took my breath away. He could see the tears welling up in my eyes and said don't worry Grandma it's not so bad and it will make me better. Do you love this kid or what! Then his mommy took me and her Dad alone into the other room where she had the body Brace stored. We couldn't hold back the tears. We are so proud of our daughter for searching for an alternative to wearing this brace, she is a wonderful mother. And still his primary care Doctors, even with the great results of the intensive 2 weeks of therapy, does not want to speak to the Chiropractors. Now that tells me there is really something wrong with our Health Care System. We had a wonderful day with the boys and they loved Grandma's Chocolate Chip Cookies.
 
Thats great Steffee, I'm so glad to hear that he is doing better :)
 
that is awesome news Steffee!!

The MD's may not want to talk to the chiropractors, but they sure can't deny that an improvement has been done. So glad to hear that they have been able to help both boys!!!

I had a very similar instance with my eyes a few years ago. My eyes had been progressively getting worse but b/c of lack of insurance and the cost of my childhood eye care professional, I chose to go to another eye doctor. As bad as I hate to, I went to the local wal-mart and used the one there. I'm so glad I did. He is a former military eye doctor and has seen just about everything. Very up front about everything. He told me what I had was not chronic dry eye (what my previous doctor had told me) but what I really had is something else (for the life of me I can never get it right to research it). The problem is that this new diagnosis is just that. Very new and not many understand it so they don't want to diagnose it as such. Due to lack of proper diagnosis, I had been in the wrong type of contacts for a few years which caused my eye sight to deteriorate faster than it would have normally. I'm hoping to get lasik done in the next couple of years so hopefully that will correct it all.

Prayers to those sweet little boys & their family!!
 
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