by mmcnett | Jul 15, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Physicians Advisory Board
Clinical Training for Mehta’s Growth Guidance Casting (MGGC)
For medical professionals, ISOP facilitates hands-on MGGC clinical trainings several times a year in the U.S.and around the world.
Actual case studies provide experience in the Early Treatment protocol and the precise methodologies for cast application. Training occurs in the OR of host hospitals and involves use of a specialized EDF cast frame.
Pediatric orthopedic surgeons, pediatricians, cast technicians and post op recovery staff typically attend.
Please email heather@abilityconnectioncolorado.org/newsite/infantilescoliosis to request your invitation to attend the next event.
Dr. Mehta’s Findings (The Journal of Bone & Joint Surgery, 2005)
by mmcnett | Jul 15, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, ISOP Resources, Physicians Advisory Board
Get the STRAIGHT facts for Kids
Simple Screening Methods
Early Detection
Non-Invasive Intervention
Life-saving Treatment
PDF Document download: ISOP_screening_guide
by mmcnett | Jul 15, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts
La pequeña Sofía Egües de 3 años sufre de escoliosis infantil progresiva. 
En noviembre del 2012, a pesar de haber recibido tratamiento con un corsé durante sus primeros años de vida, la curvatura de su columna había alcanzado ya los 60 grados.
Los especialistas en su ciudad natal en Lima, Perú, afirmaron que Sofía necesitaba una cirugía correctiva para implantarle unas barras de titanio a lo largo de su columna, junto a otras cirugías de mantenimiento cada 6 meses, y finalmente una fusión temprana de columna a los 8 o 10 años de edad.
“Estaba totalmente seguro que todo esto iba a destruir el futuro, el cuerpo y probablemente el espíritu de mi hija, así que de inmediato mi familia y yo iniciamos la búsqueda de otra alternativa para evitar esta cirugía y corregir la curvatura de su columna”, nos comenta su padre Ismael Egües.
La búsqueda de nuevas soluciones para la pequeña Sofía parecía imposible. Un método llamado “Mehta casting”, un tratamiento absolutamente no invasivo, sin cirugía y delicado para el cuerpo de un niño pequeño, fue su solución. “Enviamos correos a doctores literalmente de todo el mundo”, nos comenta su padre. Médicos en Perú y Sudamérica no conocían este método, y las esperanzas de la pequeña Sofía y su familia poco a poco se agotaban.
La Dra. Noelle Larson de Mayo Clinic, uno de los varios médicos que recibió el correo de la familia Egües, revisó el caso de Sofía, y al poco tiempo les confirmó la viabilidad del tratamiento con Mehta casting en Mayo Clinic en Rochester, Minnesota, seguido por aplicaciones cada 2 o 3 meses por un periodo de un año.
El Mehta casting es un tratamiento en el cual se coloca un yeso alrededor de la columna y cuerpo del niño, sosteniendo la columna erguida mientras el niño crece sanamente. “Viajar cada 2 o 3 meses a los Estados Unidos para el tratamiento estaba fuera de nuestras posibilidades económicas”, nos comenta su padre.
Ismael Egües y su familia solicitaron ayuda a Heather Hyatt-Montoya, fundadora de la organización ISOP “Infantil Scoliosis Outreach Program” de Estados Unidos. Debido a que no existía ningún médico o institución certificada en esta técnica en Sudamérica, la organización ISOP ofreció un entrenamiento gratuito en el Cincinnati Children’s Hospital para el médico de Sofía, el Dr. Raúl Macchiavello — Jefe de la Unidad de Columna en la Clínica Hogar San Juan de Dios.
Un concierto benéfico para recaudar fondos y la gran ayuda de American Airlines, con la donación de los pasajes necesarios para el viaje de Sofía y sus padres a Mayo Clinic, hicieron posible su tratamiento. De igual manera, gracias al increíble trabajo en equipo de muchas personas, se costearon todos los gastos de viaje, estadía y traductores para que el Dr. Macchiavello recibiera su entrenamiento en el Cincinnati Children’s Hospital, experiencia que repentinamente se volvió más enriquecedora ya que el entrenamiento favorecerá no sólo al médico y a la pequeña Sofía, sino a los muchos casos que vendrán en el futuro.
La Dra. Noelle Larson, de Mayo Clinic, estuvo a cargo de facilitar el proceso para que Sofía recibiera la primera aplicación de Mehta casting en Mayo Clinic en Rochester, Minnesota. En menos de un mes, la curvatura de Sofía se había reducido 10 grados con el uso de un corsé rígido, de manera que, luego del procedimiento de Mehta casting en Mayo Clinic, la curvatura de Sofía se redujo de 50 grados a 35 grados. El cambio en las radiografías era impresionante, y los cambios en la vida de Sofía fueron también inmediatos. Sofía tenía una cojera producida por la desviación de la cadera, producto de la escoliosis, pero, tan solo luego de unas horas del procedimiento, Sofía había perdido el 70% de ésta.
Ahora tiene un mayor balance en su cuerpo, y se nota al caminar y al jugar. Conforme pasaron los días, el progreso era evidente. Sofía caminaba con mayor velocidad que antes, y en sus sesiones de terapia física los logros eran indiscutibles. Tan solo un par de días después de su retorno a casa, Sofía se paraba en puntas de pies —algo que nunca había logrado—, y un par de semanas después había bajado por primera vez en su vida una escalera completa.
