Guest guest Posted May 6, 2011 Report Share Posted May 6, 2011 Please keep us posted and let us know if any more questions come up. We're here to help! HRH > Thank you for all the information. I hope to get the call today and set > up her MRI. If I don't hear form them by the end of the day, I'll call > them! @ , I have a feeling that Kyra's Condition is linked to her > syndrome. Our Ortho Doctor told us that their maybe a link from open > heart surgery and developing scoliosis. It puts a lot of pressure on the > back. Thank you for the information as well! I made a neurology > appointment, incase the MRI shows it is congenital. They said I can > always cancel and the first available was in July. I will continue to > lurk and post updates when I have new news. Thanks again! > >> >> Hello C.A.S.T Group, >> >> I can tell that this group is going to be of great resource and support >> for me and my Little Miss Magic. My name is and I have a 2.6 yrs >> old daughter, Kyra (Keer-ah). She was born in September 2008. To make a >> long story short at 2 weeks she was diagnosed with 22q11 deletion; AKA >> Digeorge syndrome. At 4 Months she started PT for torticollis, at 6 >> months she had open heart surgery to correct her tetralogy of fallot and >> repair a valve, at 18 Months she had tubes put in her ears and this past >> week she was diagnosed with Scoliosis. Her x-rays showed a 32 degree >> curve. When the doctor looked back at an x-ray taken a year ago, for >> her heart, he said the curve was minimal then. Due to her syndrome, she >> is developmentally delayed and thus walked at 21 months. Our next step >> is getting her MRI scheduled and the doctor talked about bracing her. >> She continues to receive PT, OT and Speech and attends an intervention >> preschool 2x a week for 3 hours. Like many of you, I hit the internet >> looking for information and what will be best for my daughter. We live >> in the San Diego, CA area and I have seen Loma University come up >> as possible Casting. Has anyone had any experience with LLU? Also. With >> the casting method, do the kids wear a brace afterwards and if so for >> how long? I am sure I will have more questions but I am just beginning >> to understand what is ahead and trying to stay focused. >> Many Thanks for your time! >> >> > > > Quote Link to comment Share on other sites More sharing options...
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