by mmcnett | Aug 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Seattle, WA – Our son Jake was about three months old when an X-ray revealed he had a 22-degree curve of his spine. We saw an orthopedist, who ordered an MRI and a CAT scan to be done under anesthesia. All results were negative and we were told to wait and see if the curve would resolve on its own. It didn’t. We went in for a second X-ray when he was nine months old, and his curve had already progressed to 45-degrees. His orthopedist recommended that we put him in a brace that very day and sent us to the orthotist (brace specialist). They measured him right then for the brace, as he screamed and cried. While this was happening, I asked how many infant braces this team had done? The answer was, “once.” That moment changed my life. My instinct told me we were at the wrong place for my son.
My husband and I did some research and found ISOP (the Infantile Scoliosis Outreach Program), and through them, found facilities that practiced the proven, Early Treatment Mehta Casting Method. I called Shriner’s Hospital in Portland, OR the next day and booked our appointment.
I then called Children’s in Seattle and cancelled the brace that was being made for Jake, confident that we had finally found the solution we had been praying for. We are so grateful to ISOP and its Founder, Heather, for all the advice and help throughout this process.
We arrived at Shriner’s in Portland anxious to get the casting underway; he was 14 months old and had just begun to walk. We were treated so wonderfully at Shriner’s and are forever grateful for the opportunity to have the early treatment performed. The nurses and doctor were so amazing and his casting went beautifully.
By the end of the first day he was walking around and by day-two, he was bending over to pick things up – no problem! It was incredible to watch our resilient and brave little boy, as he was learning how to walk and sit up all over again. Jake went from 50 degrees to 15 degrees in his first cast, which was amazing!
During our last visit to Shriner’s in Portland, his doctor called while Jake was under anesthesia to tell us that Jake’s curve was at 0 degrees! We were shocked and pleased as his doctor advised us to have him molded for his temporary, follow-up brace. He has been in a thin fiberglass brace – similar to the look of his casts – for 81/2 weeks now.
Every family with a child suffering progressive infantile scoliosis has its own story and journey to share. Most are not so happy. For the lucky among us, there is ISOP and Dr. Min Mehta; the hope they inspire; and the early intervention that allows our kids to lead happy, healthy active lives.
Sonja and Shane, Seattle, WA
by mmcnett | Jul 26, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts
Maintaining skin integrity while your child is in a cast will keep them comfortable and reduce the risk of skin problems and irritations.
The “Flossing” process is recommended for children in casts as an effective way to slough off dead skin and prevent potential skin issues. The material used to floss is a basic pair of nylons and is recommended for children with no skin issues.
Watch a Video of River’s Mom performing the Flossing Technique
THANK YOU Mommy!
by mmcnett | Jul 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Cole was born at 36 weeks gestation as a healthy and happy 4.5 lb. baby on March 9, 2005. He has a fraternal twin brother named Jack who does not have any signs or symptoms of infantile scoliosis. At around 4 months of age, we noticed that Cole’s chest wall seemed to protrude quite a bit. We didn’t think too much of it, but at his 6 month pediatrition check up we pointed it out to the doctor. She turned him on his stomach, and we then noticed a few small folds on the right side of his back. She immediately referred us to a pediatric orthopedic surgeon who specializes in scoliosis.
We were able to see him at Cole’s 7 month birthday. An x-ray was taken which revealed a 48 degree left thoracic curve with the RVAD estimated around 52 degrees. The next step was the MRI to rule out any congenital issues. Cole was officially diagnosed with idiopathic infantile scoliosis. The orthopedic surgeon said to come back in 3 months to see if it was a progressive curve and that we would most likely be facing years of bracing, surgeries, and eventual spinal fusion. We were devastated.
We were not satisfied with waiting 3 months, and we turned to the internet for more answers and information. We just new there had to be something less invasive than surgeries and wanted to seek help sooner than 3 months.
Within a few days of Cole’s diagnosis we began reading about early treatment and found a contact number for ISOP. A few weeks later, ISOP invited us to the second Early Teatment Trial Project at Shriner’s Children’s Hospital in Erie, Pa. The timing, location, and treatment was amazing. We felt so blessed and jumped on the chance to have a less invasive, simpler, and less time consuming option for Cole and his future.
At the time Cole was the youngest baby to have ever participated in the ETTP with Dr. Mehta. He was 8 months old when his first cast was applied. The results of his treatment are as follows:
November 10, 2005 (1st cast):
-Before cast: 48 degrees
-In Cast: 28 degrees
-RVAD in Cast: 34 degrees
January 19, 2006 (2nd cast):
-In cast: 15 degrees
-RVAD: unknown
March 29, 2006 (3rd cast):
-In Cast: 14 degrees
-RVAD: 28 degrees
May 24, 2006 (4th cast):
-In Cast: 10 degrees
-RVAD: 23 degress
July 11, 2006 (5th Cast):
-Incast: 8 degrees
-RVAD: 9 degrees
Cole is now 17 months old and in his 5th cast. He is walking, climbing, talking, and keeping up with his twin Jack. The casts have not held him back at all. We are told that Cole will have 1-2 more casts, and then the bracing process will begin for 6-12 months. By the time he is 2 1/2, we hope to be done with the majority of his treatment. And the best part is we have avoided surgeries, growing rods, and spinal fusions.
