Saturday, May 25, 2013

Jackson = 1, Scoliosis = 0

As many of you know, this week was monumental for our family.  We knew back in March that Jackson was supposed to wear his 9th Mehta cast back to Shriner's Greenville to be removed on-site for x-rays.  We were told in March that if his x-rays were absolutely perfect during our May visit ... he would be casted for a 10th and final time on May 23rd, 2013.

However, this past Monday (5/19/2013) I received a highly unexpected phone call from Jackson's surgeon, Dr. Peter Stasikelis.  I was caught very off guard when my cell phone rang that afternoon and I heard his voice on the line.  He called to tell me that after reviewing Jackson's chart and previous x-rays, he wanted the brace maker, Dave, to see Jackson wearing his Mehta cast #9 before it was removed on Wednesday.  He said that (although he could not promise me) ... he had a gut feeling that Jackson's back was going to be straight.  He also told me that he had decided NOT to cast Jackson a 10th time if this was the case.  However, so many things must line up perfectly ...

1.  Jackson's cast must be appropriately sized to form his removable brace.
2.  Jackson must cooperate for his x-rays.
3.  Jackson's spine must measure 0 degrees.
4.  Jackson's cast must be in good repair to be used to mold a brace.

We needed a lot of prayer!

These were some TALL orders ... but we serve a BIG God!

*   *   *

On Wednesday, Dave (the brace maker) decided that Jackson's cast looked appropriate for constructing a brace.  We were ecstatic!  Jackson 9th Metha cast was removed (the two cuts you see in the photograph) ... and although it was broken in TWO places (toddler boy standard) ... it was usable for brace construction!  Praise God!  We love you "skateboard cast"!

Jackson's back looked awesome to the naked eye ... but only quality x-rays would tell us the results.  Unfortunately, Jackson REFUSED to cooperate for the x-rays.  He wasn't "misbehaving;" however, he thought it was a game to slouch, jump, and twist when told to "stand up straight and tall."  As you can imagine, we were upset.  The x-ray technician took two x-ray films, one standing and one sitting.  Neither appeared perfect.

Shortly after, Dr. Stasikelis asked us to step into his office.  He showed us Jackson's x-rays.  He could measure a 2.18 degree curve ... but there was a catch!  Using his tools, Dr. Stasikelis drew lines through Jackson's vertebrae and showed us that the "apex" (most displaced, scoliotic vertebra) of Jackson's curve had moved from T-11 to T-4.  Then, he explained to us that:  "THAT DOESN'T HAPPEN."  Translation:  The true scoliotic area of Jackson's spine was at 0 degrees!!!  The 2.18 degree "curve" was created by Jackson's lack of cooperation and tilted head (which could also be seen on the x-ray).  Justin and I held our breath.  Then, Dr. Stasiklis said the words we have been waiting to hear for almost 2 years:

"He needs to be closely monitored, but for the time being, Jackson is CURED."

Immensely happy.

Every emotion I have experienced on this l.o.n.g. journey coursed through my body in a single instant.  

Everyone went back into the exam room ... and while my mom and I cried happy tears ... Dr. Stasikelis went over brace instructions with our family.

A few moments later, Jackson was invited to choose his brace design in the prosthetics and orthotics area of the hospital.  He choose a bright blue brace with soccer balls and cleats on it.  He is quite excited about it.

*   *   *

We will return to Shriner's Greenville on June 7th to pick up Jackson's brace and learn about it's care.  He will wear this plastic, removable brace for 12-18 months, until he outgrows it.  However, he will now be able to bathe, swim, spill, and avoid general anesthesia every 6-8 weeks!

We still VERY MUCH need your PRAYERS!  Please pray specifically that this is a PERMANENT CURE for Jackson's spine.  Once in his brace, Jackson will be seen at Shriner's every 3 months for x-rays and a "brace check."  As with any progressive disorder, Jackson will not be truly "out of the woods" until he stops growing, around age 21.  There is always the scary possibility that Jackson will have to return to body casts or have spinal surgery in the future.  However, when treated early with Mehta casting ... the cure is "usually" permanent.  Let's live in the present and enjoy its blessings!  Right now ... today ... Jackson is CURED of Progressive Infantile Scoliosis.

*   *   *

Please share this link with your pediatricians (and visit it yourself):

Progressive Infantile Scoliosis (PIS) is a hugely under diagnosed childhood condition.  The overwhelming majority of pediatricians are unfamiliar with its detection and its treatment.  Most will delay a child's treatment and "observe" the curve until it's too late and the child requires a hugely premature spinal fusion.  Although it is rare (1 in 10,000) ... I know from our journey that it AFFECTS MANY FAMILIES!  If children are diagnosed EARLY and CORRECTLY ... they can be CURED on this awful deformity that was once (as recently as 2001) terminal.  Mehta Casting is a gentle and non-invasive approach with truly phenomenal results.  Spread The Word!

Here is a photo of non-treated PIS (very different than 'regular' scoliosis):

... And here are the photos of Jackson undergoing his successful treatment with Mehta Casting ...

At diagnosis, age 4 months (September 2010):

Prior to Mehta Cast #1 (September 2011):

Prior to Mehta Cast #2 (November 2011):

Prior to Mehta Cast #3 (January 2012):

Prior to Mehta Cast #4 (March 2012):

Prior to Mehta Cast #5 (June 2012):

Prior to Mehta Cast #6 (August 2012):

Prior to Mehta Cast #7 (November 2012): 

Prior to Mehta Cast #8 (January 2013):

Prior to Mehta Cast #9 (March 2013):

Prior to BRACING at 0 degrees!!! (May 22, 2013)

Jackson = 1
Scoliosis = 0

Praise the Lord!


Jorge R. Ruiz said...

Mrs. Heath,

Thank you for your blog. I'm the father of a two year old brave little girl with PIS. Her first cast had to be taken off due to that she was not left with much room for her stomach to expand, going to the bathroom and breathing became a problem after three days. I'd love to get in touch with you, I have so many questions. Thank you for your time god bless.
My personal email is -

Jorge Ruiz

Anonymous said...

Thank you so much for posting your journey. Few weeks back my Pediatrician suggested that my son (13 month) may have Scoliosis. This has devastated me and my wife. So much of thoughts going on in mind. Thank you so so much for posting your journey. Your journey provides me such hope. God bless your family.

JenHeath said...

Dear Anonymous!

I am so glad that your family is finding some solace in my blog and Jackson's story! I just want to throw this out there ... my email address is:

Please feel free to email me anytime with questions and/or concerns. I would more than happy to share our experiences ... as well as help you should you need to make any decisions about treatment. MANY families from across the world have contacted me due to this blog ... so, please know you are WELCOME to do so!

I know you are probably overwhelmed right now ... but please know that I'm here if you need anything. I rather "runneth over" with PIS information ... and have many other contacts I can share if needed. Just let me know!

Best wishes!