El Dr. Macchiavello tiene ya su cama especial EDF Casting Frame, requerida para la aplicación del tratamiento temprano con Mehta Casting. DHL Global Forwarding Perú, American Airlines y HP hicieron posible que el equipo esté listo para continuar el tratamiento de Sofía, y se asegurará que muchos niños recibirán el tratamiento temprano con Mehta casting para la escoliosis infantil progresiva.
“Desde entonces, muchos niños de nuestro país tendrán la esperanza de crecer, desarrollarse y ser felices como todos los niños en el mundo”, nos dice su padre.
“Todo esto ha sido posible gracias al gran corazón de muchísimas personas en Perú y alrededor del mundo que se unieron a nosotros en el camino, y especialmente a Dios que así lo quiso. Pero debemos mencionar especialmente a tres personas, la Dra. Min H. Mehta por desarrollar esta técnica, a la Dra. A. Noelle Larson de Mayo Clinic, que sin su ayuda esto no se hubiera iniciado, y a Heather Hyatt-Montoya de ISOP por su gran corazón”, nos dice Ismael Egües.
by mmcnett | Jul 15, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts
Por favor lea aquí para obtener información que puede salvar la vida de su niño. (Please read here to get info that could save your child’s life)
Little Sofia takes big steps with the help of Mehta castin
La pequeña Sofía Egües de 3 años sufre de escoliosis infantil progresiva. En noviembre del 2012, a pesar de haber recibido tratamiento con un corsé durante sus primeros años de vida, la curvatura de su columna había alcanzado ya los 60 grados.
Los especialistas en su ciudad natal en Lima, Perú, afirmaron que Sofía necesitaba una cirugía correctiva para implantarle unas barras de titanio a lo largo de su columna, junto a otras cirugías de mantenimiento cada 6 meses, y finalmente una fusión temprana de columna a los 8 o 10 años de edad.
——————————-
Little Sofia takes big steps with the help of Mehta casting
After Mehta casting at Mayo Clinic, 3-year-old Sofía Egües saw the curvature of her spine reduced from 60 to 35 degrees and has taken steps she was previously unable to.
Three-year-old Sofía Egües has progressive infantile scoliosis. In November 2012, despite having received treatment with a brace during her first years of life, Sofía had a spine curvature that had already reached 60 degrees.
The specialists in her hometown of Lima, Peru, said Sofía required corrective surgery, which involved implanting titanium rods along her spine, as well as maintenance surgeries every six months. Ultimately, they said, an early fusion of the spine could be performed at age 8 or 10.
“I was absolutely certain that this would destroy the future, the body and possibly the spirit of my daughter,” says Ismael Egües, Sofía’s father. “We immediately looked for another alternative to avoid the surgery to correct Sofía’s spine curvature.”
The search for alternative solutions for little Sofía at first seemed an impossible task.
A method known as “Mehta casting” — a noninvasive treatment that doesn’t require performing surgery on a delicate child’s body — was identified as the best solution. Mehta casting is a treatment whereby a cast is placed around the spine and body of the child to hold the spine straight while the child grows. But physicians in Peru and the rest of South America were unfamiliar with the procedure, and the hope of little Sofía and her family began to dim.
Not ready to give up hope, then family “sent emails to physicians all over the world,” says Ismael.
Noelle Larson, M.D., of Mayo Clinic’s Department of Orthopedics in Rochester was one of the many physicians who received the Egües family email, and she reviewed Sofía’s case. Shortly afterward, she confirmed the viability of the Mehta casting procedure, which could be done at Mayo Clinic in Rochester, Minn., with follow-ups every two or three months for one year.
Traveling to the U.S. every two or three months to receive treatment, however, was not within the family’s financial capability, Sofía’s father noted.
elp from Heather Hyatt-Montoya, founder of the Infantile Scoliosis Outreach Program, which connects families of children with scoliosis with resources and information to help them make the best choices possible in the care of their child. The lack of physicians or institutions certified to perform the procedure in South America prompted the organization to offer free training, at Cincinnati Children’s Hospital, to Dr. Raúl Macchiavello, chief of the Spine Unit at the Clínica Hogar San Juan de Dios and Sofía’s personal physician in Peru. The training would not only benefit the physician and little Sofía, but also many future patients.
Funds raised through a charity concert, along with support provided by American Airlines with the donation of two tickets for Sofía and her parents to travel to Mayo Clinic, made the treatment possible. The amazing teamwork of several people covered the cost of all travel expenses, lodging and translators to enable Dr. Macchiavello to receive training.
Dr. Larson was in charge of facilitating Sofía’s first treatment of Mehta casting at Mayo Clinic in Rochester. The use of a brace decreased Sofía’s curvature 10 degrees. After the Mehta casting procedure at Mayo, Sofía’s curvature decreased from 50 degrees to 35 degrees. The change on the X-rays was impressive, as were the changes in Sofía’s life. Sofía used to limp due to the trunk shift caused by the scoliosis, but a few hours after the procedure, the limp improved by 70 percent.
Sofía now has more balance in her body, which is evident when she walks or plays. As the days went by, her progress was clear. Sofía was walking faster than before, and her achievements during the physical therapy sessions were indisputable. After she returned home, Sofía was able to stand on the tips of her toes, which she had never been able to do. Just a couple of weeks later, she descended a set of steps by herself for the first time.
Dr. Macchiavello now has an EDF Casting Frame, a special operating room table required for the early Mehta casting treatment. DHL Global Forwarding in Perú, American Airlines and HP worked together to have the equipment ready to provide continuity to Sofía’s treatment. This also will allow more children in Peru to receive early Mehta casting treatment for progressive infantile scoliosis.
“Many children in our country can now hope to grow, develop and be as happy as any other child in the world”, says Ismael Egües.