Thanks so much to Dr. Mehta and her dedication to these small children. Thanks to ISOP who has dedicated so much time and effort in educating parents and doctors on the benefits of early treatment for progressive infantile scoliosis, and thanks to Cole’s doctor, at Shriner’s Children’s Hospital, Erie, Pa., for learning about early treatment and helping Cole be a happy, healthy scoliosis free kid.
If you have any questions, please feel free to contact me at: michelle_r_baird@yahoo.com
Sincerely,
Cole, Michelle and Matthew
by mmcnett | Jun 12, 2013 | Infantile Scoliosis, Parent Power NEWS, Testimonials
After torrential rains in Fayetteville, NC, early Saturday morning the clouds parted and the perfect day for a 5K run unfolded. At Honeycutt Park, it was a run Straight to the Finish in support of the work of the Infantile Scoliosis Outreach Program (ISOP), a program of Ability Connection Colorado.
50 runners preregistered online and day-of registration began at 7AM to welcome an additional 7 participants (weather reports may have scared some folks away). All registered runners and 1 Mile walkers received a beautiful green ISOP t-shirt and a sincere thank you from 5K race Founding Mother Rachel Jacobs who was busily preparing the site for the event. Rachel’s young daughter Ella has a spine growing straight thanks to ISOP and Mehta Casting! And this race is her way of giving back to ISOP and Heather Hyatt Montoya for providing life-changing resources for the Jacobs family.
- Diamond Dust played courtesy of the Cape Fear Music Center
There’s nothing like an early morning concert to set the tone for a great race! Diamond Dust, an all-girl, all-teenager band from the Cape Fear Music Center was on hand to entertain the racers as they geared up to run. Playing their version of rock classics from Heart to Joan Jett, it’s safe to say that these ladies earned some new fans and got our athletes pumped up.
At 8:30AM the whistle blew and the runners were off on a beautiful 5K (3.1 mile) course that wound through the beautiful and quiet neighborhoods behind Honeycutt Park. The first runner finished in just 18 minutes and remarked “Wow – what a great course! If you do this again next year, I’ll be here.” With that he handed the ISOP t-shirt to his 7 year old daughter/biggest fan and they headed out to enjoy the rest of their day.
- Oden , the youngest finisher of the 5K is congratulated by Sweet Frogs
All the racers finished in good time and great spirits. Two large Sweet Frogs greeted finishers with water and energy bars to replenish their efforts as well as Sweet Frog coupons.
First-time 5K racer Carmen traveled over an hour to Fayetteville for the race and was beaming as she crossed the finish line. Oden was our youngest racer at 3 months (pictured below celebrating with the Sweet Frogs!) and longtime runner Gregg was our most mature participant at 74 years young.
The proceeds from the Inaugural 5K Race Straight to the Finish will allow ISOP to continue training physicians through hands-on tutorials in Mehta’s Growth Guidance Casting — the only noninvasive cure for progressive infantile scoliosis.
Thank you to The Jacobs Family and darling Ella for your compassion and drive.
by mmcnett | May 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Brooke was born on July 7th, 2001. At 4 months old , intuition told me something was not quite right.
At 6 months old, I noticed that her back was curved slightly. My father and her father both agreed.
I called the pediatrician and was seen the next day. At the appointment, we asked about scoliosis. We were told no, but to ease our minds an x-ray was taken. They called later that day to say that Brooke indeed, had scoliosis. At the time her curve was measured at 27 degrees low thoracic, and 20 lumbar.
We were told then to see a specialist. We did, at our local Children’s Hospital. This hospital insisted on doing more x-rays of their own. These films were unnecessary, and revealed the same measurements as before.
The doc looked at her back, and suggested that we return for a follow up in 5 months. That seemed unreasonable, but at that time I didn’t know too much about scoliosis..
Within a couple months it was obvious to us, that the curves were progressing.
I called to set up an earlier appointment. She was 9 months old, and not able to completely sit up unassisted.
Another doctor in this hospital ruled out congenital abnormalities, after an x-ray was taken of her head and neck area. No structural abnormalities were found.
More x-rays revealed that Brooke’s curve had progressed to 37 degree low thoracic and 30 degree lumbar, in a couple months. At this time they suggested we get a brace. We could get one at the hospital which was 2 hrs away, or we could contact our local orthotist. We chose the latter, which was also a mistake. They insisted on more x-rays.
The 2nd doctor from our local children’s hospital never recommended a follow up appointment to make sure brace was adequate.
She was placed in her first brace close to her first birthday. They were neglectful on directions, care and tightness of this TLSO Brace.
The brace was not adequate, and they felt that it was not holding her. It was taken to numerous places for adjustments, but never fit well. It was worn 23 hrs a day.
This is when my research began. I joined numerous internet support groups, in effort to learn more.
