Guest guest Posted June 16, 2012 Report Share Posted June 16, 2012 We go to Cleveland Clinic (only a couple more hours) and they are amazing with support and care / insurance coordination. Sent from my iPhone > We still have not found good neuro support or a team of doctors who can help us, it's all been one big mess waiting for appointments and trying to get insurance approval. We have decided to no longer depend upon our pediatrician to get us the help we need and trying to take things more into our own hands, and will just have to find a way to pay for it somehow insurance or not. We are thinking about the Cincinnati Children's Hospital considering it is about the closest location and have heard wonderful things. Although it is no doubt a great hospital we don't know exactly what kind of experience they have with things like PMG or Liss. > > Have any of you had any experience with this Cincinnati Children's Hospital? Are there any other hospitals you recommend? Doctors you recommend? Any information, suggestions, advice you can share would be so greatly appreciated. Please help this family find the specialists and help we need! Thank you. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2012 Report Share Posted June 16, 2012 I can't say enough wonderful things about Cincinnati Children's. We don't have personal experience with neuro. Ethan was diagnosed with BPP at University of Kentucky, and had a second opinion at Children's Hospital Boston with Dr. Walsh. But we did all of his future care at Cincinnati. He was seen by ortho for a heel cord lengthening and Botox treatments on his hand and leg, ENT for Botox on his salivary glands, and was seen every 6 months by his rehabilitation specialist there, Dr. Brad Kurowski. It was a long drive for us, but completely worth the trip. Until we went there, I never felt like Ethan had a doctor who really looked out for his entire overall health. We saw a pediatrician and lots of specialists, but Dr. Brad was the first doctor to look at every part of Ethan and understand what he needed. We now live in Iowa and have had to leave CCH behind, but if there were ever another surgery, or complication, we wouldn't hesitate to take him back there. We also worked with the Perlman Center at CCH to acquire Ethan's AAC device. They were great! If you have any other questions, please feel free to contact me! Kate Ramsdell Sent from my iPad > We still have not found good neuro support or a team of doctors who can help us, it's all been one big mess waiting for appointments and trying to get insurance approval. We have decided to no longer depend upon our pediatrician to get us the help we need and trying to take things more into our own hands, and will just have to find a way to pay for it somehow insurance or not. We are thinking about the Cincinnati Children's Hospital considering it is about the closest location and have heard wonderful things. Although it is no doubt a great hospital we don't know exactly what kind of experience they have with things like PMG or Liss. > > Have any of you had any experience with this Cincinnati Children's Hospital? Are there any other hospitals you recommend? Doctors you recommend? Any information, suggestions, advice you can share would be so greatly appreciated. Please help this family find the specialists and help we need! Thank you. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2012 Report Share Posted June 17, 2012 We use Cincinnati Children's and are happy with them. We are local. We use the special needs clinic and they get us appointments with who we need to see. All our docs work as a team! First few weeks were crazy with so many visits, but now it is nice! Connected by DROID on Verizon Wireless Children's Hospital? We still have not found good neuro support or a team of doctors who can help us, it's all been one big mess waiting for appointments and trying to get insurance approval. We have decided to no longer depend upon our pediatrician to get us the help we need and trying to take things more into our own hands, and will just have to find a way to pay for it somehow insurance or not. We are thinking about the Cincinnati Children's Hospital considering it is about the closest location and have heard wonderful things. Although it is no doubt a great hospital we don't know exactly what kind of experience they have with things like PMG or Liss. Have any of you had any experience with this Cincinnati Children's Hospital? Are there any other hospitals you recommend? Doctors you recommend? Any information, suggestions, advice you can share would be so greatly appreciated. Please help this family find the specialists and help we need! Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2012 Report Share Posted June 17, 2012 Dr Dobyns had us go to Detroit Dr Chugani he said the best neuro in the midwest. He is great and has access faster but does like testing. He was knowledgeable and educational emails you back quickly. Diane Sent from Samsung Conquerâ„¢ 4G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2012 Report Share Posted June 28, 2012 Thank you so much for your reply Kate, that is exactly what I was looking for. At first we were denied to go to Cincinnati but I just spoke to the pediatrician about it again and it looks like things have changed and they are accepting our insurance. So we are in now Cincinnati bound! I hope it will all go well, They have not called with the appointment date yet, so I am not sure how long of a wait it will be, but I will post again with news, results, and how the doctors and everything are after our appointment for anyone else that is curious about Cincinnati Children's Hospital. Also, you mentioned your son was diagnosed at University of Kentucky. Did you live in Kentucky? That is were my daughter was diagnosed, and where we live. Thanks again for the info! > > > We still have not found good neuro support or a team of doctors who can help us, it's all been one big mess waiting for appointments and trying to get insurance approval. We have decided to no longer depend upon our pediatrician to get us the help we need and trying to take things more into our own hands, and will just have to find a way to pay for it somehow insurance or not. We are thinking about the Cincinnati Children's Hospital considering it is about the closest location and have heard wonderful things. Although it is no doubt a great hospital we don't know exactly what kind of experience they have with things like PMG or Liss. > > > > Have any of you had any experience with this Cincinnati Children's Hospital? Are there any other hospitals you recommend? Doctors you recommend? Any information, suggestions, advice you can share would be so greatly appreciated. Please help this family find the specialists and help we need! Thank you. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2012 Report Share Posted June 29, 2012 *,* * * *Can you let us know who it is that you see at Cincinatti Children's so that we can add them to our list of preferred providers? You can send the names and phone numbers (if you have them) to Mel@.... * * * *Thanks for helping other parents find the help they need!* * * *Sincerely,* *Catrina Byrge * On Sun, Jun 17, 2012 at 7:46 AM, promised.son@... < promised.son@...> wrote: > ** > > > We use Cincinnati Children's and are happy with them. We are local. We use > the special needs clinic and they get us appointments with who we need to > see. All our docs work as a team! First few weeks were crazy with so many > visits, but now it is nice! > > > Connected by DROID on Verizon Wireless > > Children's Hospital? > > We still have not found good neuro support or a team of doctors who can > help > us, it's all been one big mess waiting for appointments and trying to get > insurance approval. We have decided to no longer depend upon our > pediatrician to get us the help we need and trying to take things more > into > our own hands, and will just have to find a way to pay for it somehow > insurance or not. We are thinking about the Cincinnati Children's Hospital > considering it is about the closest location and have heard wonderful > things. Although it is no doubt a great hospital we don't know exactly > what > kind of experience they have with things like PMG or Liss. > > Have any of you had any experience with this Cincinnati Children's > Hospital? > Are there any other hospitals you recommend? Doctors you recommend? Any > information, suggestions, advice you can share would be so greatly > appreciated. Please help this family find the specialists and help we > need! > Thank you. > > Quote Link to comment Share on other sites More sharing options...
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