“All this was possible thanks to the generosity of many people in Peru and other parts of the world who joined us in our journey, and especially because God wanted it to happen. There are three people that deserve to be individually mentioned, Dr. Min H. Mehta for developing the technique, Dr. A. Noelle Larson from Mayo Clinic for her pivotal help in initiating the process, and Heather Hyatt-Montoya from ISOP for her big heart,” Ismael Egües says.
by mmcnett | Jun 20, 2014 | Congenital Scoliosis, Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories
My story is about two of the sweetest little boys you’ll ever meet. Cameron (8yrs.) and Dylan (5yrs.) The two brothers have many things in common, such as huge smiles that light up their whole face, an infectious laugh, and scoliosis. Although they were both casted in plaster in Dec. 04, their journeys to that point and after are quite different. I’ll begin with Cameron.
Cameron was born on Aug. 28, 1999. Although he was born at 38 weeks, I started going into labor at 34 weeks. With medication and bed rest we held off for four more weeks. As all parents do, we thought our baby was perfect (and still do!) which is probably why it took so long for us to realize that something was wrong. While visiting Grandparents in Colorado when Cameron was 21 months old, his Grandmother noticed he seemed to lean to one side while sitting in the bath tub. We flew home to Portland Oregon the next day and made an appointment with our pediatrician. One x-ray later and our whole universe seemed to close in around us. When I first saw the x-ray, I had to ask “is that his spine?!” It was literally shaped like the letter “C”. The radiologist said he was surprised that Cameron was able to walk in. I was then given the x-ray to take with me to a Pediatric Neuro-surgeon. When I got home, I took it out, called my husband and tried to describe what I was seeing. It was then that I noticed the small marks and numbers drawn in pencil on the x-ray. It said 86 degrees!!! Up until that point, I didn’t realize that spines could actually bend to that degree…
The Neuro Surgeon wanted to rule out any neurological issues, and checked for a tethered cord. After MRI’s, Cat scans, and more x-rays it was determined that neurologically he was fine, but a tethered cord could not be ruled out. She said that it was in a gray area. We had a choice to make….. Our doctor said in her opinion the best option would be to do the exploratory surgery to find out. If there was no tethered cord, well, at least we would know. If we took a chance and didn’t do it and it was tethered, my son’s spine would continue to get worse. We scheduled a surgery date. On July 13th 2001, we found out that Cameron did indeed have an extremely tight tethered cord. Our doctor said it was like taking a rubber band and pulling it as tight as you can. Normally, they’re like a relaxed rubber band.
By the very next morning (post tether release surgery) his back looked better. An x-ray revealed a 67 degree curve!! Three months later at an appointment with an orthopedic surgeon, we found out his back had settled at 53 degrees!!! We were so excited, until the doctor started talking….. He said he’d never seen that much correction with a tethered cord release, before. Davie and I told him we believed it was because of all the prayers being sent Cameron’s way. The doctor then wanted to do surgery, either growth rods or a fusion. That was it….We were offered no non surgical options for my 2 yr. old. It just didn’t feel right. Something inside me said, “No surgery!”. Luckily my husband and mother felt the same way. I told the doctor thank you, but I would rely on prayer and faith to guide me and I just knew Cameron would be ok without surgery. Then, as always, life went on.
On April 17, 2003, Dylan was born six weeks early. After a short stay in NICU he went home. While I was pregnant with Dylan I was told by Cameron’s doctors that there was only about a 1 percent chance he would get infantile scoliosis. We even had an x-ray done before he left the hospital and it showed no scoliosis. And once again life went on, until he was about nine months old and we started to notice the dreaded curve. We were now living in Castle Rock, Colorado and were referred to a well known and respected Pediatric Orthopedic Surgeon. In January, we discovered Dylan had a 24 degree curve. So much for the 1 %. We also had and x-ray done on Cameron, and his curve was progressing. It was now back up to 69 degrees. We also found out that both boys had almost identical curves. Both going to the left, which is unusual in itself, and only one vertebrae apart. I’m told it’s extremely rare for two brothers with no family history of scoliosis to have it, let alone for it to be almost identical. Not that this fact made us feel any better.
After many sleepless nights, I was resigned to the fact that there had to be something new developed in the last three years. There wasn’t. I couldn’t believe I was given the same grim options. The next few months, I can honestly say, were the darkest of my life. My days were filled with guilt (did I do something to cause this?) dread, and self pity (why MY boys?). Then something changed. I had that same feeling I had three years ago in Portland. I knew there was something else out there. I became obsessed with the internet until one day I came across an organization dedicated to infants and children with scoliosis. ISOP (Infantile Scoliosis Outreach Program) was developed by a mother who also has a child with severe scoliosis. It is there that I learned about Dr. Mehta and her corrective, Early Treatment Method that did not involve surgery. After numerous hours “talking” with other parents online, Davie and I decided it was worth a shot. Cameron’s doctor wasn’t so sure, but he did however; agree to try casting the boys. We set a date and waited. As the date got closer I found out he wasn’t going to follow the Mehta Method that we had learned about and wanted. First, the doctor didn’t plan on using an anesthetic. Second, he didn’t plan on applying the jackets himself, his orthotist would. The thought of my boys being hooked up to their medieval looking machine (his words) and pulled and stretched while awake, bothered me. How could they get a good correction if my boys were tense and fighting them? Needless to say, we canceled and the plans to go to a properly trained center were in place. A date for Dec. 13th 2004 in SLC was set. By this time Dylan’s spine was at 39 degrees.