I told Brooke’s Story and was contacted by Heather. We talked about the ineffectiveness of bracing these small infants/children. Heather recommended casting as a way to maintain Brooke’s curve.
We had Brooke in physical therapy at the time because she still could not sit or stand unassisted. I showed our physical therapist’s Brooke’s x-rays, and they suggested we look into a scoliosis clinic in the same hospital The doctor there suggested an x-ray of Brooke in her brace to make sure it was holding her, and it wasn’t.. She was then measured without the brace and this revealed that her true curves were 55 degrees low thoracic, and 45 lumbar.
I knew as a mother that I needed to act fast. I wanted another opinion, so I made yet another appt at another reputable children’s hospital in Pittsburgh, PA. This doc took more x-rays with and without the brace. He felt that I was not putting the brace on tight enough, so he tightened the brace and measured her at 25 degrees. He also stated that he was not impressed with this particular brace. He said that her scoliosis would progress with her growth, and that we should just “wait and see.”
In Jan 2002, we had an appt with the Shriners in PA. They made a new brace for her in 2 weeks. They also predicted cast’s, and a halo in her future before surgery in effort to maintain her curves and prolong surgery for as long as we could.
A follow up appt with the Shriners in Erie PA. was made in a month. The doc thought the brace was effective, and wanted to see Brooke again in 3 months.
Before her next appt., I was contacted again by Heather. She informed me of her recent connection with Dr. Mehta. She sent me the video, “A New Direction.”
Upon watching the video, I knew that I needed to give serial corrective plaster casts some consideration. No one had ever given us any hope before. WAS THIS FOR REAL?
I immediately presented the video to her doctors at the Shriners. Her doctor watched it and called me back. He said that he was fond of Dr. Mehta’s work, and that he was willing to put a plaster cast on Brooke, if that’s what we desired!
Although, at our next appt. her curves were measured 10 degrees lower. We were so happy! We just knew her curves were going to get better at that point. We were given a little hope, and we ran with it. But, in the back of my mind, the video continued to replay.
Meanwhile, Tawney, (Tyler’s Mom) called to inform me of his wonderful progress in his first cast..
I was excited for her, but was also confident that Brooke was getting better, so why torture her during the summer in a cast? Not to mention, she was in aquatic therapy and loving it.. I knew it was benefiting her at the time, and her doctor agreed.
An appt was made in 6 months, but that was not soon enough. The brace wasn’t fitting well, and we needed another approach.. We were seen again in 4 months, and it was decided that the brace was not holding.
I knew then that it was time for a cast. Her doctor agreed, and Brooke’s first plaster cast was applied 2 weeks later, at age 2yrs and 4 months old.
We were admitted to the hospital on November 4, 2003, the night before her first cast was applied. She was measured at a 47 low thoracic, and 43 lumbar. .In the cast, she was measured at 17 degree low thoracic, and 5 degree lumbar.
We went home that evening. We were so exhausted.
Unfortunately, Brooke was reacting to anesthesia, and then developed bronchial asthma. Needless to say, the first 2 weeks were quite difficult.. Although, we knew most of her discomfort was due to the asthma.
Within a couple weeks she had completely adjusted to her new cast.
Our follow up appt. was one month later, and the standing x-ray revealed that she had settled to 25 degrees, in the cast.
We had to schedule an earlier appt, because she had grown so much in a couple months. The cast was sawn off, and her 2nd cast was applied. Her doctor was able to get her down to 12 degrees in this new cast!
She adjusted to this new cast even quicker than the last.
We are now scheduled to go back at the end of March.
I would like to give special thanks to Dr. Min Mehta for dedicating her life’s work to the treatment of our children.
I would like to thank Dr. James Sanders for applying the casts when no one else would.
I would like to thank Heather Hyatt and The Infantile Scoliosis Outreach Program for giving me the educational material I needed to make the best choices for my daughter Brooke.
My daughter’s curve correction would not have been possible without the dedication of these people, and for that I am eternally grateful.
Thank you for reading our story, and feel free to contact me with any questions regarding Brooke’s care.
I’ll keep you all posted.
Sincerely,
Bridgette
by mmcnett | Apr 20, 2013 | Buying Valuable Growth Time, Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Olivia’s Story
After two years of extensive research, I was finally able to locate the only person on the planet willing and able to help my child. Unfortunately, he lives in France. Luckily, I made contact with him before he retired in June 2000. His recommendation was for a procedure considered experimental, and not commonly practiced in the U.S. It consists of halo traction, a specialized, two-piece, adjustable plaster cast with turnbuckles, and Bi-Pap breathing exercises. The combination procedure was performed on October 2, 2000 on 2 ½ year old Olivia & 3 1/2 yr old Breann at the Shriners Hospital in Salt Lake City, Utah.
