Infantile Scoliosis-Bexon's Update

Over the next few weeks(and hopeful many more)I plan to share stories written by moms of children with Infantile Scoliosis.  Like I said last Friday all I have ever wanted to do since Ryan's treatment is spread AWARENESS to parents, family, friends, doctors, ANYONE who will listen. My format for Fridays will be Infantile Scoliosis.  I hope you will continue to come and read my blog on Fridays. Share these stories if you  wish and please let me know if you should have any questions.

So just as I promised last Friday I have Bexon's update from his recent trip to SLC where his 9th cast was applied for Infantile Scoliosis.  His update is written by his sweet mommy Heidi.  Heidi is a screen and TV writer along with being a new Blogger/Vlogger at Girl to Mom.
Her blog follows their journey.  Read Bexon's updated story written by Heidi.


But first check out the amazing photos of before treatment and just recently.

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 humb, 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? Yes. I know. I am angry.

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.

DEAR DOC MTTM: It is criminal to make children suffer for a lifetime for YOUR profit. The information was out there and you knew about it. You disgust me.

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 is a creep. A frickin’ CREEP. Now he’s sending people to casting, but not before us. And he knew about it. 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…

SO! 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 has had 9 body/torso casts so far 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 Hospitals 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)—

Down to 14.6 is in his current cast, number 9!!! We have one more to go, so 10 total, and then bracing to hold, but 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.

Bexon and Heidi

XOXO,
Heidi