Bexon’s Story

Bexon’s Story- Short Version

Progressive Infantile Scoliosis

Progressive Infantile Scoliosis- my son Bex’s X-ray at 63 degrees, age 19 months.

Bex rib hump

bex back before cast 9

Bex’s back after 8 casts.


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Crooked Love

by Heidi Ferrer

My baby didn’t know it but his spine was trying to kill him. This is the story of how the Internet saved my baby’s life.

Google. His life and spine was saved by Googling.

I know.

My child has, to be clear, the most difficult orthopedic condition to treat in children and one of the only potentially fatal conditions in babies other than cancer.

Their spine is like a train out of control, dangerously curving to crush their heart and lungs.

Look, I have to tell you this fast because it may help another baby. It may help your baby. This is important work and kids are falling through the cracks every day. We are going to change that forever. Period.

We didn’t notice a curve in Bex’s spine until he was almost a year old. It looked like basically nothing. We thought we should ask his doctor. She was out on maternity leave. On the “well baby” check-up at just over a year, Bex was sick and the doctor did not remove his t-shirt in the room.

This was Jenny McCarthy’s pediatrician, at least at one point, and also Gabrielle Reece’s. He’s been on Larry King Live. We felt like we were with the best. The Best of the Best, The Best in the West

The curve looked so slight at this point that we forgot to ask about it, we were much more worried about his high fever. We didn’t know what a monster this condition is.

It’s a monster.

But something happened earlier. Bex has a sacral dimple above his butt. It’s tiny, but it can be an indicator in some, but not all cases of a need to check out the spine, etc. To look for tethered cord, Chiari malformation, etc.

What you also want to look for is a rib hump, or uneven ribs, but I’m getting ahead of myself. (It’s not a muscle build-up on one side.)

Look: We showed his pediatrician his spine a few weeks later and were sent to a celebrity friendly orthopedic surgeon in Santa Monica, CA.

This is where we began to get the dreaded Watch and Wait, the kiss of death with Progressive Infantile Scoliosis.

This guy acted like it was no big deal. Bex was about 13 months old, 25 degrees COBB angle in a lying down X-ray. Sitting or standing is more accurate, that number is usually higher.

Doc moron number one said come back in a month. Bex went from 25 to 28 degrees in that month. At this point he should have suggested casting, but no. Doc moron said come back in 3 months.

Bex was then 34 degrees in a lying down X-ray and only NOW he “kicked us up” to the scoliosis specialist.

Really? The first guy was not the specialist?

This doc moron number 2 who I like to call Doctor My Tummy Tells Me in Beverly Hills who also practices at Children’s Hospital LA.

Dr. My Tummy Tells Me (he said his tummy tells him when to do surgery on a child! I know!) – he ordered an MRI but did not mention or encourage a non-surgical alternative for our innocent, precious baby. When my husband asked about it, he was dismissive. Casts were not done in the state of California, he said. He didn’t do them. You’d have to go out of state.

To Utah! Gasp!

This guy, if we had followed his advice, would’ve ruined my child’s life with his advice. Caused my boy’s body to be deformed, caused him unimaginable physical and emotional pain over his lifetime.

Bex could’ve bee fused at full height by age 7-10 years old, full of metal in his back after multiple invasive surgeries, with permanent decreased lung function.

Now - years later- this second ortho is recommending casting to some patients, but he didn’t with us. And he knew about casting, back then. He knew.

If we had followed his advice, bracing, which does not usually hold progressive cases followed by years of invasive, painful surgeries with multiple complications and deformity and a totally different childhood and future for my precious innocent boy—

If we had followed his advice…

Thank God we didn’t follow his advice, even though we had excellent health insurance and the Best in the West doctors and instead we GOOGLED and found ISOP, a non-profit charity begun by Heather Hyatt Montoya, a Mama Tiger who was looking for a cure to save her own precious baby, beautiful Olivia…

Bex had 10 body/torso casts in the Mehta Method of EDF (Elongation, Derotation, Flexion) casting, which is done on a special three dimensional table that was invented by doctors Cotrel and Morel in France in the 1940s. India born Doctor Min Mehta came up with the pioneering idea of casting babies and young children while they are in the rapid growth phase, as the human spine grows 50 percent before the age of 2.

The rule of thumb for this treatment is to start early, preferably under age 2, (but I can tell you we’ve already gotten great correction over age 3), and it’s best to begin under 50-60 degrees for a complete “cure.”

That said, I know children who started at 80 degrees and are doing amazingly. It is the only cure for this condition, and while the casts seem daunting at first, they are temporary and removable. Once invasive surgeries are begun and hardware is implanted in your child’s body, there is no going back.

We are not anti surgery and would do it if it’s the best possible option at any point. But it should not be the first line of defense with this condition, if caught in time. And over a million dollars per child is the cost of that route, which we all pay for in insurance. Hel-lo, economy!

If your baby or young child has scoliosis, ACT FAST. Time is vital. MRIS have to be done before casting, and in some cities and countries it can take 2 months or longer to get in for those appointments. Get in the system, be politely pushy, get your ducks in a row.

You can always cancel medical appointments, just get them on the books. 80-90 percent of cases of IS self-resolve, but if you are in the progressive group you will want to act fast and you may have a complete cure.

A CURE!

A very beyond special mention for the brilliant Doctor Jacques D’ Astous and Shriners Hospital for Children, who along with ISOP have absolutely changed and saved our boy’s life and spine. Jacques is the guru and he works very, very hard to train other docs worldwide in this treatment.

Shriners Hospitals- why don’t more people know about them? The work they do to save children and transform their lives is simply stunning, it takes  your breath away.

So here’s the great news! As I write this, Bex is down from 63 degrees COBB angle (zero being straight) to— believe your eyes:

Bex's X-ray 1.21 degrees

My son Bex’s X-ray after 10 casts at 1.21 degrees.

–Down to 1.21 degrees in his current brace! 0 to 6 degrees in considered straight. He had about one year of all day bracing after cast number 10 and is now in a night time only brace. It’s so easy now, it’s a dream.

He will probably continue night time bracing for another year or more, but he’s brace and cast free during the day at age 5, starting kindergarten! It is a miracle and we are beyond grateful that our baby was saved from the jaws of death and pain and deformity.

And we get to help others.

And life goes on.

And love wins.

Love always wins.

But you knew that, about love.

Heidi Ferrer Bex

XOXO,

Heidi

And now…if you want to read more detail:

Bexon’s Story: (The Beginning, Longer version:)

Note: If you don’t have time to read this 12-13 page essay, you may want to scroll down to the bottom and check out the short videos at the end.)

by Heidi Ferrer

progressive infantile scoliosis pictureMy baby boy didn’t know it, but his spine was trying to kill him. This is the story of how the Internet saved my son’s life. Well, the Internet, a single mother, an 11-year-old girl, a retired female doctor from India, a French-Canadian doctor, and a group of kind men wearing tall, funny hats. How did this strange group of people come together? By a series of miracles.

It all happened fast—so fast, my mind was reeling, grasping to process everything. Upon hearing the news about my child’s condition, my head was dizzy and my knees felt so weak, I nearly passed out. A window had been opened to a terrifying world I never wanted to visit, let alone live in. It was as if my 18-month-old baby boy was lashed to the train tracks in an old-fashioned melodrama, while the train was hurtling toward him. If any of this group of people hadn’t been at the train tracks that day, my baby’s vital organs, his heart and lungs, would’ve been crushed by the oncoming train that was, in fact, his very own spine.

He has progressive infantile scoliosis, a condition that can be fatal before age three. But there they were: the single mom, the 11-year-old girl, the two doctors and the men in the hats. They untied him from the tracks and placed him safely back into my arms.