This traction therapy/experimental procedure took three months. So far, we are extremely happy with the results. Olivia entered the hospital with a 96º thoracic curve. One month later, the curve was at 45º. The goal now is to maintain the curve, she is currently in a plastic brace with neck support. it’s a lot of hardware, but it allows removal once a day for the skin to breathe, and the alternative exercises we’ve chosen to stretch & straighten her spine, i.e. inversion table, hanging rigs, pilates, yoga and more. Details on these and other disciplines will follow, but it’s important to note now that they strengthen muscles that are not used while in a Risser Cast the other 9-11 months of the year. My research indicates Olivia’s curve will revert back to 96º within 1 ½ -3 years if alternative solutions are not found. Bracing without neck support has proven to be of no significant benefit for this type (thoracic) infantile scoliosis and certainly not at Olivia’s age.
Chronological History
Following Olivia’s birth, an intern who examined her heard a clicking in her left hip and asked seven other doctors to examine her. They all concurred there was nothing wrong with her hip and refused my request to give her an x-ray. They stated they don’t expose newborns to unnecessary radiation. Five months later, while giving Olivia a back massage, I noticed that the left side of her back seemed to be a little more muscular than the right. I immediately took her back to the hospital where she was delivered. They intimated that she was lazy and only wanted to use one side of her body, therefore, we should move all activities to the opposite side of the room to make her use those other muscles. This was tried for a few wasted hours. She had always used both sides of her body and I didn’t believe the diagnosis. Instead, I took her to Children’s Hospital in Denver where they took x-rays and immediately diagnosed Infantile Scoliosis. At this time her thoracic curve was measured at 39º.
At my insistence, an x-ray was taken of her hips and it was determined her left hip had been subluxed since birth thus favoring (but still using) the one side. Her hip was reset and she was placed in a spica cast for one month.
This was followed by a hip brace for three months (while the spine continued to curve), but I was told the hip must be aligned first, then the TLSO brace worn in order to attempt correction or at least maintenance of the spine. She was then fit for a TLSO brace that was unsuccessful in maintaining her curve. This meant continued deterioration and ultimate fusion of her spine before her torso would be fully-grown. It meant certain lifelong deformity with severe respiratory problems.
Frustrated with the doctor’s inaction to stop this progressive curvature of the spine, my research on Infantile Scoliosis began. I took Olivia to at least 20 Orthopedic doctors who’s specialty was Scoliosis in our state (Colorado). All of them agreed with the diagnosis and treatment except for one doctor who said that Olivia needed serial corrective plaster casts. She indicated that this treatment probably wouldn’t be available to us in the U.S. because doctors here consider this practice archaic and ineffective.
I began sending Olivia’s x-rays to most major Children’s Hospitals in the U.S.
I then began sending them abroad to France, England, Scotland and Holland. I either received no response from the U.S. doctors or their response was to advise me to keep Olivia in the TLSO brace and “hope for the best.” All the doctors abroad agreed that bracing without neck support has not been shown to be of significant benefit for this type (thoracic) infantile scoliosis, and certainly not for a child Olivia’s age.
I presented this information to all of her Colorado doctors and they insisted that serial corrective plaster casts were ineffective, barbaric and an archaic practice. I then made the decision to raise money to live in France where I knew of a doctor who could help us. I was determined to speak to him personally. Fortunately, I was able to obtain his home address and immediately began sending the x-rays and medical information to him. He called me at home and once again confirmed that Olivia needed serial corrective plaster casts with neck support. Again, her Colorado doctors didn’t agree with this recommendation.
Olivia’s Colorado doctor at this time was planning a trip to France for a spinal convention and was able to confer with this French doctor about the right course of treatment. Upon his return, his mind was changed.
I then re-contacted a doctor at the Shriners Hospital in Salt Lake City with whom I had been corresponding all along. He informed me that this French doctor would be in Salt Lake City in June 2000 before he retired and that he would try to set up an appointment for Olivia. We met him at Shriners where he examined her and conferred with the doctors at Shriners, who agreed to treat her, per his recommendations.
The other recipient of this procedure, also a Coloradoan, 3 1/2 year old Breann, curve has improvement from 69 degrees to 28 degrees.
The above successful results occurred because Dr. Jacques D’Astous was willing and committed to try a therapy not commonly done within the U.S. There ARE alternative solutions besides fusion for this type of scoliosis in the U.S., and he alone was able to provide one. We are eternally grateful and indebted.
October 2003 Update
I am sorry for not having updated this site sooner.
Much has happened since the last update. Like my introduction to orthopaedic spinal surgeon, Dr. Min Mehta.
Through my relationship with the Scoliosis Association in the United Kingdom, ( S.A.U.K.), I was introduced to Dr. Mehta who has successfully treated a large number of infants with progressive infantile scoliosis using serial corrective plaster casts.
Dr. Mehta does NOT “wait and see,” how large the curvature is going to increase before applying a cast, but rather applies the cast immediately after completion of necessary exams to confirm the diagnosis of a progressive scoliosis.
This immediate approach to treatment has resulted in successfully straightening the spines of numerous infants and young children. She has followed the progress of her patients for over 10 years, and has found they continue to remain straight.
I have a video produced by Dr. Mehta, her foundation ARISE, U.K. and the parents of children whos spines have been improved or completely corrected.