The first week they were casted was the hardest. Initially, the boys hated them. Davie and I cried with them while wondering if we had made a huge mistake, (more guilt) but as the day went on they slowly started to adjust. The next day they were up and playing. And since then, there is nothing they can’t do. Cameron snow boards and plays soccer; he can also do a summersault in a cast!! And Dylan is right behind him. I would like to point out an unexpected benefit of the cast that we noticed right away. Cameron had been suffering for the last year from severe constipation. He was even hospitalized for it. He was in constant pain and nothing seemed to help, not diet changes or even medications. Within a few days of receiving a proper plaster cast, he was regular! And has been ever since. His doctors think his scoliosis was some how causing the constipation issues and I believe it!
With every cast they both showed improvement, sometimes in degrees, sometimes in rotation or just in the way they looked. In May of 2005 they were cast by Miss Mehta herself. It was with her cast that they showed the most improvement. After looking at Dylan’s x-rays, Miss Mehta predicted that Dylan would experience complete curve resolution. And she was right! After examining him again in the fall of 06, she said he was done. And to this day he is still holding at 8 degrees! Cameron is also doing well; he’s at 34-38 out of cast. He has gone so much farther then anyone imagined. Without growth spurts on his side, though, there is only so much correction that can be expected. I would like to give everyone the exact amount of improvement from each cast; unfortunately we lost all our records in a house fire last summer.
I would like to point out now, how different their outcomes are. It’s like looking at a “what if” picture. Since their curves are so similar you can see how critical early intervention is! If Cameron had been treated early with casting when it was first noticed that he had progressive infantile scoliosis, I believe his results would’ve been like Dylan’s. Also, if we would have done the “wait and see” with Dylan, he would not be straight now.
From experience I can tell you how much easier it is to cast a younger child, not only because you have growth on your side, but little kids tend not to be as self conscious. As Cameron gets older, the harder it gets for him. Other kids opinions matter more and kids can be cruel when someone is “different”. Dylan never realized he was considered different. It never fazed him.
Although it is too late for me to change Cameron’s past or outcome, I hope his story helps convince others of the importance of early intervention. Dylan’s situation could have been similar to Cameron’s without early treatment. Just as Cameron’s spine could have grown straight gently & permanently with Early Treatment, just like his little brother Dylan’s. I hope by telling this story we can have more “Dylans”.
At this point we are considering options for Cameron. Our goal is to keep him under 40 degrees and get as much correction as possible. I’ll post any updates as they happen. Please feel free to email me with any questions.
by mmcnett | Jun 20, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Cole was born on January 3rd, 2008, 1 hour before his due date, after an uncomplicated pregnancy and delivery. He received 10’s on his APGAR. The only funny thing about him was that his foot was bent up so his toes touched his calf. They reassured us that it was just because I was very tiny throughout my pregnancy and he must have been cramped. Otherwise there didn’t appear to be any problems.
Within a couple days of being home I noticed that his head was slightly misshapen and that he didn’t like to nurse on one side. His doctor reassured us that it was fine. We should keep trying to get him to nurse on the side he didn’t like. By 6 months he still did not like to turn his head to that side and the doctor kept telling me to keep trying to encourage him, and that because he could do it there was no reason to worry. Both the head shape and turning we later found out were related to his progressive infantile scoliosis.
At about 10 months, while bathing Cole, we noticed that he was developing a rib hump on the left size of his back. I brought it up to the doctor at a his 12 month check up and he didn’t think much of it. We started to notice a slight curve
in his spine, but only when he sat in certain positions. I brought it up again acouple months later at a sick visit, and mentioned that I thought it might be scoliosis, because it runs in my family. The doctor said it was too hard to check at this age, and that they wouldn’t treat him until 2 even if that is what it was. Finally by about 15 months Cole started to stumble when he walked, despite having been walking by 10 months, and started needing to hold his arm out at an odd angle to balance himself. At this point we became increasingly concerned and started to do some research. My husband found ISOP and knew immediately that Cole must have Progressive Infantile Scoliosis (PIS) after seeing the pictures of some of the other kids’ backs. We scheduled another doctor appointment immediately and went in armed with Dr. Mehta’s Growth as a Corrective Force article. Our doctor reluctantly sent us for x-rays reassuring us that as long as Cole was in a brace by his teens, we would be fine.
We got his x-rays and they came back at 45 degrees standing. We got a referral to a local orthopedic for the next week and immediately scheduled an appointment at the Golisano Children’s Hospital at Strong Memorial in Rochester to have him seen. The appointment with the local specialist didn’t go well. They wanted us to hold him in a Risser cast as long as possible then move on to growth rods until they could fuse his spine. 2 months later, when Cole was 17 months, we were seen in Rochester for Cole’s 1st cast. His curve had progressed from 45 degrees standing to 47 degrees laying down with an RVAD measured at 25. The casting went well and they got him down to 23 degrees in cast.
After his casting Cole got his MRI which revealed a small Chiari I malformation in his brain. At this point it is very small and only needs to be monitored. Otherwise, Cole is a healthy, happy and very active 2 year old, who has adapted to his cast very well. He is still the fastest and most active amongst his peers. He loves to show his cast off to everyone and makes sure to tell them how much he loves it. When he gets a cast break, he asks for it back on.
After 1 year and 5 casts Cole is now able to move into a brace. He surprised us all, when he jumped from 13 degrees down to 2 within a single cast. We now get to take him home in his new rainbow brace for a calm 6 months, of summer fun, and no doctors appointments! We couldn’t be happier with Cole’s progress and are so grateful to Dr. Mehta for her incredible work, Heather and ISOP for connecting us to this treatment which has cured our baby and to our fantastic orthopedic surgeon at Strong for getting us to where we are today! We can’t even imagine where our life would be today without the combined help of these 3 different people.
