My child’s original X-ray at 19 months old, 63 degree curve.
The above image of my child’s spine suffering from Progressive Infantile Scoliosis at age 19 months is shocking, but I have such amazing, happy news, you guys!
I can barely believe we have been on this journey for three and a half years to save my boy’s spine from dangerously curving and crushing his heart and lungs, like it was aiming to do when he was just 19 months old. Just a baby- my baby.
Three and a half years later, here where we travel for his medical care in Salt Lake City, Utah at Shriners Hospital for Children, we received the best news yet–
After beginning at a 63 degree COBB angle curve, Bex wore 10 Mehta EDF casts that were each applied while he was in traction under full anesthesia, then a Boston style brace full time for over a year.
He has been in casts and braces for more than half his young life and baby, it has ALL BEEN WORTH IT!!! Believe your eyes:
Bex’s current X-Ray. Wow.
Bex measured yesterday down from 63 to just 1.21 degrees!
He got a new night time only brace called a Providence brace and above is his X-ray in the brace. This is by far the lowest, best number we’ve ever gotten- I think he was closer to 11 or 12 degrees in the day brace.
To put this in perspective, 0 to 6 degrees is considered “straight” meaning no scoliosis! To be technical, he will be a higher number in an “out of brace” X-ray, but this is still huge news for him.
It means he’s getting better and better and is almost certain to avoid the surgeries that would have kept him from playing sports and deformed his young body forever by causing his spine to be fused at possibly 8 years old- that would have been his full height, his height at 8 years old! A completely different life.
Kids who start those surgeries very young often have many life altering complications, including pain and severely decreased lung function. The surgeries are life saving if you have no other option, but we found this option for casting barely in the nick of time, two months later it would’ve been too late.
To be clear for other IS families out there, Bex would not have received this cure by bracing alone, proper EDF casting was vital. What you need to know is to act fast, the best chance for a cure is by beginning casting under age two.
Call Heather, visit ISOP for all of the info, join the CAST group, make your first appointments and get your ducks in a row, this disease does not wait and has no mercy.
Bex could’ve been done in 3 casts, not 10, if we had not been mislead by our original doctors.
We are ever and forever grateful to Dr. Min Mehta who innovated this technique, Heather Hyatt Montoya for forming her non profit ISOP, creating the invaluable C.A.S.T. Yahoo medical support group, being instrumental in bringing this cure to the U.S…
…And steering us to the brilliant and humble Dr. Jacques D’Astous and his team (hi to Angie and Mike and everyone at Shriners!).
And a shout out to Scott, who measured and fitted Bex’s fabulous new brace. Awesome job!
Miracles do happen. Believe.
Love,
~ Bexon’s Mommy
I don’t know you. You don’t know me. But this post left me teary eyed. As a mother I can’t begin to imagine how you’re feeling right now. That sweet boy needs some celebration ice cream!
Thank you, Bren! He’s already had some and he will get a lot more! XOXO
Amazing. That first xray looks close to what Ellie’s looks like. The second xray brought tears to my eyes.
Thank you, Nicole, how is Ellie now? Is that her current X-ray? If so, I hope you consider casting as an option if you can. Sending love and good energy to Ellie!
Her current xray is the invalid one (sitting up). We will hear back from Shriners in SC and Children’s in Cincinnati on Tuesday with the dates of our appointments. Heather is helping us out as well by letting me know which doctors are properly trained and she helped me put together a little info packet with medical history (as much as a 7 month old can have) and pictures. I am going to go to both and pick which one I feel best about. Children’s in Boston told us to wait until December and come back for another xray but took no new valid baseline. He seems to feel it could resolve on its own but from what I’ve read a curve as severe as Ellie’s usually doesn’t just up and fix itself. I am willing to travel to get the proper treatment so that is what we will do. My brother in law is giving us his frequent flier miles which is awesome.
I think you’re right, severe curves just don’t seem to resolve on their own, not that I’ve seen in the few years I’ve been following many other families. You can’t go wrong with Heather’s advice, she is the woman! 7 months old is very young and that is wonderful for being able to catch those all important growth spurts. Liv was very severe in her curves very young, too, as you know. It sounds like you are 100% on the right track!
Have you done a spine and brain MRI or is she too young? My best advice is that it can worsen very quickly, you can always cancel medical appointments, but getting in can sometimes take months. If I had it to do over again I would’ve made those MRI appointments months sooner (we had to do 2, the first time they took only spine) and gotten Bex on the books for a casting date months sooner, as well. You are an amazing mother, Nicole! Go Ellie!!!
The doc in Boston wouldn’t schedule anything except an appt to see us and do another xray in December when she will be 10.5 months old. I am afraid of what might happen with the 9mo growth spurt since the 6mo one produced the big hump on her back. It was his opinion that she was too little for both the MRI and casting. We will see what Shriners and Cincinnati say. I hate doing nothing and sitting here watching it get worse.
I hear you, Bex’s curve happened so fast we could barely believe it. At one year old it was very slight to the naked eye and by 18 months it was shocking to look at. I wonder if anyone would give you a temporary brace while you wait? I can tell you that Bex’s doctor Jacques D’Astous, who is probably the most experienced casting ortho in the world right now since Min Mehta is retired- he will look at X-rays and give his opinion even if you aren’t planning to go to him for care, contact Angie Livingston by email at ALivingston@shrinenet.org and tell her I sent you, she is the Care Coordinator at SLC Shriners and works directly with Jacques.