If you would like a copy of this tape, please contact me at, heather@abilityconnectioncolorado.org/newsite/infantilescoliosis.com. All proceeds go to ARISE, U.K.
The first Infantile Scoliosis Outreach Program ( ISOP), in America is now officially being developed. “My relationship with Ability Connection Colorado now gives ISOP the opportunity to fundraise. I will keep you aprised of events on a regular basis.”
Thanks for your emotional support in the past, and I look forward to our continued communication through the new list serve, “C.A.S.T.” , (Casts As an Alternative for Scoliosis Treatment), e-mail, and telephone.
Now, for an update on Olivia.
On September 25, 2003 Dr. D’Astous applied her “winter,” cast. She was able to spend the entire summer in a removable brace, which made for a great summer!! She continues aquatic therapy during “cast-off,” time, and exercises everyday.
Her thoracic curve is currently around 67 degrees. A far more livable degree than 96 , which is where the curve was exactly three years ago!!!!!!!
We are all very grateful and happy with her progress, and will continue our research into the future.
Sincerely.
Olivia’s Mom
Olivia’s Update – November, 2006
In an effort to maintain her severe curves, Olivia wore casts and braces until she was eight years old. At that time, her doctors determined casting/bracing would no longer be enough help for her tenacious curves, and recommended a more aggressive care plan. Because her largest curve had returned to 100+ degrees, it was determined that halo traction would, once again, be her best option. Olivia was placed into her second halo on January 15, 2006, and was hospitalized for about two months. Her first halo, in 2000, bought her six years of precious growing time, so we were looking forward to the second episode of non-surgical correction she was likely to achieve with the halo. In further support of the halo traction procedure, we had recently discovered and researched a new surgical procedure for which halo placement was a prerequisite. If Olivia was to qualify for this new procedure, the halo would first have to decrease her curves enough to make the procedure viable.
This new procedure, called the dual-hybrid version of the Vertical Expandable Prosthetic Titanium Rib (VEPTR), had only recently been developed by an orthopaedic surgeon in Salt Lake City, UT. The dual-hybrid VEPTR is a surgical procedure that consists of two rods that are made of titanium, are adjustable, and are placed on the outside of the ribcage. They are attached to a set of top ribs and to the pelvic structure on the iliac crests.
It is intended to be a temporary option, to help Olivia maintain her current degree of 60, until she reaches skeletal maturity. At that time, the devices will be removed prior to her definitive procedure. The hybrid is considered internal splintage, and must be adjusted surgically as the child grows, approximately every six months. We decided to pursue this new option for many reasons. First, it was recommended by our trusted orthopaedic surgeon. Second, the implanted hardware doesn’t touch the spine directly.
Olivia’s initial implantation surgery took about an hour, and recovery took about a month. It was a very difficult process, but the result was worth every minute of pain! Olivia had grown four inches by the time both procedures were completed. We had to go shopping for a whole new wardrobe! In early September 2006, Olivia underwent her first hardware expansion—a minimally invasive procedure from which she recovered quickly.
All in all, we are very pleased with Olivia’s progress. She is living a new life after undergoing these procedures. She attends school full-time, and does everything a typical kid does. She is a really fast runner, and she is in her fourth year of piano lessons. She is in the process of picking out her annual piano recital piece, and will probably choose a song composed by Alicia Keyes (her favorite artist).
Please feel free to e-mail me directly at heather@abilityconnectioncolorado.org/newsite/infantilescoliosis if you have any questions about the halo, the VEPTR hybrid, early treatment, or Olivia’s piano recital!
Sincerely,
Heather
by mmcnett | Mar 6, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Progressive Infantile Scoliosis (PIS),, Testimonials
My daughter, Madison, was diagnosed with infantile scoliosis at the age of 6 months. All of the initial information I received from her treatment team involved countless surgeries and no promise of real correction. Through the ISOP website I was able to connect with other parents who were experiencing the phenomenal success through a series of EDF jackets. After more research and several conversations with Heather Montoya, I opted to seek this same procedure for my baby.
We began our EDF journey at a Shriner’s Hospital. Madison is now completely corrected. She leads a very active lifestyle participating in gymnastics, ballet, and soccer. She has remained corrected; without further treatment since 2005. Without this innovative procedure, the level of deformity she would surely be at, would not allow her this quality of life. I am eternally grateful to ISOP, Heather, Shriner’s, and Dr. Mehta.
Awarding this grant to ISOP will offer countless other children the same opportunity to experience this same success. Heather’s vision and perseverance to educate the globe in this gentle, effective treatment is unsurpassed. There must be a continuation of education, not only in the simplistic diagnostic approach and awareness campaign to pediatricians across the country, and around the globe, but certainly in the process of early treatment.
Jennifer Stewart
by mmcnett | Jan 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Madison was born full term by cesarean section on August 26, 2003. At birth, her pediatrician noticed a click in her left hip. An orthopedist was called in, and she was immediately placed in a Pavlic harness. She wore this removable brace 24/7 for three months. Under no circumstances, we were told, should it be removed. Finally, when she was three months old, I gave Madison her first bath and noticed the hump in her ribs.