How do you express your gratitude to someone for saving your baby’s life? There just aren’t enough “thank yous.”

We thought we had good doctors. We thought our baby was safe.

But let me go back a bit, to when I was newly pregnant with my little boy. I don’t care what religion, race, or creed you are, every mother-to-be pretty much has the same moment. The one with God or the universe or whoever you believe in. And that moment is where you acknowledge in the pit of your stomach and your very cells, that, while most babies are born healthy…that yes, you do know that some pregnancies don’t end well. And yes, you do know that some babies and children have health problems. And in that moment you say to God or the universe, “Please don’t let any babies have health problems—ever. And especially not THIS one, please?”

You may have casually or fervently said to God, like I did, “God, let’s talk. I know that I’m resilient. But not for that. God, don’t think I’m too resilient, because I don’t even know how I’m gonna handle being the mother to a healthy child, so please, please, let this one be okay.”

I thought I did everything right. I read all of the pregnancy books I could get my hands on; I ate a lot of salads and organic food. I was over 35 and I chose to get the earliest genetic test possible, one called the CVS test, near the end of the first trimester. It was all good, “perfect scores.” At the end of my pregnancy, there was an unexpected glitch: I developed a condition called preeclampsia, in which very high blood pressure is a symptom. The worst case scenario of this is death to both mother and baby, another possibility is a stroke.

The worst didn’t happen for me because it was caught in time (by me). I swelled up like the Michelin Man seemingly overnight, so I decided to take my own blood pressure on a home cuff. Soon my wedding rings almost had to be sawed off my Italian-sausagelike fingers, and my regular OB-GYN was in China (yes, CHINA) when I needed an emergency C-section, but my baby was born healthy. He was a month premature and only 4 lbs. 13 oz., but he didn’t need to be in an incubator in the NICU.

We named him Bexon Lightning, or Bex Lightning for short, because we just liked the way it sounded. We called him the Milky Monkey and the Gorgeous Chicken. He was tiny and perfect, and his breath smelled like clouds.

Fast forward to a year later. Like most parents, our baby brought us down to Chinatown. My husband Nick and I were exhausted and had been through a roller coaster of joy and being dropped to our very knees by this small, delicious, and fiercely demanding being. Unlike most parents, we had endured the suicide of my father by gunshot only four months after our child’s birth. My dad had been in failing health, but the compounding factor was depression. Our family had loved and nurtured and grieved in the past year, but we were surviving, and each day our baby brought tremendous joy.

Bexon had started to walk at 11 months old, and he was a little wobbly, but that was only natural. When he was around a year old, we noticed his back had just the slightest curve, like he was favoring one side. To the naked eye, it looked like almost nothing, who among us doesn’t have one boob ever so slightly larger than the other or, you know, some other minor physical flaw? We just said to each other we’d bring it up at the 12-month pediatric appointment, no big whoop.

We forgot to even bring it up that day because our son had the highest fever of his life, 102 degrees, the night before, and his regular doctor was out on maternity leave. The head doctor there, a very reputable one, didn’t take off Bexon’s shirt in the visit because he was sick and the room was chilly. Our doctor’s office doesn’t do inoculations when the child is sick, so we said “Oh, we’ll just bring it up when we take him in for the shot when his cough goes away.”

His mild cough didn’t go away for weeks, but that was not so unusual with his immature lungs, as all babies have at that age. It was just at night, so we waited on the shot, to be on the safe side. When he was just over a year, my husband casually swung him by the doctor’s office for the inoculation, and that’s when he showed the doctor the slight curve in his spine. The doctor noticed the curve too, and referred my husband to an orthopedic surgeon who specializes in children, who was able to see our baby that same day.

That’s when Bexon got his first X-ray, which showed that his spine was curving in a “C” shape at 25 degrees (as opposed to zero to six degrees, which is considered straight).

This orthopedic surgeon, I’ll call him Dr. X, said to come back in a month for a follow-up X-ray. No major alarm bells were rung; my husband came home and didn’t even use the word “scoliosis.” At this point it still seemed like it might be nothing to really worry about, and life went on.

But the tracks were trembling. The train was coming for our boy.

One month later Bexon’s spine X-rayed at 28 degrees. Dr. X still didn’t seem alarmed, but he did mention the word scoliosis to me. I asked him what the worst-case scenario would be, and he said spinal surgery, like it was extremely common and not something to fret too much about. He assured us that he knew a great surgeon he would refer us to, a doctor we may never need, as Bexon’s spine could “self-resolve”—just straighten back up on its own. In fact, most cases of infantile scoliosis do straighten on their own, so he wasn’t wrong about that. What he didn’t tell us was that in the 10 percent or so of cases where it doesn’t, it can be fatal.

Oh, just that. Just fatal.

Dr. X said to come back in three months. We went through the holidays with our families a bit concerned but having no real clue that our child’s spine was on a crash course to crush his heart and lungs.

Now, maybe it’s just me, but I would rather have had this information than not. It’s simply not okay for parents to be treated like children and left in the dark when they are the only advocates for an innocent child’s health and survival. Doctor X had assured us that anything under 34 degrees would not even have to be treated. We live in a major metropolitan area, and we currently are lucky enough to have excellent health insurance. Our child, in his young life, has been seen by many chichi doctors, including one who has appeared on Larry King Live, discussing potential causes of autism, as well as others who have many celebrities’ offspring as their patients. We thought we were in hands that could be trusted. We thought our baby was safe.

Between that Christmas and New Year’s holidays, we went to Doctor X for a third X-ray. Our baby’s spine now measured at 34 degrees. He decided to now refer us to an orthopedic surgeon who specializes in bracing and spinal surgeries. I’ll call him Dr. Y.

Now, we were scared but Doctor X had made it seem like surgery was no big deal, and we felt if our baby needed it, we would have to do it. It was, of course, a horrible thought, but it looked like it may be the only option, and we held out hope that it may not be needed.

We met with Doctor Y, who is associated with an excellent children’s hospital, and he referred us to get an MRI done there of our baby’s spine. Now we were in the world of neurosurgeons and very sick children, having our 18-month-old son put under full anesthesia and his spine examined for many possible deformities. We worried, cried, and steeled ourselves, but his spinal MRI was ultimately clear, except for a fluid-filled cyst called a “syrinx.” We researched that online and it was very scary—if it suddenly grew, it could cause permanent nerve damage.

We later found out it may never grow and could just be an “incidental finding,” something we’d never have even known he had if the MRI hadn’t been done. We met with the neurosurgeon, who said he wanted one more MRI, to rule out brain tumors and other things too terrifying to think about. One possibility was that he could have a brain tumor “dripping” tumors down into his spinal column. This world was one I wanted to exit quickly, but we were now, like Alice, down the rabbit hole, lost in a health maze with no clear way out.

While waiting for the second MRI appointment, something had to be done about our son’s scoliosis. We got a call from the very nice assistant to Doctor Y, the second orthopedic surgeon we saw, I’ll call her “Jill.” Jill said the doctor would now probably “want to do something,” that “something” most likely meaning putting our baby in a brace for his back, to be worn 23 hours a day. We politely asked Jill how long the bracing would be, assuming it might be for a few months or, heaven forbid, even a year of his life. Jill politely informed us that it would be “until adolescence.”

That meant a decade or more of rigid bracing, in the hopes of halting his curve, 23 hours a day, followed by spinal fusion surgery. Oh, just that. Our jaws dropped, our brains reeled, and we thanked Jill, hung up the phone, and nearly hit the floor.