Cole’s Numbers:
- Pre-Casting: 47 degrees laying down
- 1st Cast: 23 degrees laying down, 50 degrees standing
- 2nd Cast: 18 degrees laying down, 30 degrees standing
- 3rd Cast: No x-rays taken
- 4th Cast: 13 degrees laying down, 15 degrees standing
- 5th Cast: 2 degrees laying down, 10 degrees standing
Sincerely,
Cole’s Family
by mmcnett | Jun 19, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Alexandra (Aly) was born in May 2010 by c-section after a normal pregnancy. She was big, healthy and beautiful!
Around 10 months old, while bathing her, her dad and I noticed that she sat a bit crooked. We brought it up to her pediatrician, but he told us not to panic. Because she was such a big, chubby girl, he believed that she was just learning to hold herself up.
At one year, it hadn’t changed, she was now walking, and we noticed a curve of her ribs on one side while bathing her. At her 12m check up, the pediatrician looked a little deeper, and set us for a spinal x-ray. He got back to us within 24 hours and said that the local orthopedic surgeon had set us up an appointment at Shriner’s in Philadelphia. The thoracic region of her spine measured an approximately 60 degree curve.
When meeting with the doctor at Shriner’s, it was decided that Aly would undergo a series of casts to gently correct her spinal curve.
The first cast was the hardest, for sure! New territory for parents, and baby. Aly had just recently learned to walk- and now having the cast down around her hips, it had to be relearned. Adjustments were made for maximum comfort at all times. Bathing and diapering presented challenges, but we had wonderful support from other ISOP parents who had great tips!
Two and a half years, several casts, and 3 custom braces later, Aly’s curve seems to be holding at 17 degrees (thoracic) and 14 degrees (lower). What used to be day to day challenges with bathing and motor skills are now every day parts of life! We are so grateful to her doctors, nurses, and our ISOP “family”.
by mmcnett | May 20, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, News, News, Physicians Advisory Board
At the May meeting of ISOP’s Physician Advisory Board, the Board resolved several key elements to successful Mehta Growth Guidance Casting:
Agreed: Underarm Casts are only effective for curves T8 and lower. Overarm Casts address all curve types.
Agreed: Modifications and/or decorations to casts, as well as cast removal at home should all be discussed with the treating physician prior to any changes being made.
The topic of cast decoration recently surfaced on the Early Onset Scoliosis & Mehta Casting facebook page:
by mmcnett | May 19, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Avery was born on October 8th 2009, weighing 3lbs 2oz. She and her twin sister Addison were 10 weeks early. Avery was my eager one and is the one that decided to come early. They had to force Addison to come out.
Avery would spend 7 weeks in the NICU 60 minutes away from home. The hospital where I delivered did not have a level 3 NICU. At her lowest, Avery was down to 2lbs 15oz. She came home at 5lbs 6oz.
From the beginning Avery has been the one that has always kept us on our toes. She had reflux from the beginning and was on Pepcid. I got used to being puked on from the beginning and boy was it bad. In order to keep her food down and keep her comfortable, she slept in a cradle swing or a vibrating seat. I know now that this could cause issues, but it didn’t in my other daughter, so it wasn’t the root cause of our issues. By 5 months Avery was upgraded to a stronger antacid for her tummy and was doing better.
Due to them being preemies, the hospital suggested a “First Steps Evaluation” at 3 months old (2 weeks old at adjusted age). At the evaluation, she was right on track and they didn’t suspect anything, but wanted to do a follow up 6 weeks later.
That is when it started. At her next evaluation, they noticed that she kept her head titled to one side. She was diagnosed with torticollis. I was given orders for physical therapy as well as home exercises for her neck. I kept noticing that her back was crooked, but everyone assumed this was her adjusting due to her torticollis. Her head became slightly misshapen and we had to see a craniofacial specialist, to look at the possibility of a helmet. This was due to her scoliosis.
She never crawled. But she would do her army crawl and when she would play, she would do what looked like an adorable pose on her side. It was her way of adjusting to her neck and back. We had even started putting a book under her left butt cheek to make her sit up straight in her highchair. That didn’t last long.
We went through 8 months of physical therapy and exercises, but her neck wasn’t getting better and she wasn’t crawling. We were now doing 1 day of physical therapy at our house and then traveling to a therapist 1 day a week. I even had someone suggest cutting the muscles in her neck. We finally had a different physical therapist that suggested we see a specialist for her back.
Avery was 12 months old when our pediatrician referred us to Riley’s hospital in Indianapolis. We had to wait 3 months to get in to see the specialist. This turned out to be the best thing that ever happened to us. We were one of the first patients to see the new specialist. He had just moved here from California and worked with Mehta casting there. The previous specialist did not do casting and we probably would have been given the “wait and see” path.
The first thing he did was shake his head at the idea of cutting her neck muscles and said we were doing everything right with her neck. He then ordered x-rays of her back. She came back with 39 degree curve and 20 degree rotation. Our Dr. made no promises to us, but recommended Mehta casting. He said we were a moderate case and that it should work, but no promises. He also gave us a support website that could offer more explanation and support on casting and that is how I found Heather and ISOP.
We left the hospital with orders for an MRI and a casting date for 2 weeks later.
My Uncle and Aunt went with me and Avery for her MRI. She was 16 months old at this time (13 months adjusted) and weighed 20lbs. She was sedated for the MRI and I was very nervous. I am a pretty strong person and kept it together, but I will never forget the feeling of seeing them take her back.