I took her back to the same group of orthopedists, who actually specialized in pediatric scoliosis, and was told that there was nothing wrong with her spine. They suggested that the Pavlic harness had caused Madison to use only the muscles on one side of her body, and that she would need a little time to readjust. My husband returned from deployment when Madison was seven months old, and he immediately noticed her rib hump. This is when we concurred that there was definitely something wrong.
We took Madison to the pediatrician who examined her back with a scoliometer and immediately concluded that she did, in fact, have some type of scoliosis. X-rays confirmed our suspicions. This was March 23, 2004, and her COBB and RVAD both measured 30°. He referred us to an orthopedist he knew personally who specialized in infantile scoliosis. This doctor prescribed a TLSO brace, which Madison wore home that day. In the brace her COBB measured 13°. One month later, her out-of-brace x-ray revealed her COBB at 48° and RVAD at 50°. She wore this TLSO brace 23 ½ hours each day; it could be removed only for bathing three times each week.
At this time, the doctor mentioned that he knew of some great work being done for progressive infantile scoliosis at Intermountain Shriners Hospital in Salt Lake City, and this is when my search began. I spent the entire night on the Internet, and that is when I came acrosswww.abilityconnectioncolorado.org/newsite/infantilescoliosis , which has proven to be an invaluable source of information on the early treatment of progressive infantile scoliosis. ISOP gave us the “A New Direction” video, and I was able to discuss this gentle alternative with other parents who were currently experiencing early treatment with their infants/young children. Within a couple of weeks, we decided to pursue this uncommon option for Madison.
While we anxiously awaited her evaluation appointment at Shriners, our pediatrician sent us for what seemed to be 1,000 tests. Madison had an MRI of her spine, a slit test with an ophthalmologist, a renal ultrasound, and a genetic appointment to rule out a connective tissue disorder. The renal ultrasound led to radionuclide VCUG. She was also referred for an echo cardiogram; however she was cast before we could get that appointment.
Madison’s progress was as follows:
26 May, 2004
Before cast application: COBB 52°, RVAD 40°
After cast application: COBB 21°, RVAD 20°
*Rotation was significantly reduced
14 July, 2004
After 2nd cast application, COBB 14°, RVAD 2°
13 September, 2004
Before cast x-ray, COBB 25°, RVAD 6°
After 3rd cast application, COBB 2°, RVAD 6°
At this casting, we noticed that her rotation had increased and a new compensatory curve had developed.
After 4th cast application, COBB 11°
22 Nov, 2004
Before cast application, COBB 17°, with increased rotation
After 5th cast application, COBB 8°, RVAD 1°
9 March, 2005
Before cast application, COBB 16°, RVAD 3°
After 6th cast application, COBB 5°, RVAD 0°
25 May, 2005
Before cast application, COBB 5°, RVAD, 0°
After 7th cast application, COBB 0°, RVAD 0°
(mold for TLSO made while still under anesthesia)
Madison’s final cast was removed on July 27, 2005. Her COBB was 12°.
This x-ray was taken after she had been cast-free for 24 hours. The previous out-of-cast x-rays were taken within 5 minutes of cast removal.
Madison wore the TLSO until January 2006. She began wearing a new brace January 10, 2006. Recent x-rays show her COBB at 4° and RVAD at 0°. We will begin to wean her off the current brace in March 2006, by reducing the time she wears it by two hours each day, each week. Then, she will wear it only while she sleeps for one month. If new x-rays then reveal that Madison is maintaining her correction, the bracing will be discontinued.
Dr. Mehta, Dr. D’Astous, the entire team at Intermountain Shriners, and ISOP will always have a place in our hearts. We can’t thank them enough for their dedication to our children with progressive infantile scoliosis.
If you have any questions, please feel free to contact me at: jenstewart73@yahoo.comn
Sincerely,
Madison & Jennifer
by mmcnett | Jan 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Rylie was born January 29, 2006, full term by cesarean section. She was a healthy 5lb 14oz little girl. Three weeks after Rylie was born my mother brought to my attention that Rylie kept her head tilted to the left. I took her to see the pediatrician who confirmed she had Congenital Torticollis and referred her for physical therapy. At 10 months old the torticollis had resolved, however Rylie still had a very obvious hump on the left side of her back. The physical therapist thought it was a muscle, however I myself had progressive adolescent scoliosis and my gut told me it was not muscle. I scheduled an appointment with a Pediatric Orthopedic doctor at our local children’s hospital. Rylie was 10 months old at the time of her visit. The doctor did x rays with her standing and confirmed that she had Infantile Scoliosis with a left thoracic curve measuring 40 degrees. They recommended we get an MRI to rule out any other anomalies and to confirm it was idiopathic scoliosis. January 2, 2007 Rylie had the MRI which confirmed it indeed was idiopathic scoliosis.