Why hadn’t anyone told us before that this was a possibility? Because they didn’t want to alarm us? Well, we were now very, very alarmed.

We went on the Internet, to our dear, beloved family friend Google. Within minutes we found out that bracing does not correct scoliosis. How could this be the first we’d heard of this? We were not told then but later found out that spinal “growth rod” surgery, which our baby would most likely have needed, has a 100% complication rate.

When the “hardware” is installed in the young child’s spine, “expansion procedures” are needed every six months. The “complication rate” can mean things like these “growth rods” breaking inside the child’s body and fusion developing where things are not supposed to be fused. Or…“spinal staples” can become detached and lost inside the child’s body and exploratory surgery must be done to locate them.

When I first found out the truth about my baby’s health, to be honest, I wanted to be checked into a hospital myself and put on a morphine drip. I wanted to be put into a medically induced coma until the worst was over.

Then we found a Web site, www.infantilescoliosis.org, a nonprofit organization, where we discovered that there is an actual, existing cure for our son’s condition—if caught in time. And we found out that while our first orthopedist “watched and waited” as our son’s curve progressed, his time was rapidly running out.

This brings me back to the single mom, the 11-year-old girl, the doctors from India and Canada, and the group of men with the funny hats. How did this odd group of people come together? By the grace of God. Without even one of these heroes, had my son lived, he would’ve likely faced years of surgeries and severe deformity.

Yes, severe deformity. These are not two words you want associated with anyone, let alone your own child. My first thoughts were of the movie The Elephant Man, which I had heard was brilliant but actively avoided seeing. I was afraid it would upset me too much. When I did watch it, it was one of my favorite films I’d ever seen. There’s a moment where a beautiful woman is kind to the lead character, who was a real person named David Merrick, which had never really happened in his life before.

This slayed me emotionally; I felt so happy for him in that moment. When I realized that my baby boy was facing potential severe deformity in his future…there really are no words. How do you process that? It’s almost too much for your brain to handle; it has to go into overload or find a safe place to hide. I’m glad I didn’t splinter off into multiple personalities, although I’m sure I have plenty of them to spare. I wanted to cry out, “HELP!” And I found it, which brings me back to the single mom.

Her name is Heather Hyatt-Montoya. Picture a lovely woman with the chutzpah of Erin Brockovich. Well, I don’t know Ms. Brockovich personally, but I mean the movie version with Julia Roberts, perhaps without the animal print push-up bras. Heather and her daughter Olivia’s story is worth a whole movie, but here is a slim, nutshell version. Heather’s baby girl Olivia had a spinal curve that reached an extremely dangerous 100 degrees before it was treated properly.

Olivia’s spinal curve had first been X-rayed at 39 degrees as a very young baby, but she also needed a procedure for her hip, which was treated by her doctors while her scoliosis curve continued to dangerously progress. After her hip was treated, she was put in a brace for her spine, which failed to stop the progression, as they often don’t in these cases.

Heather did extensive research, searching the globe for a cure for Olivia. After over two years she made contact with a doctor who could help her daughter, but he unfortunately lived in France. Also, he was close to retirement. Heather then made a decision to raise the money to move to France.

There was a doctor at the Shriners Hospital for Children in Salt Lake City with whom she had been corresponding, and he told her that this French doctor, Jean Doubousset, would be in Salt Lake City in June 2000 before he retired, where he would be receiving an award, and he would try to set up an appointment for Olivia. Not long after consulting with Dr. Doubousset, Dr. Jacques D’Astous, the amazing French-Canadian doctor I mentioned earlier, began to treat Olivia at Shriners Hospital in Salt Lake City.

Now, did you know that the Shriners Hospitals, the ones started by that group of men wearing the tall, funny hats, are absolutely free of charge? What they do for children astounds me, it just breaks my heart wide open, my heart cracks open like an egg and leaks gratitude all over the floor. The families are never charged one penny for treatment there, not for a state-of-the-art prosthetic limb and not for a “ten thousand dollar Q-tip.” They are able to give the children the care they deserve because they are not governed by privatized health insurance companies. The staff and doctors there are angels to children in need, and the Shriners are absolute saints for doing this.

Heather, being the force of nature that she is, started the infantile scoliosis Web site, and later, through the Scoliosis Association in the United Kingdom, (S.A.U.K.), she met Dr. Min Mehta, the brilliant female India-born doctor I mentioned earlier. Dr. Mehta had already straightened over a hundred infants and young children using a series of corrective plaster casts. The key, she found, was early intervention, before the curve becomes permanent and dangerous. Dr. Mehta has followed her patient’s progress for over a decade and they remain straight.

Dr. Mehta is now retired from practicing in England and travels to teach others, as she herself suffers from scoliosis and has dedicated her life to finding a cure. The Mehta Method/EDF (elongation, derotation, flexion) casts are a gentle, nonsurgical treatment that redirect the spine along with the child’s own period of rapid growth, like the redirection of a growing vine up a wall. The human spine grows 50 percent in the first two years of life, so that is the best, most crucial window in which to harness it in these cases.

I’ve been to Napa Valley, where we learned visiting the vineyards that the best quality wine grows through rocky soil. The kind that grows through simple soil has no depth of character. I thought, Oh! Just like people!

Within 24 hours of finding out the truth about my son’s condition via the Internet, my husband Nick and I were on the phone with Heather Montoya, getting vital advice, and within days we were accepted to Shriners, with Bexon’s first appointment set for March 30th. It was late January then, and our appointment for Bexon’s second MRI was not until April 1st. We still didn’t fully grasp how fast the train was coming for our son, but we were passionate and “politely pushy,” and the second MRI date was moved up into a cancellation slot.

The second MRI was all clear; the syrinx and the scoliosis were still there, but there were “no new findings.” Whew. It was extremely lucky that the second MRI was moved up, because we got a call that we could miraculously be moved in a cancellation appointment at Shriners.

I say “miraculously” because while Bexon’s curve measured at 34 degrees in an X-ray on December 29th, it measured at 61 degrees just six weeks later, the day his first life-saving EDF cast was applied. As soon as the cast was on, his curve was down to 38 degrees “in cast.” Had his appointments not been moved up, he could easily have sustained lung damage for life. The window of opportunity could have closed for my little boy.

Olivia’s doctor at Shriners Hospital, Jacques D’Astous, is now also my son’s doctor, and he was the first doctor in the U.S. to be willing to treat children early with these life-saving casts in Dr. Mehta’s Early Treatment Method. There are pretty much only two things kids can’t do when they’re wearing the cast. They can’t play in sand, because if it went down inside the cast it would irritate their skin (and we all know sand gets EVERYWHERE), and they can’t be submerged in water.

Yeah, it’s a little bit of a bummer that you can only do a full bath with your baby between cast changes every few months, but if it’s between that and my child having working vital organs, it’s not much of a toss-up. Sponge baths and hair washing is fine for a while; I’m sure he’ll love to surf when he grows up. I’m sure he’ll also jump off mountains without a parachute, but I’ll worry about that later.

The Infantile Scoliosis Outreach Program (ISOP) was established in 2003 in Denver, Colorado, and now, I can’t imagine living without the Internet, but 10 years ago that just wasn’t the case. If my baby had been born even just 5 years earlier, I shudder to think where we’d be right now. Probably standing over the train tracks, stunned senseless that we had to watch and wait helplessly as the train kept coming for our son.

I would’ve laid down beside him, held him tightly, and closed my eyes.

Shriners Hospitals began in 1922, and since then more than 835,000 children have been treated at 22 locations. Two of the first patients were a little girl with a clubfoot and a little boy stricken with polio. On our first visit to Shriners in Salt Lake City, we encountered a little girl with her clubfoot being treated in a cast, smiling as she walked down the hall. These charitable hospitals are on the cutting edge of orthopedics and burn care for children, and they’ve been doing this for these innocents since 1922. Can I say again—saints.

