Guest guest Posted June 10, 2010 Report Share Posted June 10, 2010 6 suggestions: 1)Go to the MDA - find a clinic near you- just enter your zip code. 2)Find an orthopedist or neurologist in private practice. (see below_) 3)Go to another hospital/teaching institution. (see below) 4)Contact Whitney Kreps, CMT Support Group Leader in Dallas at sag_dallas@... she may know more orthopedists and neurologists there. 5) T Iannaccaone at Children's is a specialist in CMT. Perhaps contact her directly. 6)Or consider going to Austin or Galveston. C Buck, MD Physical Medicine & Rehabilitation (Pediatric & Adult) 4201 Bee Cave Rd, Suite C-106 Austin, TX 78746 Tel: 512-279-2386 Fax: 512-279-2387 W Brodsky, MD Orthopedics Orthopaedic Associates of Dallas 411 N Washington Suite 7000 Dallas, TX 75246 Tel: 214-823-7090 Fax: 214-823-1644 E Hansen, MD Orthopedics, Hand Surgeon Orthopaedic Associates of Dallas 411 N Washington Suite 7000 Dallas, TX 75246 Tel: 214-823-7090 Fax: 214-818-1444 Phala A Helm, MD Physical Medicine & Rehabilitation University of Texas SW Medical Center 5323 Harry Hines Blvd Dallas, TX 75390 Tel: 214-648-2288 T Iannaccaone, MD, FAAN Pediatric Neurology Professor Children's Medical Center - Dallas 2350 Stemmons Fwy Suite 5074 Dallas, TX 75207 Tel: 214-456-5220 D Porter, MD Physical Medicine & Rehabilitation Baylor Institute for Rehabilitation 3505 Gaston Ave Dallas, TX 75246 Tel: 214-820-9593 Fax: 214-820-9339 N Rosenberg, MD Neurology University of Texas SW Medical Center 5323 Harry Hines Blvd Dallas, TX 75390 Tel: 214-648-3239 Fax: 214-648-6824 I Vengrow, MD, FAAN Neurology Neurological Doctors of Dallas 8210 Walnut Hill Ln Suite 616 Dallas, TX 75231 Tel: 214-345-1805 Gil Wolfe, MD Neurology Professor University of Texas SW Medical Center 5303 Harry Hines Blvd 4th Fl, Suite 100 Dallas, TX 75390 Tel: 214-645-8800 Fax: 214-645-8801 Tetsuo Ashizawa, MD Neurology University of Texas Medical Branch 301 University Blvd Galveston, TX 75555 Tel: 409-772-2646 Fax: 409-772-6940 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2010 Report Share Posted June 10, 2010 I would try a Shrine Hospital. Houston, Galveston or Shreveport all have Shrine Hospitals. The local Shrine Center probably helps with transportation and ANYTHING at the Hospital is free. It is definitely worth an exam by one of their doctors. If you need an application, let me know. L. Wichita, KS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2010 Report Share Posted June 10, 2010 If you have insurance go to a private doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2010 Report Share Posted June 10, 2010 Hi, Get a good lawyer quickly! Brigid .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Very little scares a hospital except a lawsuit, but something that does is a congressman. Have the local congressman intercede for you. With the anti-incumbent fervor, congress is bending over backwards to help constituents. Regards. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2010 Report Share Posted June 12, 2010 Please don't lose hope or patience with the CMT Centers of Excellence. They are truly the best place for your child to be seen. Unfortunately, their space and time is limited, and they cover large geographic areas. Their services are in very high demand. I am a CMT patient and parent, so I know the frustration you must be feeling. Just know you are doing the right thing and getting her the best you can do for her. If you feel the need to see someone sooner, perhaps the staff of the CMT Center of Excellence can assist with a referral. Mark > > I have a major problem. I live in the Dallas-Fort Worth area. I have passed on CMT2 to my four year old and it is progressing rapidly. Her balance is extremely poor causing falling and her foot is inverting, just as mine did. I don't want her to endure the same sort of problems I did such as massive callousing, pain, and eventually surgery to release the tendon. I have explained the problem to the Children's Hospital in Dallas, where she has an appointment in September, to please give us an earlier appointment to get her diagnosed and put in corrective bracing. THEY WON'T. I am so POed. Does anyone suggest anything? It is progressing to the point I believe in September it will be too late and surgery will be necessary and her falling may cause a major injury as she falls constantly. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2010 Report Share Posted July 11, 2010 I would suggest making her an appointment with an orthotist, she doesn't have to have the diagnosis of the CMT for them to set her up with braces. You could also take her to see a pediatric orthopedic surgeon for her inverted foot they would probably take one look at her and know there is something going on and treat her. I am actually going through the same issue, my 3 year old son has been showing signs since he was born, he was born with torticollis and had to do physical therapy when he was only 3 months old. Anyways the pediatrician he had then said he was better after the therapy, but this past year Hunter has been having so many issues, his new Dr. who I think has a lot more knowledge about neurological diseases told me at his 1st appt. with her that he had flat feet, knocked knees (uncommon for boys to have), an outoeing gait (Hunter actually sometimes walks on his ankles, it really freaks me out), and weak lower muscle strength, she also said he was " floppy " , then she told me he was 1 year delayed, I couldn't believe it I knew he was behind I was just shocked to hear how far behind, I don't have any other children so somethings I guess were hard for me to notice, so now she says she wants him in physical, occupational and speech therapy. I am almost positive he has CMT, me and my mom (his grandma) both have CMT1A. I live outside of Chicago so I called the only pediatric MDA Clinic we have to make him an appt. so he can be diagnosed and they couldn't get him in until October, I was like I can't wait that long, I know he's having orthopedic issues and at his age the faster they correct it the better because the older a child gets the more invasive the procedures get. When I was 15 was when I was diagnosed with CMT a couple months before that I was diagnosed with hip dysplasia, because I was already 15 I had to get major surgery. Anyways I asked the lady at the clinic if there was anything I could do to get him in earlier, she said I could get in earlier if instead of going to clinic I saw the neurologist in his office, that still couldn't get me until Aug.9th but I took it anyway and she said she would put me on the waiting list so that if someone else canceled their appt. they would give it to me. This can be really hard I know, you should do what you think is best for your child, and it sounds like you are. The waiting game can be awful, and I don't want to give you wrong or bad advice either I just wanted to share my story because I'm going through it to and I want you to know your not alone. > > I have a major problem. I live in the Dallas-Fort Worth area. I have passed on CMT2 to my four year old and it is progressing rapidly. Her balance is extremely poor causing falling and her foot is inverting, just as mine did. I don't want her to endure the same sort of problems I did such as massive callousing, pain, and eventually surgery to release the tendon. I have explained the problem to the Children's Hospital in Dallas, where she has an appointment in September, to please give us an earlier appointment to get her diagnosed and put in corrective bracing. THEY WON'T. I am so POed. Does anyone suggest anything? It is progressing to the point I believe in September it will be too late and surgery will be necessary and her falling may cause a major injury as she falls constantly. > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.