The doctor informed us this was most likely progressive infantile scoliosis due to the degree of curvature and to come back in four months for a follow up. They said at that time we can discuss our options for treatment once they get another set of x-rays. My husband & I were not willing to “wait and see”. That is when I started my search and found ISOP (Infantile Scoliosis Outreach Program). As I read all of the success stories I knew this was exactly what we were looking for, a non-invasive method of treatment.
I immediately joined the C.A.S.T. support group. All members of this group were very helpful as they explained the Early Treatment casting method and the importance of a Mehta trained doctor. We were put in touch with the Shriners hospital in Erie, Pa.
Rylie was evaluated by a surgeon who had been recently trained on the Mehta Method. The surgeon confirmed Rylie was a candidate for the Early Treatment Method and applied her 1st plaster jacket on March 8th 2007. She had an x-ray lying down prior to casting that revealed a 27 degree left thoracic curve with 25 degrees of rotation. In her first cast she had another x-ray showing a 7 degree curve & 7 degrees of rotation.
The rest of the casting went as follows:
2nd Cast May 3, 2007
Out of cast – 20 degree curve / 0 rotation
In cast – 6 degree curve / 0 rotation
3rd Cast July 11, 2007
Out of cast – 17 degree curve / 0 rotation
4th Cast September 6, 2007
Out of cast – 12 degree curve / 0 rotation
My daughters surgeon anticipates this being Rylie’s last cast. We are scheduled to return in November 07. As long as Rylie’s curve has improved to a 10 degree curve, she will be molded for her brace.
We are so pleased with her progress and are forever thankful to the ISOP and the Shriners Hospital Network. They have completely changed our daughters quality of life.
Please don’t hesitate to e-mail me, should you have any questions regarding my daughters progress with this gentle, effective treatment.
Sincerely,
Kelly, Jason & Rylie
by mmcnett | Dec 20, 2012 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Dylan was born in October of 2006. He was born 3 months premature for unknown reasons. I had no complications during the pregnancy, but started dilating and having contractions at 25 weeks. I was put on bed rest for 3 weeks and took terbutaline to try and stop the contractions. At 28 weeks, the labor could no longer be stopped. Fortunately, the doctor had given me corticosteroids a couple days prior to his birth which helped develop his lungs quicker and he had a pretty smooth course through the NICU.
He came home after 43 days in the hospital. We noticed after having him home a few weeks that he held his neck to the right all the time. We mentioned it to the pediatrician and she explained that it was torticollis (a tight neck muscle). She recommended physical therapy. Dylan started seeing a physical therapist in the spring of 2007. She worked on his torticollis as well as helping him to reach milestones, since he had some mildly low muscle tone which was likely due to his premature birth. He also had plagiocephaly (flat spot on one side of his head). It is fairly common in preemies and in children with torticollis.
In May of 2007, he received a STAR band helmet to help mold his head and reduce the flat spot. He wore the helmet for 3 months. In June of 2007, he was just beginning to sit and we noticed that he would slump to the right when he sat. Somehow this came up in discussion when we were seeing his orthotist for the STAR band. The orthotist asked if he could hold him a minute and he felt his spine. He suggested that we get him checked for scoliosis. We asked our physical therapist about this and she felt pretty confident that his spine was straight, but we still followed up with our pediatrician. She also thought his spine seemed straight, but ordered the x-ray as a precaution. Sure enough, the x-ray showed a 16 degree curve.
I immediately started researching infantile scoliosis on the internet and found the Infantile Scoliosis Outreach Program (ISOP). I learned about RVAD (Rib Vertebral Angle Degree) measurement and how it is an indicator for progression and saw the recommendations for getting a MRI done to rule out congenital issues. We were referred to a local orthopedic and he gave us the RVAD measurements and suggested a MRI and an echocardiogram. I also asked about a kidney ultrasound since I had read somewhere that kidney issues could be linked to scoliosis. He thought that was unlikely, but approved it as well. Dylan’s RVAD was only 5 degrees, so he recommended just waiting and watching. This seemed in line with what I had read during my own research, so I felt good about the decision. However, even though all of his tests came back normal, I noticed that the MRI results indicated a 20 degree curve which concerned me since it had only been a couple weeks since the initial x-ray was taken that showed a 16 degree curve.
I called the local orthopedic and he ordered a second x-ray. This x-ray confirmed a 21 degree curve. At that time, the orthopedic recommended a Charleston Bending Brace to be worn at night. I asked the local orthopedic about Early Treatment with casting and he did not recommend it at that time, but I got the impression he had not had a lot of experience with it. I decided to be proactive and schedule an appointment with one of the doctors who believed in Early Treatment with the Mehta style of casting for infantile scoliosis. In the meantime, we went forward with getting the Charleston Bending Brace.
Our first visit with the doctor who had been trained in Dr. Mehta’s method was in October of 2007. Dylan’s x-ray showed a 31 degree curve and while his RVAD was still below 20 degrees, it too had increased. At first, the doctor seemed a bit on the fence on whether to cast him or not, but when I showed him the previous x-rays and how rapidly the curve had progressed, he immediately recommending casting him. Dylan received his first cast the week of Thanksgiving. It took a couple days to adjust to the cast, but soon he was doing all of his normal activities. He continued to receive physical therapy and we went about our lives as usual. He wasn’t able to get in the bathtub or go swimming, but other than that the cast didn’t seem to bother him too much. He was a little delayed in reaching some milestones such as crawling and walking, but is now on target for all of his gross motor milestones.