Bexon is 22 months old as I write this, and if you’re a female of any age or ethnicity, he’d be flirting with you right now. You’d probably be flirting back at him, although I’m not saying you’re easy or anything. The women in the store checkout lines always coo at him, “When are you comin’ back to see me?”

The boy can’t help it; it’s his destiny and probably (sigh!) my own personal cross to bear. He has wavy, honey-blond hair and big, brown eyes with long, dark lashes, not unlike a boy Bambi, and he has a big thing for leaves. Leaves are just it, man—they’re much cooler than stuffed animals or anything electronic. He already knows that each one is unique. They’re organic matter, just like him.

He also runs—fast. People watch him and shake their heads, saying things like, “No one can catch that baby.” It’s true. We just got lucky when we gave him the middle name Lightning because he runs like the wind, or maybe, as my Irish friend Britt says, “Angels whispered his name” into our ears, we had nothing to do with it.

You know, I never wanted to be a part of any support group of any kind. If you need that, your life must’ve really taken a wrong turn, that was my way of thinking. There’s a beautifully written piece by a mother who had a child with challenges, called A Trip to Holland. The author is Emily Perl Kingsley, and she describes what it’s like to have a child with a disability, using the analogy that you think you’re going to Italy, you’ve bought the ticket to Italy like everyone else, but you instead find yourself in Holland.

I love this piece. It’s so beautiful, it makes me cry, but I just never wanted to go to Holland. I’m all for chasing windmills, but I wanted to go to Italy. I DID go to Italy, I thought to myself, I had a healthy baby—what is up with this detour into Holland? Give me Paris in the springtime, I don’t care if Holland has Rembrants and excellent cheese.

Oh, if I really break it down, I probably qualify to be a part of about five hundred support groups. Everything from “people whose legs feel itchy when they’re anxious” to “those with an abnormal attraction to fried chicken fingers with ranch dressing.”

I think on some level I felt sorry for my baby that I was not a better mother when “the shit,” as they so eloquently say, hit the proverbial fan. I just felt like I couldn’t handle it. Not to be too precious, but I often wanted to vomit; I had nausea on and off for weeks. This is where the Yahoo medical support group called C.A.S.T. (Casts as an Alternative for Scoliosis Treatment) came into our lives, which was also started by Heather, the ISOP’s “Founding Mother.” Another mother wrote to me in an e-mail on this site that upon hearing the news about her own baby girl, she just wanted to “crawl into a hole.” Yes, I soooo relate.

It turns out that both she and I did a pretty good job advocating for our child’s health, so here’s to wanting to fall apart! Just because you feel fragile doesn’t mean you can’t be resilient. This mom’s little girl was diagnosed after my baby, and I gave her whatever feeble advice I had, and her baby is currently in her first cast and thriving.

On this e-mail support group, we communicate with parents in the U.S., India, the U.K., and all over the world, who are often scared and desperately searching for help. In Australia there were zero doctors applying this early EDF casting treatment until one family from Perth took out a forty thousand dollar line of credit to buy the proper table—a three-dimensional versus two-dimensional (flat)—system, that allows the casting to be done to maximum benefit.

Once the family purchased the table at their own expense, they donated it to their nearest Children’s Hospital in Sydney to help other children. In many ways it was already too late for their little boy, Nathan Garcia, who, at five years old, still had the body of a two-year-old. Because Nathan wasn’t treated early enough, his curve had stunted his full growth and started crushing his lungs and weak heart.

Nathan was born with hypoplastic left heart syndrome, a condition that is referred to as “half a heart,” and his scoliosis not being treated in time has caused him to go into respiratory failure. He is currently undergoing halo gravity traction, with bolts in his small skull, and as I write this, he is scheduled to undergo a spinal “hardware” operation. Yes, the one with the 100 percent complication rate.

An orthopedic surgeon treating Nathan was quoted regarding these casts, saying, “We’re seeing this treatment validated, and it’s only taken 40 years, but medicine’s a pretty conservative group at times.”

Hmmmmm…I’ll say.

Heather’s quest to help others has not saved her own little girl, now 11 years old, from multiple invasive treatments, lung problems, and surgeries. By the time she moved heaven and earth for her child and found out about casting, it was already too late. What boggles the mind is that young Olivia’s condition directly helped saved my own baby’s life. Olivia recently won the role of President Lincoln in her fifth-grade play; she was unanimously voted for by the other students. I just love the image of beautiful Olivia’s face, light emanating from it, wearing that long beard. Olivia rocks.

At the first moment of finding out the news about my child’s health, I wanted to crawl into a hole, but now I want to stand and shout from the rooftops. Thousands of other young children in the U.S. and in countries all around the world right now are lashed to the same train tracks of progressive infantile scoliosis that my child was, and no one is seeing the signs that DANGEROUS CURVES ARE AHEAD. Their parents may not even know that the train is coming. The cure is something that a lot of us played with as kids, and it costs almost nothing: plaster.

And guess what, insurance companies? Spinal surgery is expensive! So are scoliosis braces, I’ve heard they cost around three to six thousand dollars each (as of now), for potentially a decade or longer.

For those people who need braces and surgery, they are absolutely necessary, but how about a cure for some young children that’s made of simple plaster? That would peel some money off the insurance companies’ bottom line. It would be in everybody’s best interest. Why wouldn’t the least expensive, best thing be the standard of care for these babies in trouble? You have to ask yourself, who benefits from years of bracing and surgery? As they say, “If you want the answer, just follow the money.”

But thank goodness not everybody’s bottom line is money. Some people, many people, want their lives to have meaning. They want to soothe and lift someone from the side of the road, breathing life and sustaining love into these precious human beings. It’s going to take those people and more doctors who are willing to be trained to do the casting in Dr. Mehta’s method, and I believe there are many out there who are willing to do it. Anybody with half a heart.

I’ve recently heard that the Shriners have been weighing closing some of their hospitals due to diminishing funds. I pray this isn’t true. These hospitals cannot become extinct—they must survive to keep saving these children and transforming their lives.

So many people with diseases are desperately searching for a cure. There is already a known cure for what could’ve killed my baby, the word just needs to get out there to save others in time.

I just pray that we can all help untie these innocent children from the tracks they’re on and let them grow, like Bexon has the chance to now. Let them grow and let them run—fast.

As fast as Lightning.

 

Bex in black cast

The Man in Black (with white medical moleskin tape)

Here is the PSA for ISOP (The X-ray is Bexon’s spine before treatment, he is the boy smiling at the end)

This is Bex at age 19 months, less than 24 hours after his first cast was applied:

This is the non-profit website link to learn more: www.infantilescoliosis.org

76 Responses to Bexon’s Story

  1. Heidi
    Fantastic story! My 7 yo daughter Darcy has scoliosis (54 deg approx S curve) and has been braced since she was 18mths old. She has dodged the surgical option once and they hope to keep her braced til adolescence. Now I find out about this casting – I need to know more! Darcy is really flexible – and extremely agile. As we are in Australia – my heart dropped when reading Bex’s story about our lack of facilities. Ironically – our surgeon trains in the US – but primarily I suppose sees teen scoliosis patients – which is a totally different issue from what I read from youa nd your links. It is 5am here – I found you via a new Facebook friend (Kelli Shepherd) who found me via my blog in her search for info for her little girl. The internet is amazing isn’t it. I was reading my Blackberry at 1 am and have got up super early to view a full sized screen and send a few emails! Any info you could send me regarding options here in Australia – or in California – only a jump across the ditch for us! would be great – meanwhile I am off to read now.

    thanks so much for Bex’s story
    Louise

  2. Heidi Ferrer says:

    Louise,

    Hello in Australia, I’m so glad you found me! The first thing I want to tell you is to check out the website http://www.infantilescoliosis.org for more information- that is the non profit org. that was instrumental in bringing this treatment to the U.S. The second is that if you want to join the Yahoo medical group (it’s free of charge) for support, is is called C.A.S.T. – a great group of parents of kids with scoliosis.