The MRI came back without any abnormalities, so we were diagnosed with “Idiopathic progressive infantile scoliosis”
The next 2 weeks went by very quickly. January 2011 is when we had our first cast applied. I had not had time to check out the website that was given to me, so I didn’t really know what to expect. Seeing my little sweetheart barely walking (she had just started at 15 months) in a tiny hospital gown, about did me in. She was so brave and didn’t even cry when they took her back.
I went to the waiting area in tears, but walked by a few other mothers sobbing and felt blessed. They had larger groups with them and had their children there for more serious surgeries. One woman my age was even laying on the floor with her head in her mother’s lap, just sobbing. Every time I walk into a children’s hospital, I am reminded of how bad it could be. I know now that scoliosis is nothing to laugh at, but we were in God’s hands and I just knew we were going to be okay.
That wasn’t how I felt when we got home that evening….. Avery came out of surgery fine and she was down to 20 degree curve in cast and 0 rotation. She would wear this cast for 12 weeks. However; she couldn’t sit up, couldn’t walk and couldn’t roll over. My husband and mother-in-law were at the house and they were in tears. Avery just sobbed, because she had lost her independence. My husband ordered me to take her back and have it removed. I stayed strong and found some pictures of scoliosis surgery incisions to show him that we made the right decision. I also logged on to this support website for the first time. Boy did I need reassurance. That was the worst night we have ever experienced.
Avery slept between my husband and I on a pillow for 2 weeks, until she was able to roll over on her own again. It took just about 2 weeks for her to re-learn everything and then watch out J. She is still my little trooper. I grew to be amazed at how strong she became physically and mentally. She has some of the strongest legs I have ever seen. She could go from sitting to standing without holding on to anything or touching the floor with her hands.
Within 3 months of being in cast, her torticollis had resolved itself. Simply amazing!
Casting also gave us other trials. No baths in the bath tub. Very hard to explain when her twin sister was in the bath tub. No swimming. Avery didn’t swim until she was 3 years old, but neither did her sister. We had a few ignorant people to deal with, but for the most part a lot of understanding. She once wasn’t allowed on a carnival ride, even though I explained what her cast was. So, I simply put her shirt back on and got her on the ride. No playing outside on hot days.
All of these sacrifices were totally worth it. They can enjoy these things when they are a little older, but we only have a small window to cure their scoliosis.
Avery also gained 2 inches in height in cast. The cast weighed approximately 3lbs. She is still 2-3 inches taller than her twin sister.
Avery would go through a total of 5 casts. We got down to 10 degrees in the last 2 casts, this was without the cast on, so the Dr. decided to brace.
Avery’s brace was molded from her last cast and she wore this for 3 months, 23 hours a day. At her 3 month check up, she was still holding in her brace, so we were told to come back in 6 months. We actually gained correction in that 6 months, 9 degree curve and 0 rotation, so we have now been brace free and cast free for 6 months. We go back on June 2014 for our next check up.
Avery is a super sweet and smart little girl. She is so strong and faces everyone with courage. She is my talker and confident one. She is also pretty comfortable around strangers, since she has been around so many. She takes things very personal and is a perfectionist, even at age 4. She is hard on herself and cannot stand to be wrong, or to do wrong.
What I have learned through this whole process is to trust your instincts as a parent. There are many people that I have met that have made comments such as “my daughter has scoliosis that they caught in gym and she is fine” Or, “I hate that she has to wear that cast, isn’t there anything else that you can do?”. I had a lot of support and also a lot of people that I felt did not understand my decisions.
The casing process is so new that people want to assume that you aren’t doing what is best.
I can speak from experience that casting works. I am so very lucky that Avery was under the age of 2 when we finally met with our specialist. Her adjusted age made it even better since she was really only 13 months at the time of casting.
by mmcnett | Apr 29, 2014 | Infantile Scoliosis, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
When we walk by a stranger in the grocery store or in public, Camden will be the first to try to talk to a stranger or someone will lay their eyes on him and fall in love. He has such an outgoing personality but no one would ever know the things that that “sweet face” or “very happy boy” has been throughout his journey with Progressive Infantile Scoliosis.
Camden was born on September 5, 2012. He weighed 9 pounds exactly and he was perfect. He was a big baby for such a small mommy, which we weren’t expecting at ALL. In December of 2012 my Grandma brought to my attention that Camden’s spine felt curved, and he would lean to his right. His ribs were also protruding on one side. I didn’t think much of it because every mom thinks her child is perfect. At Camden’s 4-month check-up we mentioned something to his pediatrician; she took a look at him and ordered an x-ray immediately. We took him the next day to have the X-ray at Children’s Healthcare of Atlanta. I asked to see the X-ray after it was taken and I knew soon after looking at it, something was wrong with my “perfect” child.
Camden’s pediatrician confirmed my worst fear, he had scoliosis and his curve was 31 degrees. She referred us to a local Pediatric Orthopedic Surgeon to examine Camden and review the X-Ray. The following week we visited the Pediatric Orthopedic Surgeon where I just wanted closure to this; I didn’t want him to tell me anything was wrong. As they took us back I noticed there weren’t many people in the office, I can’t describe it…it was just eerie. The doctor came in and had already reviewed the X-ray. He examined Camden, and told us that Camden had a 23 degree angle and that he believed it was his posture. He thought that Camden would grow out of it, to do a few stretches with him a few times a day and to come back in 3 months to see if it had gotten any worse. If it had indeed gotten any worse they would have to put him in a brace so he could grow straight for a few months. So I, a young mom who again thought nothing was wrong with my child and all of the people around me were crazy for saying this… believed him. I was so happy to go home with decent news and that he wouldn’t have to have surgery or anything of that magnitude. My mom did not believe him and insisted he was wrong. I told her to stop being negative, but she was adamant.
