Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Hi Jama - thanks for the extra information about your family. Your story sounds very similar to so many of ours. I'm glad your ped did go ahead and give you a referral to see a specialist. Did he tell you if Luke had torticollis? We have so many members here who have driven or are driving 4-5 hours plus one way. I think the idea of going to NC and leaving the kids with family would really be idea. There is also a service called Angel Flight (which someone may have already mentioned) that helps people with airline tickets when they have to travel for medical treatment. Hopefully you will be able to find an ortho in one of those areas that can do the band for you. I live in Oklahoma so I'm afraid I cannot be of much help there. Best wishes and please keep us posted! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2002 Report Share Posted May 12, 2002 jamma, i'm just getting caught up on reading some posts, so i don't know how many people have responded to you so far. i live in Raleigh and took my daughter to see a pediatric neurosurgeon at Duke. he is NOT a fan of banding, suggested we continue repositioning, and didn't even do any measurements of emma's head. i ended up taking her to a craniofacial surgeon in Charlotte and also for a free evaluation at Cranial Tech in Charlotte. they both rated her plagio as moderate/severe (CT) and severe (the craniofacial surgeon). she got her band this past monday and when we went for our craniosacral therapy appointment yesterday, the therapist said she though she could already see improvement in emma's asymmetry! i don't know how long a drive Charlotte is for you, but so far we've been really, really pleased with the folks at CT. emma is my first child, so i can't really give any advice on your other concerns. if you have any other questions about NC options, i'd be happy to share any info i have. amy_coppedge@... best of luck to you. amy --- jbjoyner37664 <joyner@...> wrote: > I made a quick post yesterday asking for help > finding a doctor in > TN. Forgive me for not giving a better > introduction. Here is our > story. > > I have four children age 5 and under. Luke was born > Oct. 12th 2001. > While my parents were visiting for Christmas, my mom > noticed the > right side of Luke's head was flat. She was holding > him on her lap > in a sitting position with his back toward her. I > had not noticed > his head shape prior to this. After noticing his > head was flat, I > began to realize he kept his head turned to the > right at all times. > > At Luke's four month check up I mentioned the > problem to his ped. He > said it would round out with time, especially once > he started rolling > over. He said if the condition had not improved by > his 6mo check up, > he would refer us to a specialist. He did order > x-rays to rule out > tort. > > I wasn't really given any specific repositioning > techniques to try. > I did find some from doing research on my own. No > matter what I > tried Luke would get back to the side he wanted to > be on. > > At his 6mo check up Luke's head had improved some > but it was still > very flat and his ears were way out of line. At my > request, our ped > sent us to a neurologist in Knoxville, TN. He told > us he sees a case > like Luke's every 1-2 years. He suggested we see a > craniofacial > plastic surgeon and pursue a band. The surgeon he > had used in the > past is no longer taking pediatric patients. > According to him the > closest options are Chattanooga and Nashville. > These are 3 and 4 > hour drives from our home. > > I found the CAPPS website tonight. I emailed the > contact person in > TN and NC to see if they could help. My parents > live in NC. They > are only about 30 minutes from Duke Medical Center. > If I have to > drive 4 hours to Nashville, I would rather drive 4.5 > hours to there > house. They could keep my other 3 children and we > could save on > hotel costs. We have no family in TN. Have any of > you traveled long > distances? Did you have to take other children with > you? How often > did you have to make the trip? (I've read fittings > are done every 1- > 2 weeks!) > > Thanks for listening, > Jama > Mommy to 4 precious blessings > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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