    The third is that I believe Sydney’s Children’s Hospital once or currently has the correct casting frame for this treatment. It addresses the condition on a three dimensional level- including derotating the twisting or “corkscrewing” of the spine- that is key.

    There is one doctor in California who is doing this type of casting, but I do not know what his Mehta Method/EDF casting clinical training is, yet. We fly from CA to Salt Lake City Shriners Hospital For Children. Dr. Jacques D’Astous is Bexon’s doctor. He is brilliant.

    He was the first doctor in the U.S. to practice this method and is definitely one of the best, if not the best, doctor currently practicing it, worldwide. He also travels and does clinics to train other doctors- I can’t speak highly enough of him and everyone at SLC Shriners.

    If you consider this treatment, you want to go to a doctor who is properly trained in it and uses the correct “frame” or table. It is not the same as an American Risser cast.

    The EDF method was originally used to hold, but starting it on babies and younger kids is the best way to potentially cure. It is definitely an option for your precious Darcy, but because you would be starting a little older, it may be a better way to hold and reduce the curve and the rotation, and (possibly) not a complete “cure” to “zero” degrees.

    But honestly, we won’t likely get to zero, either. Every child is unique, and postponing and hopefully avoiding surgery makes it all worth it. There is a lot of hope!

    Please feel free to ask me any questions. Thank you for reading Bexon’s story!

    Warmly,

    Heidi

  3. Heidi Ferrer says:

    Louise- QUICK UPDATE!

    My CAST friends tell me there is a Facebook Group called Scoliosis Kids Australia.

    It was founded by Monique Garcia, Mother of Nathan Garcia. They are the family, I believe, who donated the casting frame/table to the hospital in Sydney. There is an ISOP/scoliosis video of Nathan on YouTube- with a news clip. Let me know if you have any trouble finding it. Hope this helps!

    Very Best,

    -Heidi

  4. heather says:

    Hi Louise,
    I would contact Dr. Angus Gray at the Childrens Hospital in Sydney. He was trained by Dr. Mehta, has an appropriate frame and should have a better understanding of Dr. Mehtas Early Treatment principles by now, as he had a few years to practice! Its my understanding that SKA no longer exists, so I would def. get on the CAST Support group and let us help guide you. Sincerely,
    Heather

  5. Jamie Boros says:

    Heidi,
    It is 3:23 am and I have been up for hours driving myself crazy trying to calculate my plan on getting Andrew to the right dr and hospital to treat his scoli correctly. I had never made it here to read Bexon’s story and thought, now is as good as time as any and I am so glad I did! Thank you so much for sharing your journey and giving me the confidence that I CAN get through this and I CAN get Andrew to the right place. I’m also thankful to realize that the scoliosis does progress so very rapidly. I knew waiting wasn’t an option but I didn’t realize so much could happen in just 6 short weeks. YIKES! I am already motivated and this information is just going to push me harder.

    Thank you for sharing yours and Bexon’s journey’s and for all the support you’ve already given here and on CAST.

    ~ Jamie Boros

  6. Heidi Ferrer says:

    Dear Jamie,

    Oh, you are making me mist over with happy tears! Thank you for reading Bex’s Story. Please feel free to pass it along, email it, print it out or share it with anyone.

    You CAN do it! And Andrew will thrive! Yes, with progressive cases of infantile scoliosis, it can progress very rapidly. Every child is unique, but that is info I truly wish I had much sooner.

    Thank you so much for making my day.

    Love,

    Heidi

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  14. Hi Heidi — it was so wonderful to meet you today. Seeing your baby’s beautiful straight spine just made the rest of my day. xo S

  15. Heidi Ferrer says:

    Hi Shannon! It was wonderful to meet you, thank you so much. We are very blessed.

    xo- H

  16. Sylvia says:

    Heidi,
    Just…wow. Your family’s story is amazing and you are an awesome advocate for your son. I randomly stumbled upon your blog from another site, intrugued by the survivor’s story post, then just kept on reading, and reading.
    I have scolisis, first diagnosed in 7th grade. My parents were advised to put me in a brace, and were told that the surgical option was inevitable. Do you remember the book “Deenie” about the girl in a brace? Well, I had just read it and was terrified about how my high school years would be spent stuck in a brace. However, my mom is kind of a non-traditional thinker. She took me for several opinions, and finally settled on chiropractic treatment. For two years, I had adjustments and electical muscle stimulation on one side of my back. This actually stopped the curvature from progressing, and helped reverse it a little. I am not completely straight, I still have an “s” curve where my shoulder blades and hips aren’t totally symmetrical, but I think I’m the only one who can see it. I don’t recall my exact measurements, but I think at one point the upper part of my S was at 21% and now it’s at 11%.
    Anyway, maybe this information can help some of the parents with older children who are past the cast solution. Or for maintenance on older children who were previously straightened wit a cast.
    Best,
    Sylvia

    http://www.on-my-last-nerve.blogspot.com

  17. Sylvia says:

    *Just to clarify, I don’t think my scoliosis is the same as your son’s or other infants, but I wanted to share my story as a resource for parents of older children who may have ended up on your website while searching for a solution.

  18. Heidi Ferrer says:

    Sylvia,

    Thank you for reading Bexon’s Story and for your comments! I just want to clarify myself that I think many chiropractors are amazing. However, in a case of Progressive Infantile Scoliosis like my son’s, there is no way they could’ve cured him or reversed the curve. The casts did that.

    BTW, a chiropractor saved me in my 20′s from something totally different- systemic yeast- and she is forever in my heart. I’m so glad your Mom did the thing that worked for you!

    Love,

    ~ Heidi

  19. Amy says:

    omg, I am constantly telling my hubby how exciting it is that we live in a world where we can watch tv, say, “Who’s that guy?”, go to imdb.com and figure out who he is and where we’ve seen him and everything he’s ever done in his *whole entire life* and not have to stay up at night wondering whatthatguy’snameis…all thanks to this thing called the internet… Your story is a REAL example of how wonderful the internet can be and how we can connect and help each other. Thanks for the uplifting read. xoxo

  20. Pinar says:

    Dear Heidi,

    It’s a big happiness to know you. I found your blog while I was searching for Jenny Joseph’s poem, the one narrating that she’ll wear purple when she gets old. And this poem I encountered with while searching the lyrics of Gogol Bordello’s song, “Start wearing purple”! So, your words about internet, I totally agree.

    Bexon’s story is one of a kind and I am so happy for you had the chance to get a cure. One thing may be seen as negative in our lives however has the greatest positive impact to whole, including us. Many many people reading Bex’s story may save their children, also about this Shriners, I have never heard of them actually but now I just feel thankful to them.

    You and Bex are such inspirations to whole world, bless you,

    loves, Pinar.

  21. Heidi Ferrer says:

    Dear Pinar,

    You are so right, sometimes the most painful things cause us to grow the most, and give us a chance to share our experiences to possibly help others. This makes us lucky.

    Thank you so much for your beautiful, kind words!

