Our baby came into the world on January 9, 2009. She was perfect, a petite little doll.
From the beginning whenever she was laying down or holding her she always seemed to be curled up in a ball. We thought that must just be a comfortable position for her after spending the past 9 months in (utero) a little ball in mommy’s tummy. We shrugged it off. She was also a baby that spit up alot, which got worse when we started her on formula. Concerned we took her to the doctor to have her checked out. Doctor sent us for a GI series – which did not show any gastric abnormalities. She was diagnosed with reflux and given Reglan and switched to special formula. After reading all the scary stories on tardive dyskinesia as a possible side effect of Reglan use, we decided to discontinue this medication. Her spitting up and gas issues continued but we held our own with Mylicon drops and spit up rags.
As she grew, which seemed slower than her older sister, she still seemed to be balled up, and her right shoulder blade began to stick out in back. We asked her pediatrician about it – but she didn’t seem too concerned. She checked her hips and leg length and everything seemed symmetrical so she felt everything was fine. At her 6 month well baby her doctor checked her hips and leg length again. I appeared to be fine, but to make us feel better an xray of her clavicle was ordered. The xray of her clavicle came back OK, but what they missed, since they were focusing on the clavicle was the fact that her spine was curved. How did they miss this? How could they not have told us? We returned to the doctor on her next scheduled visit and told her we were still concerned about her back – we showed her again how her right shoulder blade seemed to protrude so she referred us to OU Childrens Hospital in Oklahoma City.
It took 6 weeks to be seen, at which time they took xrays of her spine and informed us that she had a significant curvature of her spine 45*. They stated that usually if a child has a curve of this magnitude there is an underlying cause, such as tethered cord, or other syndromic conditions. They scheduled an MRI – another 6 week waiting period.
The doctor called with the results of the MRI and stated that everything appeared normal. Thank God! But what about the curve? He scheduled us to come back in 6 weeks to see if the curve was progressing. Okay so now we have wasted 18 weeks. In those 6 weeks I hit the internet looking for treatments, answers, etc. Some of the stuff I read really scared me. This is a potentially life shortening, fatal disease, with no cure? What?
I came across the ISOP website and found hope in my despair. I read everything on the website, I contacted Heather, as I needed to be ready to slam the doctor (be prepared) with all of the questions I needed answers to. She told me important things to ask, how to have a proper xray taken, etc. We went to that appointment loaded with a stack of questions. When I asked him if he knew of Dr. Mehta’s Early Treatment Method of EDF Casting, he mentioned that he had heard of it, and that one of his colleagues had been trained in it, but he didn’t think that was appropriate at the time – come back in 4 months and we will recheck her. I asked him to give our file to the doctor that had been trained in Dr. Mehta’s Early Treatment Method, and to have him contact us. Of course he never did.
We were furious when we left that appointment. We immediately went home and contacted Shriners in Salt Lake City. They had us fill out an application and fax it to them. We then bundled up all of her xrays and MRI results and sent it to them with a cover letter and a picture. We were given a date of January 27, 2010, she would be almost 13 months by this time. All we could think about was “have we missed the best timeframe for treatment?”. When we realized that this would only be a consultation and not a casting we called and asked if her xrays and MRI results could be used and could we skip the consultation and go straight to casting. It was approved and we had a casting date of February 11, 2010. Unfortunately our baby is/was also prone to allergies and ear infections, and yes she ended up with a full blown ear infection the week before casting. They would not allow us to get the cast – we would have to reschedule. We were heartbroken!
We took her to an ENT and we were able to get tubes put in her ears on February 16, 2010. Our casting was rescheduled for March 11, 2010. We had only lost a month. “Time is ticking” is all we had in the back of our heads. We got our 1st EDF plaster cast (covered w/ 1 layer of pink fiberglass) on March 11, 2010, and we were so excited to finally get started! We were able to take her back to the hotel that night, but we were so unprepared for the emotional effect it would have on us. At dinner, she couldn’t sit in a high chair, she couldn’t reach her food, she couldn’t really turn her head very far to the right or left, as the shoulders came up so high. We cried for what she couldn’t do. We went back to the hospital the next day – and they made several adjustments to the cast. They ended up cutting one shoulder completely off (we called it her DIVA cast), lowering the neckline in the back and front, which made it more comfortable for her. We went home to start our new casting life.
The first couple of weeks were the hardest, she had to gain strength to hold herself up in the cast, she had to relearn her balance, and new ways to do things. We trained the daycare staff on diapering technique and how to handle her. Within 3 weeks our life was completely normal. She did not let the cast slow her down at all. She can do almost everything that any other child her age can, and being the age she is, she doesn’t know to miss swimming or sand yet. She did miss her baths though.
We have returned to Salt Lake City 3 times averaging every 8 weeks. We got our 4th and final cast on September 27, 2010. During this casting she was molded for a brace. We will start brace wear on November 23, 2010. Our astounding results are summed up in a statement by one of our Doctors. When we asked him about the measurements that they put on the xray that show the degree of curvature on the spine, all he could say was “We couldn’t put any measurement on this one – she is at zero in this cast – she is PERFECTLY STRAIGHT!”
So if you have an infant or toddler with Progressive Infantile Scoliosis, please do not “hope for the best,” or sit and “wait and watch,” for months for it to correct itself, as some doctors may advise. Please seek a consultation with a doctor trained and practicing Early Treatment with Dr. Mehtas EDF casting. Our baby, who is now a toddler went from a 40* degree Cobb angle to 0* in 6 months, and her rotation is completely resolved. – This method is proven and it does work!!!!!!!
We are forever indebted to Dr. Mehta, ISOP/Heather – and The Doctors and Staff at Shriners in Salt Lake City.