All I have to say is, Thank God for my mom! I honestly don’t know where Camden would be in this without her. She had already done some research prior to the appointment and found Heather Hyatt Montoya and Shriner’s Children’s Hospital in Greenville South Carolina. We scheduled an appointment with a Pediatric Orthopedic Surgeon at Shriner’s for a second opinion and I was not looking forward to it, at all. I read the stories on infantilescoliosis.org and they sounded so much like Camden. I didn’t want to face the reality that something could be wrong.
The Pediatric Orthopedic Surgeon at Shriner’s read the X-ray. He said Camden’s curve was 33 degrees with an RVAD of 35 and wanted another X-ray in 6 weeks to confirm or deny that the curve was “Progressive”. He stated that with an RVAD of 35, it was most likely “Progressive” as per Dr. Min Mehta’s study.
The MRI was completed before the next X-ray at Shriner’s and nothing was abnormal (no underlying cause for the scoliosis) with Camden’s spine! Great news!
The longest 6 weeks of my life passed, and we were ready to visit Shriner’s again. His curve had progressed to a 44 degree angle, 11 degrees in 6 weeks! I was shocked! He indeed had Progressive Infantile Scoliosis. Camden was placed in a Mehta cast a few weeks later, on April 11, 2013. Camden was only 7 months old, at that time he the youngest infant his Pediatric Orthopedic Surgeon had ever casted. It was so hard to watch my baby go through that, but the alternative (surgery, traction etc.) would have been much worse.
Camden was casted every 8-10 weeks with no break. At Camden’s 7th casting appointment his doctor examined him and said he was ordering an X-ray to be done at his next preop. Keep in mind, his Pediatric Orthopedic Surgeon will NOT X-ray unless he sees no visible signs of the scoliosis due to the overexposure of radiation to such a little body. This was HUGE!!!
On July 2, 2014 Camden had a standing X-ray out of cast. HIS SPINE WAS STRAIGHT! The following day he was placed in his 8th cast for 4 weeks then he will be molded for a removable brace that he will wear 22 out of 24 hours per day to maintain his straight spine. We can see light at the end of the tunnel; our journey was nearing an end.
At Camden’s checkup with his Pediatrician, we ask how many cases of Progressive Infantile Scoliosis they have seen. The response was “None, he is the first one we’ve seen in our practice. We’ve seen it in older children, but never a baby”.
At one Camden’s preop visits with his Pediatric Orthopedic Surgeon, a statement was made that struck me….A baby grows half their height by the time they are two, it takes another 15 (+/-) years to grow the other half. If a baby has Progressive Infantile Scoliosis, the most crucial time would likely be in the first two years of life, during the fastest growing stage.
Awareness, education and early detection are key to saving our baby’s spines.
Thank you Heather for all you do!
by mmcnett | Mar 20, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Breann was born in 1997. She was approximately five weeks premature and weighed 2420 g length 49 cm, head Her Apgar scores were 8. She was noted to cry spontaneously but her color remained dusky and she was given blow-by oxygen followed by mask CPAP because of diminished breath sounds. Following these interventions she improved in color. Because of her prematurity, ongoing oxygen requirement, and apnea she was taken to the newborn intensive care unit and placed in an oxygen-concentrating hood. Her initial exam showed the spine as being straight and no defects in the sacral area. But it was noted that she had a right hip click. No evidence of scoliosis was diagnosed until she was three months old.
She started out as a fighter and continues to do so. Her mother was her strongest advocate from the time she gave birth to Breann until she died in an accident on October 28, 2001. As Breann’s grandmother, I have vowed to continue her mother’s battle to help Breann through this ordeal of infantile scoliosis along with the support of our family.
Other problems soon arose for Breann. On January 20, 1997, it was noted that Breann had a small 1 cm hemangioma on her left upper arm. On March 3, Breann’s hemangioma was larger and she was diagnosed with probable fifth’s disease with resultant eczema. The hemangioma was surgically removed at three months. Breann was also x-rayed because of a persistent cough. Levoscoliosis of the thoracic and lumbar spine were found. Her curve was at 40 degrees by this time.
In May, at the age of four months, Breann showed evidence of head malformations. One side of her head appeared to be growing more than the other and one ear was larger. After a local doctor in Grand Junction examined her and could not identify the cause of the abnormalities (he at first suspected down’s or another syndrome), Joyce took Breann to Denver. She was examined at Columbia Presbyterian/St. Luke Medical Center and was found to have no syndromes. However, her curvature had increased to 45 degrees. Her neck lacked about 25 degrees of full rotation at four months and stretching exercises were prescribed for her. Breann’s mother worked diligently with the stretches several times a day and within a few months Breann’s range of motion had improved.
In August, at age of seven months her curvature had increased to 53 degrees. She was not yet able to sit up unassisted.
In November, at age ten months her curve was from T7 to L2 at 55 degrees. Her rib symmetry was also more apparent now. No cast or brace was yet recommended by the doctors. Breann’s mother was insistent that something be done. She continued to stay in contact with the doctor in Denver, but didn’t get immediate results. She also was spending time researching this condition, searching for methods to help Breann.
Finally after pressing the issue in February at the age of 13 months Breann entered the hospital in Denver and was placed in a Risser cast. Under anesthesia, pressure was applied to her spine and x-rays showed the curvature was pushed down to 32 degrees with the applied cast.