    Love,

    ~ Heidi

  22. Amber Scholl says:

    Heidi,
    I just want to thank you and your husband (I think that is who gave me some advise on the FB group) My sons curve was found in early June & after 3 months is progressing. He is now just shy of 19 months old. We are now in the process of trying to get him to Salt Lake City for an EDF cast ASAP. He was measured at 35 deg standing on one foot :( really how do you X ray a baby? Then again 2 min later at 29 deg both feet on ground but weight only on one foot :( Your sons story gives me so much hope! You expressed so many of my feelings I can’t get out. Here’s to hoping my little man has as much success as yours!
    Amber

  23. Heidi Ferrer says:

    Amber,

    You are so welcome, you are doing the right thing by looking into going to Dr. D’Astous at SLC! You will love him. He is heaven sent, as is Shriners.

    Have you done an MRI yet? If not, I would get in for one quickly, as most doctors need it before casting. Ask for a cancellation spot if you can.

    You can always “get your ducks in a row” with these appointments as I like to say, because you can cancel them later if you don’t need them. Sometimes it can take a while to get in, depending on the hospital, etc.

    Nick says he thinks you have Angie’s info. Feel free to email me privately with any questions, also you probably already are on CAST on Yahoo (the cast support group). I’m not on every day, but you will get a ton of great info from there.

    Very best of luck and hang in there!

    Warmly,

    - Heidi

  24. I have not know any children with this, but I used to work with a woman who had had such severe scoliosis that surgeons had fused her spine & inserted a metal rod when she was 17. At 39, she was completely inflexible, had to sleep in a special bed and on cold days could actually feel the cold metal in her back. I am so pleased that this option exists now – I wonder how different T’s life might have been if she’d had this option in childhood. Thank you for sharing Bex’s story.

    http://www.EarleyDaysYet.blogspot.com

  25. Susan Rae says:

    Heidi, found your blog via the Blogess. Amazing what you have gone through and what you are doing for others who might find themselves in your situation. I have met my share of incompetent doctors, and it is terrifying as a new parent. Good luck with everything you are doing, and I will share your blog with my contacts in case anyone else has fears our doubts about their precious children. All my best.

  26. Brandilynn says:

    Heidi

    Bex’s story is so inspirational! i actually found your blog while looking up Tar pit pictures and seeing Bex and you all at the Museum! How amazing to see his before picture and then to see him standing up near that mammoth!! You are an amazing person and mother that Bex will forever be grateful for. The continued work and word spreading you do is amazing. I am a pre-medical student and have a 3 year old doing it on my own. I have lots of health issues and my daughter has a low immune system…totally not the same but seeing other parents go to the ends of the earth for their children always gives me faith that the whole world isn’t going down hill. We do this alone just her and I. I have known several adults with scoliosis and have seen the end effects and how life just dwindles down. You are so amazing.

    In my heart,
    Brandilynn

  27. Tallye says:

    Shriner’s is a wonderful, wonderful place. Were it not for them, my son would not be able to walk at all. His gait is a funny one, but it is his. Others see his differences, but I see our miracles. Thanks for sharing.

    http://www.breathechick.blogspot.com

  28. The James says:

    Wow. Just wow. Thanks for telling your story.

    My first wife had scoliosis that only became apparent later in childhood; she wasn’t crippled, but the curvature was obvious out of street clothes. I had no idea that it could begin this early, or progress so quickly.

    Now, our oldest son and his wife are about to have a baby, and I’ll be sure they know. Thanks again.

  29. Brigita Cornwell says:

    Hi Heidi,
    Greeting from Canada! So glad we found your website and YouTube channel.
    Our son Jacob (going to be 4 y.o. in September) has scoliosis. He looks so much like Bexon! Now Jacob has his cast #6. He started with 70 degrees, now he is at about 20.
    We are so thankful to University of Alberta, Stollery Childrens Hospital for all the care. Dr.Mahood is amazing.
    Wishing all the best to you and your family,
    Brigita

    • Heidi Ferrer says:

      Hi Brigita!

      Wow, 70 degrees down to 20 is incredible. It’s miraculous how this treatment works. I’m so glad you found casting, we feel the same way about our doctor- incredibly grateful forever. Yay Jacob, way to grow!!!

      ((Hugs))

  30. Clara Dominguez says:

    Hi, mi daughter is 10 years old, her scoliosis is 67, Dr, told me she needs surgery, but I found you, I need to know if she can qualify for this kind of brace, I wonder if we’re still on time for this kind of brace, I would like to know what will be my next step, Please HELP US!

  31. Clara Dominguez says:

    Hi, mi daughter is 10 years old, her scoliosis is 67, Dr, told me she needs surgery, but I found you, I need to know if she can qualify for this kind of brace, I wonder if we’re still on time, I would like to know what will be my next step, Please HELP US!

    • Heidi Ferrer says:

      Hi Clara, where do you live? Don’t wait! Yes, some doctors will consider putting a cast on an older child, depending on the situation. I urge you to contact Bexon’s Dr. Jacques D’Astous at Shriner’s Hospital for Children in Salt Lake City, you can at least get his opinion via email- I assume you have the X-rays on disc? Can you upload and email them or possibly Fed-Ex them?

      alivingston@shrinenet.org is the email for Angie Livingston, she is the head nurse there who can help you. Say I sent you. Also please get on the Yahoo medical group CAST and contact my friend Heather Montoya who runs it and tell her your urgent situation. Email me at girltomom@gmail.com with any questions.

      The casts could hold off the need for surgery for years. That is HUGE in this situation! Hope this helps.

      Love,

      Heidi

  32. Heidi
    I have been reading your blog for a month now. I was searching on Google for Progressive Infantile Scoliosis and came across your site. My son is 13 months and has a 59 degree curve in his back in the shape of a “S”. Your son has helped give me hope that one day my son will be on the road to a cure for his.I am so lost in all the diagnoses. One sheet we just got from his doctors say Kyphscoliosis. And that goes with the thought of him having Skeletal Dyspepsia as his geneticists thinks he might have.

    I was reading your blog a day after we got Chase (My son) brace. After reading that bracing isn’t effective as the casting.I did some more searching and came to the conclusion that we need a second opinion and fast.

    Thank you for sharing Bexon’s Story. You guys might of just helped my son by showing me that one doctor may not have the right answer, do your research and stick to what you feel is best.

    http://www.mika-lynn.blogspot.com

    • Heidi Ferrer says:

      Hi Monica,

      Thank you so much for your comment, I agree with you- 59 degrees in very high at 13 months. Is that in a sitting, standing or lying down X ray? I ask that because standing or weight bearing X rays are most accurate and the number is usually higher. I feel an urgency to tell you not to wait to find out if Mehta/EDF casting is an option for your baby. My best advice is to contact ISOP (www.infantilescoliosis.org) and join the C.A.S.T. Yahoo medical group for infantile scoliosis. If you have any problems, let me know. Heather Montoya will talk to you on the phone and she is the founder of ISOP, her contact info is on the website. She can tell you the best casting doctor near you and what to do next. Have you already done an MRI? Most casting docs will need this, usually a brain and spine MRI combined, before casting. Some of these appointments can take months to get in, depending, so just get the MRI and the casting first appointment with an experienced doctor on the books ASAP, you can always cancel them later, but I always say to get your ducks in a row, time is vital! I hope this helps, I just want the best outcome for your child because you really need to start casting under age 2 and that is how you can correct the spine by harnessing the child’s natural rapid growth at this age. The surgeries are very extreme and have many complications. Sending you love and good energy on your journey! Feel free to ask me any questions and the Cast group is wonderful, too.

