Lily was born April 12 2004. She was diagnosed with plageocephaly at approximately 8 months of age. She was placed in a corrective helmet by the orthopedic physician, which was worn 24/7 for 4 months. This corrected the flatness of her head and restored its shape.
At 13 months of age, Lily had just started to walk. We noticed that she only had fat rolls on one side and that one shoulder drooped just slightly lower than the other. Up to this point, no mention had been made to us about scoliosis by her pediatrician or her orthopedic physician. We suspected, however, that scoliosis may be the problem. We took her to her pediatrician and told her what we suspected and asked that her back be radiographed. The radiograph confirmed our suspicions. She was referred back to the orthopedic physician who ordered an MRI to rule out congenital problems, as well as more radiographs. In one radiograph, Lily being her sometimes less than cooperative self, shifted just right and brought one of her hips into the field. A very astute x-ray tech noticed that the hip was dysplastic. More radiographs confirmed the diagnosis of bilateral hip dysplasia. This we were told was an unusual situation. The orthopedic physician informed us that traditionally one of these problems is usually treated at the expense of the other. He said he wanted to treat them together which to his knowledge had never been done. He recommended a Spica brace and a TLSO brace to be worn together, although he admitted he was not certain how that would be done.
At this point, I spent every waking moment researching treatment options and outcomes. This eventually led me to www.abilityconnectioncolorado.org/newsite/infantilescoliosis. They sent us a video and other information. After careful scrutiny, and much deliberation, we felt like early treatment would be the best option for Lily.
Lily was admitted to Shriner’s Hospital in Salt Lake City. Her dr. in SLC also wanted to treat the hip dysplasia and the scoliosis together. She was first casted September 13th 2005. She was placed into a modified plaster SPICA/Risser cast to treat both the scoliosis and the dysplasia concomitantly. This was the first cast of its kind. She wore this cast for 2 months. All subsequent casts have been of plaster, and done on a size appropriate casting frame. Eventually, Lily was placed in a Craig Hip abduction orthosis to be worn during naps and at night.
Her progress is as follows:
September 13th 2005:
Pre-cast: COBB = 46
RVAD = 30
In-cast: COBB = 8
November 16th 2005:
In-cast: COBB = 14
March 6th 2006:
Out-of-cast: COBB = 20
In-cast: COBB = 11
June 28th 2006:
Out-of-cast: COBB = 20
In-cast: COBB = 5
Oct 5th 2006:
Out-of-cast: COBB = 7
In-cast: COBB = 0
Lily will undergo one more casting in December 2006 to be worn until April 2007. She will then be placed in a TLSO brace for the remainder of her treatment. Her hips have not made much progress until the Oct visit when slight improvements were noted. There has also been no regression or dislocation. Her hips will be monitored until the age of 4 or 5 at which time she will undergo surgery for the dysplasia if the hips have not ossified and formed correctly.
We are very grateful to have found the ISOP (Infantile Scoliosis Outreach Program) for the hard work that’s been done in keeping us all connected and informed. We are also very grateful to our Dr. and the wonderful staff at SLC Shriner’s Hospital for all their hard work and dedication.
Sincerely,
Mike and Heather