In March at age 14 months her second cast was applied. Her curve had gone back up to 45 degrees and with the cast was pushed back down to 30 degrees. Every time a new cast was applied, Breann had to under go anesthesia.
In April, (15 months) Breann was fitted in a TLSO brace in place of a cast. Joyce was exited about this because Breann could now have a bath! The brace was designed to come off for only a short period of time a day (about one hour). However, this brace did not work well. The Velcro straps wouldn’t hold and Breann had a hard time tolerating it.
She was place in yet another cast, which brought her curve back down to 30 degrees. In July, because of growth, her cast of only one month was removed and she was placed in yet another cast. Two months later, she once again had outgrown her cast and a new one was applied at Presbyterian/St. Luke’s in Denver. At this time, her curve was at 45 degrees in a cast and it was pushed back down to the low 30’s in the new cast. In October, only four weeks later, she was taken to Denver for another cast change because of growth. Her x-ray showed her curve at 48 degrees when she entered and it was pushed down to 28 degrees with the new cast. The doctors began to give Breann a week off between casts because of some rash and skin sores.
In November 1998, Breann was taken to Denver to have another Risser cast applied. After being out of a cast for only one week, her curve was now at 67 degrees, the highest it has ever been. This continued again in January 1999 (going in her curve was at 48 and after the new cast was applied it was down to 32 degrees.)
The casting helped maintain the curve and keep it from escalating. Her curve remained between 55 and 65 degrees which was a very large curve for such a small child.
Joyce continued to take Breann to Denver to have Risser casts applied and repaired frequently, throughout the year 2000.
In the summer of 2000, Breann’s mother and I flew to Shriners Hospital in Salt Lake City, Utah, so see the French doctor, Dr. Dubousset. We were hoping that a date for surgery could be set. However, after meeting with him and with Dr. D’Astous, we were told that Breann would have to wait for any surgery. She needed time for her lungs to mature and for her to grow as well. The recommendation was for Breann to be in the hospital for a few months, with what at first seemed to be a barbaric procedure. Joyce and I were stunned at the slides shown to us by the French doctor. A halo with eight screws was to be attached to Breann’s head with weights being added at intervals, to stretch her spine and lessen the curve. She was also to be placed in a turn buckle cast. We knew that this alternative was necessary and we trusted Dr. D’Astous’ recommendation as well. So, on October 2, 2000, at the age of 3 ½, Breann was admitted to Shriners Hospital where she remained until mid-January, 2001. She spent all the holidays there (Halloween, Thanksgiving, Christmas, New Year’s and her birthday!). Her mother remained by her bedside all this time, sacrificing all she had to help her baby. Joyce had to leave her other two children at home with family, and only took short breaks to come home to visit them when either myself or her mother could come and be with Breann. Joyce devoted her life to Breann.
When Breann left the hospital she was fitted for a brace with neck support that was designed in France and has maintained a curve around 45 degrees. It was a wise decision to have Breann be a part of this procedure, and we are hoping it is buying her the time she needs. We are very grateful for the care we continue to receive from Shriners Hospital and Dr. D’Astous.
Breann has a daily routine of treatments and exercises she follows that is a part of her progress. She does daily breathing exercises with a Bi-pap machine four times a day for 15-20 minutes, uses an inversion table 2-3 times a day, temporal mandibular disorder preventive exercises several times a day, swim therapy, cranial sacral therapy, massage, warm water treatments, etc. We are determined to strengthen and maintain her health. She is an incredible child.
Sincerely,
Lillian Blackman
Breann’s Grandmother
October 2003 Update
Breann has been in her current brace for 2 ½ years. In July, 2003, a visit to Shriner’s Hospital in Salt Lake City showed that her curve was approximately at a 57 degree curve. She is maintaining her curvature and it has not gotten worse since she was fitted with this brace. She continues to grow at a normal rate, and now weighs 50 pounds and is 4 foot ½ inches tall. She is now six years old, and will turn 7 in January 2004.
Part of Breann’s success is due to her continued therapy and exercises that we are consistent in maintaining. Breann has swim therapy every week at a local hospital to strengthen her muscles, increase lung capacity and improve flexibility.
Breann was staffed with an IEP at her elementary school where she is a first grader. Part of the IEP includes a teacher working with her daily, assisting her in the classroom and in stretching exercises. For about 30 minutes a day, the teacher has Breann hang and stretch from a bar to stretch her back, practice yoga stretches, and continues with neck and jaw exercise. This routine has increased Breann’s mobility and flexibility, as well has her thoracic rotation.
Along with the daily stretches and exercises, Breann uses a bi-pap breathing machine four times a day for about 20 minutes at each session. Her lung capacity and endurance continue to increase. She is an active child that enjoys and participates in most physical activities appropriate for her age. Even though she wears her brace for 23 out of a 24 hour day, this does not hinder her from riding a bike, running, and playing.
Breann has asthma and allergies that we continue to treat her for. She is highly allergic to smoke, cat dander, and some plants, as well as perfumes. She often gets respiratory illnesses accompanied by high fevers due to her weakened immune system. When she is exposed to any of the above allergens, it often results in a severe cough and allergic reaction that keeps her ill for days. She uses inhalers and a nebulizer often to overcome these reactions. Our hope is that she will outgrow these allergies.
Since Breann is growing at a normal rate, Dr. D’Astous expects she will need to be fitted for a new brace within the next few months. Our hope is that she will continue to be successful with a brace so that surgery can be prolonged until she is older.