      ~ Heidi

  33. Chase has had a MRI and some sono’s done to make sure it wasn’t congenital scoliosis. Everything came back clear. Our only other worry at this time is he might have skeletal dyspepsia. They thought he had that before the scoliosis even showed up. His head is a little big. He has been short all his life and that was another thing to point towards skeletal dyspepsia, now with the scoliosis or Kyphoscoliosis I have heard it as a diagnosis too. I am so overwhelmed with all his appointments. And my main goal is to not see him go threw what I had to with my Scoliosis. I was diagnosed with idiopathic scoliosis and had surgery same year. I keep hoping I will wake up and this will all just been a nightmare. People don’t understand how stressful and painful it is to see your child and only child go threw this. Every time they tell me anything about him at a appointment I just wanna cry. We got him a brace on Saturday. Brought it home and it didn’t fit. That’s when I started doing even more researching. And Everything kept bring back to your site. Heidi,telling your story is helping more then you know for a lot of parents. You and Bexon are what keeps me BELIEVING. I know every case is different. But its possible for my sons spine to stop trying to suffocate him with out growth rods or the ugly worst thing Harrington rods is what is keeping me driving for the BEST. I don’t hear a lot of bracing this young for main treatment and that scares me.

    Thank you so much! I will be getting a hold of heather asap.

    • Heidi Ferrer says:

      I must admit I don’t know about Skeletal Dyspepsia and how that would relate to casting treatment, the only thing I know for sure about that is that you’d want to find out as soon as possible so you don’t waste time and can move forward with the best option. Heather’s daughter Liv is quite petite, too, but she doesn’t have that diagnosis. I would really talk to Heather because she has so much knowledge. If you have any trouble reaching her, let me know and I will call or send her an email.

      I was completely overwhelmed the first few months of Bex’s true diagnosis. You are not alone! It was a nightmare. It felt like our world had turned upside down. The words like potentially fatal, etc…I can just tell you that I wish I knew then what I know now. He is fine and his prognosis is so good- but it took years of not knowing to get here. I wish I could give that peace to you, but you can get a lot of support from the online group Heather started, it saved me.

      One step at a time. Take care of yourself too, eat, sleep, etc. You are on the right track! You can do this!

      Love and internet ((hugs)),

      Heidi

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  36. Johann says:

    I just discovered your blog today, and read this story.

    Wow. Just. Wow.

    I’ve never met you, but you (and especially your son!) have been thrust into my very small circle of Totally Amazeballs People. I would be honored to meet you IRL and shake your hand some day. Keep up being you.

    –Johann
    @johndstearns on the Twitters

    http://www.spfdilstayhomedad.wordpress.com

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  38. Perfectly written! I can say with confidence that I felt/shared every emotion you put into this post. I thank God every day for finding ISOP. It was the first page to come up in my google search when I was trying to find information on why my daughter’s ribs seemed funny. I will do everything I can to advocate for anyone going through this, and to help raise awareness of this condition. Thank you for sharing your story!

    http://www.theinfantilescoliosischronicles.blogspot.com

  39. Juelz says:

    Hi I came across your site via The Bloggess and all i can say wow. Up until I read your blog I had no idea what Progressive Infantile Scoliosis was. I am soo happy for your family and the amazing progress your son has made. Thanks also for the insight. Praying for you.

    http://shugamama.wordpress.com

  40. Heidi,
    I just wanted to share great news with you.After getting a hold of heather, 3 weeks later we was in seeing Dr Hammerburg with Shriners in Chicago. Got even better news, well really couldn’t get better news for being in a brace and being 4 months after finding out he had progressive scoliosis his curve was the same it didn’t get bigger(It would of been even better if it went down even just a bit). Still at 60 degrees. OH hear is the best news ever and I am looking forward to seeing good stuff is we got 10 days till casting. How fast was that. 6 months after diagnosis and only 2 months in a brace. I feel that is quick for only finding out about Mehta EDF casting 3 months ago. It took some a month to just get him on the casting scheduled, Chases medical history is very long for being 15 months(EEGs,a acid reflux episode that made him turn blue thought it was a seizure, MRI,Genetic disorder)I had to track down all the records and keep on their butts to send. I wanted to scream when we finally got the call with the date of Nov 20th for his first cast. Great early Christmas present to his spine I say!We are filled with fear of the unknown with the casting and how the lil guy will react to it and we are filled with so much hope and excitement to be finally getting on the road to a straight spine and say bye bye to this curvy way. I pray with in weeks he will be walking after the casting. I am getting worried that he will be 16 months this month and not walking independently.

    I just wanted to thank you from the bottom of my heart, Bexon too. You will always be close to our hearts for being the first person I found that was so informational and such a great resource that got me to Heather who got my son to his new doctor. And I just had to share how close we are now to a good road to getting the best treatment for my son. We hope with every cast is a step forward away for surgery.

    :)

    With love
    Monica

    http://mika-lynn.blogspot.com/

    • Heidi Ferrer says:

      Oh my gosh Monica, it’s early in the morning here and I’m crying happy tears for you! Thank you so much, I’m so thrilled for you and go Chase! Yay! Big hugs. This means so much to me.

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  42. John and Kristi LaBarbera says:

    Heidi,
    My wife and I just came across your blog today. We are amazed to see how well Bexon has done with his treatment. We have a son Kellen, who at 5 months old we noticed a hump in his back. He was already going to physical therapy so we mentioned it to them. They then scheduled an X-ray and MRI which mesaured a 28degree curve so we were referred to a pediatric orthopedic surgeon after a long wait to get to see him we had our appt and his curve had reduced to 14 degrees. So we were told to come back in 6 months for a follow up. When we returned for our follow up x ray, the curve had gone from 14 degrees to 38 degree. That’s when we were told that we had to come back in a couple of weeks for casting, which was a big shock to us. Something we weren’t expecting! Now 3 casts later his curve is down to 9 degrees, and Kellen just got fitted for a providence brace which he gets in 3 weeks. We are so excited that there is a less invasive alternative for his condition rather than surgery. As much as casting has been a rough process it beats surgery. Thank you for sharing Bexons story as it is a true inspiration and so nice to know there are other parents who have been through this as most people have no idea how serious progressive scoliosis is and how casting and bracing can actually work. Your story is truly inspirational.

    • Heidi Ferrer says:

      Hi John and Kristi,

      Thank you so much for your comment, I’m thrilled to hear about Kellen’s success! We are so very lucky this treatment was available and that we found it in time. Be sure to shout your story far and wide, I know leaving this comment will help another family.

      Warmly, Heidi

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  48. Frances says:

    Dear Heidi,
    Your story is just amazing, what luck you’ve had in meeting so many talented doctors and avoiding surgery on your baby boy. He’s beautiful…
    I wondered if you knew of anyone I could contact as my baby Faye (7months) has just been diagnosed with scoliosis (now waiting to see if it is progressive). Thé problem is I live in France and if you think US docs are stuck in their ways, here they are dinosaurs :-) Wait and see, braces then terrible surgery is all they offer. My baby is so beautiful, full of life and has gone through so much already I can’t bear the thought of it.
    Do you know of anyone at Shriner’s who is linked to France?
    I know you’ll understand how desperate I’m feeling… you’ve been there.
    “Bisous” to you and your little bolt of lightning.
    Frances and Faye in France

  49. Frances says:

    Dear Heidi,
    Thanks so much for your quick reply. I’ll wait for our appointment on WED next week with an orthopaedic surgeon (surgeon oh yes now that’s scary!) and then go from there. I’m actually trying to get my thoughts together and stop panicking so the info you have given me is a good start and very precious. Have already joined thé CAST group but like you I’m not really an internet group person, I’ll sée later on…
    Thanks so much again. Will keep you updated.
    Bisous
    Frances ans Faye

