I only have limited experience, but we did use Johns Hopkins.
Johns Hopkins Children's Hospital (David Rubenstein Child Health Building):
I loved them. We saw all the doctors and they are all great. We found out they suspected Sadie had CF on tuesday at the pediatrician's office. She called them, Dr. Mogayzel had an opening for friday morning, we had the sweat test and knew for sure she had CF by friday afternoon. Her first appointment was the following monday. They were great about getting her tested, starting her meds, answering all our questions, and easing our fears as best they could. My personal fave was Dr. Mogayzel and Dr. Paranjape. Dr. Zeitlin does a lot of the trials, so it's always interesting talking to her. And Dr. Rosenstein has been around for awhile, so he knows his stuff, even if he is a little abrupt. The CF nurse, Donna, is very helpful and always returned our phone calls (even when we were in NY and Sadie had a freak fever and we had to go to the ER and see a NY pediatrician to follow up). We didn't have too many interactions with the PT lady or the social worker, but I remember them both being really nice. Their nutritionist was ok, but I think she left. Anyways, I can't say enough good things about them.
Portsmouth Naval Hospital (Children's Specialty Clinic):
I admit, I miss our Johns Hopkins doctors and staff, but the Portsmouth crew is alright. They seem a little disorganized sometimes and people always seem to be coming and going, but they always return our phone calls. The nurse practioner I didn't care for, left, so that makes it better too. I hate that they are located in a hospital, all the way in the back, and you have to pass through the germ-infested pharmacy to get to them. But short of a separate entrance, I can't really complain. Dr. Lee is very nice, and Ruthie and Robin really go out of their way to respond to all our questions. When Sadie needed her H1N1 flu shot, the place I finally found it, wouldn't give it to her without a note from her doctor about her CF. I was able to call Ruthie and she faxed it right over to them within a few minutes. The social worker is wonderful and very helpful. She's very knowledgeable about programs to help out CF families, and if she doesn't know she'll find out. She's really great, and I like her better than the one at Johns Hopkins, actually. I like the nutrionist here better as well, she has alot more ideas and tips for packing in the calories, but I think the one at Johns Hopkins didn't really want to be there, so that is why she isn't anymore. The physical therapist is nice, she's also the one that does the weighing in and stuff. We don't talk to her too much here either though, but she's always available to give us a new percussion toy if we need it.
Anyways, I hope that helps. If we were living in the Baltimore-DC area, I would defnitely be returning to Johns Hopkins.
Johns Hopkins Children's Hospital (David Rubenstein Child Health Building):
I loved them. We saw all the doctors and they are all great. We found out they suspected Sadie had CF on tuesday at the pediatrician's office. She called them, Dr. Mogayzel had an opening for friday morning, we had the sweat test and knew for sure she had CF by friday afternoon. Her first appointment was the following monday. They were great about getting her tested, starting her meds, answering all our questions, and easing our fears as best they could. My personal fave was Dr. Mogayzel and Dr. Paranjape. Dr. Zeitlin does a lot of the trials, so it's always interesting talking to her. And Dr. Rosenstein has been around for awhile, so he knows his stuff, even if he is a little abrupt. The CF nurse, Donna, is very helpful and always returned our phone calls (even when we were in NY and Sadie had a freak fever and we had to go to the ER and see a NY pediatrician to follow up). We didn't have too many interactions with the PT lady or the social worker, but I remember them both being really nice. Their nutritionist was ok, but I think she left. Anyways, I can't say enough good things about them.
Portsmouth Naval Hospital (Children's Specialty Clinic):
I admit, I miss our Johns Hopkins doctors and staff, but the Portsmouth crew is alright. They seem a little disorganized sometimes and people always seem to be coming and going, but they always return our phone calls. The nurse practioner I didn't care for, left, so that makes it better too. I hate that they are located in a hospital, all the way in the back, and you have to pass through the germ-infested pharmacy to get to them. But short of a separate entrance, I can't really complain. Dr. Lee is very nice, and Ruthie and Robin really go out of their way to respond to all our questions. When Sadie needed her H1N1 flu shot, the place I finally found it, wouldn't give it to her without a note from her doctor about her CF. I was able to call Ruthie and she faxed it right over to them within a few minutes. The social worker is wonderful and very helpful. She's very knowledgeable about programs to help out CF families, and if she doesn't know she'll find out. She's really great, and I like her better than the one at Johns Hopkins, actually. I like the nutrionist here better as well, she has alot more ideas and tips for packing in the calories, but I think the one at Johns Hopkins didn't really want to be there, so that is why she isn't anymore. The physical therapist is nice, she's also the one that does the weighing in and stuff. We don't talk to her too much here either though, but she's always available to give us a new percussion toy if we need it.
Anyways, I hope that helps. If we were living in the Baltimore-DC area, I would defnitely be returning to Johns Hopkins.