Maybe his opinion could speed up the other doctors? Just a thought. He probably knows them from conferences, etc…
Thank you so much for your blog! I have twin girls that just got casted yesterday and they are 16 months old. If it wasn’t for your blog, and Heather, Angie at Shriners Utah and the Dr there, I would have been mislead as well. I was able to find a great Doctor close to home that studied in Utah. Now my girls are on the same path to straightness! They started at 31 degrees, and are holding at 15-20 so far. Thank you for your inspiring story!
Oh Jamie, you are making me cry happy tears! Wow, you are doing the right thing and I know your girls are going to be wonderful in their outcome. 16 months old is a great age to start casting! My best advice is to stay the course even if they get “stuck” in the middle of the casting process, that can happen sometimes where you see a big change in the beginning few casts and then they stay close to the same number for a while. If that happens, not that it will but if it does, just keep casting because one day soon you will get another big leap in the right direction! It appears that the in cast and out of cast X-rays get closer together in number the longer you cast. I’m so happy for you! It will all be a memory one day, I promise.
This is amazing! As a mother of a child with special needs, I understand all too well seeing your child go through something like this. I am so glad that this is turning out so well for you guys! Great news.
http://www.deannajsmith.com
Thank you Deanna! I think mothers of children with special needs are the most amazing people in the world. It is so difficult at times, but the beauty shines through when you least expect it and I think it makes us love our kids, if possible, even more.
Heidi,
Your’s is a wonderful story. I’m so glad that everything worked out well for Bex . What I take away most is that you took the time to research and seek out second and even third opinions. I’ve seen too many times where people have a blind faith in their physicians. Unfortunately, this often leads to poor outcomes. If I could recommend one thing it would be that people be pro-active in their or their families medical care. Learn the facts, learn what treatments are available and weigh the options. Be an advocate for yourself or your family and don’t ever be afraid to question your doctor. The good ones don’t mind . If you don’t get a straight answer, don’t be afraid to fire your doc….yes even in the middle of treatment .
Good luck to you and to Bex.
Warmest Regards,
Hal Board
Hi Hal, thank you, yes, I couldn’t agree more. Doctors are only human and we all too often take their word without doing more research. It seems that we WANT to trust them so we have the right answer on what to do, but that can be a big mistake- even when you have seen the “best of the best” in reputation, they can still sometimes be wrong, or they can even be money and ego driven. If we had listened to our first two doctors opinions much longer for Bex, he would be suffering multiple surgeries with complications right now. Thank God we found another answer in time.
Great news! Miracles can happen!
http://www.100lbcountdown.com
Thank you April!
Heidi
I loved your story about Bex, you are doing the right thing and believe me I know how difficult it can be putting your child into a brace every day and night, we did it for 6 years. The docs at Shriners are the best, the entire staff is amazing, care first, money second, what a concept. In this day and age when the talk of affordable health care rages on, one only needs to look as far as Shriners for an example of how it should be done.
My son Cole has scoliosis and has been treated at Shriners since he was 9 years old. Multiple castings and braces have worked wonderfully for him. I’ll never forget the relief I had when we took Cole to Shriners for a second opinion and they recommended bracing after another childrens hospital/doctors suggested immediate surgery, followed by a surgery ever 6-8 weeks for the next 6-8 years.
Shriners doctors were able to correct and maintain Cole’s curve until he was 15 and then was able to have his final surgery. In the end they corrected Cole’s double curve from being over 100 degrees to under 20.
He is now an active teen who enjoys swimming, downhill skiing, extreme rock climbing, hiking and being in excellent physical shape, all which would have been impossible without the care and treatment he received at Shriners Hospital in Salt Lake City.
Cole is making a documentary about his journey so others can benefit from his lessons learned; you can see a couple of his videos on YouTube here:
http://www.youtube.com/watch?v=pIWSpydGCmY
http://www.youtube.com/watch?v=CPy9WcHs0ao
If you ever have any questions or just need someone to relate with please do not hesitate to call, my number is 435-823-6171 or email me at lewis@gonzoshots.com. I’ll let you know when Cole’s documentary is done, it will take some time, he has over a hundred interviews of parents, patients, nurses and doctors to work through. We found great comfort in discussing our fears and concerns with others who were on the same journey as our warrior Cole.
Take care and give Bex a hug for me.
Lewis Cooper
Lewis,
Thank you for taking the time to write and tell me a little about Cole’s story- incredible! I love when slightly older kids get the benefit of casting, that gives me happy goosebumps to hear! I would love to give a shout out here on my site for Cole’s documentary whenever it’s done, please don’t hesitate to contact me. Marvelous! Over 100 degrees to under 20, your Cole is a warrior indeed.
Best,
~ Heidi
That really is amazing! I’m so happy for your son. Bless you for continuing to seek out the best treatment for your son and it looks like it has worked!
http://www.justshyofperfection.com
Thank you, Stephenie!
Truly amazing. Incredible what medical science can do, and incredible how strong and resilient Bex is! Congrats to all!!!!
Michelle, thank you, we are so happy.
Heya i’m for the primary time here. I came across this board and I find It truly useful & it helped me out a lot. I hope to present one thing again and help others like you helped me.