    • Heidi Ferrer says:

      Frances, please email me privately any time if I can help, girltomom@gmail.com XX

      • Frances says:

        Hiya Heidi,
        Just to keep you updated.
        On Wednesday we waited for 1 hour and a 1/4 before the doc turned up and the appointment lasted around 5 to 10 mins (10 being a bit kind to the man). He is apparently run of his feet. However this is trivial info I do admit but just so you get the atmosphere.
        Anyway she does have infantile scoliosis although he never named it, it was written on a card we were given (I already knew that anyway). A lop-sided space between T12 and L1 vertebrae that has no apparent cause maybe an infection I caught during birth (although she was immediately treated with antibiotics and no infection was found for her at the time).
        However no MRI was booked, no angle was measured, there was said to be no rotation of the spine whereas she does have a big bump on the right side of her rib cage (strange I thought that was linked…) and no new x-ray was asked for just to check. We asked for a check-up in a month’s time and the answer was “no use, I’ll see you in 6 months, just forget all of this”. So there you go, I was expecting it so no surprise but our little Faye has still got a crooked back and maybe a timebomb sitting ticking in wait for a growth spurt where it could get out of order. If only I knew the angle of the curve…
        I’ve decided to contact Heather, I hope she won’t mind, to see if she knows of anyone in Britain or France who Faye could see for some more advice. I’m also trying to get hold of the Royal Orthopaedic Hospital near London UK, don’t know if they follow the Mehta Method though. I’m not saying he doesn’t know his job, I wouldn’t dream of it, it’s just we came out of there with virtually zero info. Waiting 6 months to see if it will get worse is pure purgatory!
        So there you go, you will now know your luck at having the Mehta Method at your door step and someone to turn to. Thanks so much for letting me turn to you Heidi, I’ll always be grateful.
        Bisous
        Frances and Faye

        • Heidi Ferrer says:

          Frances, your instincts are right on target, the wait and see, watch and wait, come back in a few months can be the kiss of death if it is PIS. Please do contact Heather and let me know if you have any problems reaching her. The rib hump is a well known sign of PIS and bracing can’t cure it, it has to be casting done properly in the EDF/Metha Method.

          I keep seeing do many families being mislead and then it can be too late, we all tend to trust doctors too much sometimes.

          You are on the right track!

          Love, Heidi

          • Anonymous says:

            Hi Heidi, I wanted to apologise for not giving any news for 6 months. In the end over here in France we had no other choice but waiting and seeing, it was nerve racking. Two days ago we went to see a surgeon who knew Min Mehta years ago, 1978 I think! Anyway, Faye’s scoliosis seems to have resolved on its own. We are so relieved, he did say it could backfire during the growth spurt when she’s a teenager but for the moment it’s stable! Thanks again for your support. Hope your lovely Bexon is doing well. Merci! Frances and Faye.

          • Heidi F says:

            Hurray! That’s the best outcome possible.

  50. christina says:

    I have a 3 1/2 month old girl that was curved since birth(planned home birth) and I felt it was because she was positioned improperly at birth and would get better.
    2 weeks ago I noticed bump on one side so o took her to pediatrician and she confirmed the curve we saw. But sent us to physical therapy because my daughter can be straightened into a non curved position.
    Physical therapist reports one hip is higher than other , and weakness in arm and shoulder on side opposite curve. And PT calls her curve severe. She suggested x ray
    My husband and I called pediatrician for a referral for x ray which was done today.. No results yet.
    What should I ask about when I get results?
    Is x ray enough? Should it be an MRI?
    This is all so scary. Especially the life threatening part you talk about. No one else is saying this…but that makes perfect sense! already her bowels seem to be all on one side and she has constant gas.
    Thanks for blogging about this!!

    • Heidi F says:

      Hi Christina,

      Yes, the X-ray is the first step. 3 and a half months old is young and that is great news. Babies are not cast that young, to my knowledge, but sometimes they will begin under age 1 in severe cases.

      If it is Progressive Infantile Scoliosis it will get worse, often rapidly and no physical therapy will cure it. Bracing usually does not really even hold progressive cases from getting more severe. The only cure is proper Mehta/EDF casting, if begun in time.

      There is still a chance that your child could self resolve, but the number or COBB angle on the X-ray will give you an idea. Anything over 25 I would consider very likely to be progressive and an emergency. Many parents begin casting under 25 and get better results with less treatment- basically, you want to begin casting as soon as possible. Hopefully under age 2 and under 50 degrees.

      Now, there are things like tethered cord that must be ruled out by MRI. Depending on your X-ray results, you may want to schedule an MRI of both brain and spine as soon as possible. Meanwhile, you can join the groups like on Facebook (Early Onset Scoliosis and Mehta Casting) and the Yahoo medical group CAST and get more parent advice.

      Surgery is the absolute last resort with this condition, you want to try to avoid that at all costs, unless there is no other option.

      So the steps are to get the curve apex number, then based on that, you many be referred for the MRI. Or they may watch and wait, just remember that it can progress quickly, so stay on top of it as you already are. My experience was that these appointments, both MRI and casting docs, can be booked out months in advance unless you get in on a cancellation wait list, that’s partially how the time can fly and you want to have your ducks in a row in the meantime.

      Good job being such a great advocate for your baby!

  51. Teo says:

    Dear Heidi,

    So Great, Thanks of your information.
    My one also having same problem, but in my country not provide this kind of EDF casting. I just find out for TLSO bracing. I will try it out. Hopefully would safe my lovely baby.

    • Heidi F says:

      Dear Teo,

      Hi, what country do you live in? What age is your baby, if I may ask, and do you know the COBB angle or degree of curvature? Shriners Hospitals sometimes pay for international travel. It can take only one family to get the proper casting table, it may be difficult, but it is worth it. If your baby has a severe progressive case, please act fast. Visit The Infantile Scoliosis Outreach Program at http://www.infantilescoliosis.org/

      Love, H

  52. Mary says:

    I am based in Ireland. My 9 month old son has scoliosis diagnosised 3 months ago. xray lying flat was 26 degree and RVAD 8. He is a thoracic curve to the left. We do not know if it is progressive yet. We have repeat xray this month which might give a clearer picture. If progressive I am aware due to all this brilliant information on the net and everyone sharing their stories that I need to act fast. This is where the problem lies here in Ireland. As far as I am aware there is no Metha EDF casting available in Ireland. Other parents have tried tirlessly with the help of ISOP to bring this casting to Ireland but feel they are hitting the head against a brick wall. I am now at the point considering moving to the UK if I cannot get the correct treatment in this country. Do you have any advice for me. I look at the pictures of your boy and I am amazed at the success of this non invasive type of treatment. Keep up all this good work. You are helping so many people.

    • Heidi F says:

      Hi Mary,

      I want to respond to your comment when I have more time, I promise I will by tomorrow. In the meantime, thank you for your kind words!

      Heidi

    • Heidi F says:

      Hi Mary,

      I’m travelling and just read your comment again, first of course, I do hope that your child is self resolving. If not, yes, I would move Heaven and Earth to get the right treatment in time and act fast. You can consider Shriners Hospitals in the U.S. possibly. The surgeries are quite horrible and you want to avoid them at all costs if you have a casting window of time. Sending you love and the best wishes! Find the groups on Facebook and also the CAST group on Yahoo that are run by Heather. Let me know if you have any problems finding them. The good news is your son is well within the casting time frame, under age 2 and under 50 degrees is when to start, the sooner the better with a severe curve. But I always say get your ducks in a row and make the appointments, it can take time to get in. XO Heidi

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