Every 8-10 weeks we flew up to Chicago for a new cast. Out of the first cast his curve was 21 degrees. Out of the second cast, his curve was 10 degrees. He recently just had his third cast taken off and he is now down to 0 degrees!!!! He is now in a TLSO brace to hold the spine in place. He will wear this brace 20 hours a day for at least the next 6 months. The plan is to follow up with x-rays every 3 months and if he maintains 0 degrees we can take the brace off in 6 months.
by mmcnett | Nov 20, 2012 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Evan was born August 7, 2005, four weeks early, but overall, a wonderfully healthy baby boy. As a mother, I thought that my baby boy was just perfect! I did, however, notice that his ribs did protrude quite a bit on both sides. I attributed this to him being a chunky little boy! A very dear friend of mine discovered at four months old that Evan displayed some characteristics of scoliosis and we referred this concern to his pediatrician.
We made an appointment at Wake Forest University in the pediatric orthopedic department. While waiting for Evan’s appointment, we noticed a progression in his curvature. He slowly began to lean more to his right side in his car seat and swing. Evan was evaluated in November at WFU and was diagnosed with infantile scoliosis. We had SO many questions and felt unsure of the recommendation- to “wait and see” if Evan’ s curvature would progress. As a mother, I didn’t feel comfortable with the options we had been given and began to research.
After reading ISOP’s website, I was determined that Evan needed to have an MRI done to rule out any abnormalities and we had his MRI on 12/31/05. During this time, I noticed that in addition to his body curving to the side, that he had a hard time with turning his head past the midline. We visited a pediatric neurologist and he was diagnosed with torticollis. I was concerned with the difficulty I saw that Evan had moving his head and neck. His pediatrician agreed that he needed physical therapy to help with the torticollis, which resolved around 13 months. After researching and finding the wealth of information that I did on ISOP’s site, I made and appointment at Duke University for a second opinion. It was confirmed in January 06 that Evan indeed had infantile scoliosis, and determined that Evan fell into the progressive type of scoliosis. His MRI showed that his scoliosis was not congenital and that there were no structural abnormalities. At the time, Evans curvature(s) measured at 32 degrees and his RVAD mid 40’s. We shared the DVD that I received from ISOP on the effectiveness of early treatment for progressive infantile scoliosis, and were amazed that all the doctors my son had seen, were recommending bracing or surgery.
We decided to take Evan to Shriner’s in Erie, PA. and he was evaluated in early February. The doctors there agreed that Evan was a candidate for Early Treatment, and on March 14th, Evan was in his first POP (Plaster of Paris) cast. His curvature started out at 46 degrees and his rotation of his ribs was at 64 degrees. Out of his first cast he was 28 degrees with a RVAD of 38. His second cast was applied and he was at 19 degrees in this one! Evans 3rd in-cast measurement was 21 degrees, 4th cast -16 degrees, 5th cast-13 degrees, 6th cast- 11 degrees! What a blessing! Evans doctors say that as long as his curvature(s) dont progress any, after his seventh cast he will be ready for a brace that will be worn 23 hours per day. He is currently in his seventh cast and will be fitted for a brace in March 2007!
Brandon and I are so thankful for these wonderful organizations that have given so much, to my son and my family. They have given us hope, where there was little. The numbers speak for themselves-correction is being achieved for Evan and for many other children across the USA, and abroad. ISOP has given my family and many other families a wealth of information and resources that are invaluable and Shriner’s in Erie, has been a wonderful place to receive Evan’s care. I am in the process of organizing a fundraiser for ISOP and Shriner’s in Spring 07. I want to give back just a part of what was given to us: HOPE.
If your daughter, son, granddaughter, grandson, nephew or niece has a non-resolving case of progressive infantile scoliosis, you have every right to demand the right treatment. Follow the guidelines on ISOP’s website, have all tests done to rule out any abnormalities such as an MRI, order “A New Direction” DVD and arm yourself with all of the knowledge you can. We initially had no hope or anywhere to turn to help our little boy, but thanks to Early Treatment, we had promising options. We had the opportunity to meet Dr. Mehta at the ETTP in Philadelphia, PA in the fall 06, and I felt so very encouraged after her examination of Evan. Thanks to Dr. Mehta’s hard work and dedication, our children are receiving the Early Treatment they need without the need for invasive surgery with such a gentle correction. Evan’s spine has gently been trained to grow straight through the series of 7 casts that he’s had applied. We look forward to the brace in March and time that Evan can enjoy in the bath and pool, but are thankful for the awesome correction we’ve received with the Early Treatment casting process.
Blessings,
Brandon and Jenny
Related Story: Read more about Evan and the bluegrass benefit called HopeFest that was held in April, 2007 and organized by Brandon and Jenny. Click here to read the article.
