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Umblehoon
Guest
Does anyone in the Philly area go to CHOP? We are looking to find some info on what it's like, as we are currently at St Christopher's and want to know whether this grass is greener on the other side of the road.
We don't use CHOP, but...what I would recommend is getting in touch with them and just going for a consult and feel things out. I've heard of a lot of CF adults doing that, and most clinics seem to be open to it, from what I've seen. Just think of it as a second opinion. I can tell you CHOP is a very highly regarded children's hospital. I believe they're ranked first for pediatric pulmonary in the US News rankings.
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Umblehoon
Guest
Thanks, pipersmom. The very high rankings CHOP has is one of the reasons we're considering switching, but even the best hospital in the world could be less capable than others in certain specialized areas, so we're trying to gauge the experiences of people who have firsthand experience with care, there. I like your suggestion of going for a consult to feel them out; we just might do that. Thanks 
We go to CHOP and no the grass is not alwahs greener on the other side. You cannot go by the list of CF clinic pumonologists zince a dew docs see amost all the CF latjents but most or all the pulmonogists are lisged for CF clinic. If your child fits a larticular doctor's research interest great, but if not you will not get the time of day. You always get fellows when you call after hours. Customer service does not exist.
The up side is the new CHOP doctor my daughger sees got PFT FEV1 up from 5p to 100 percent. Best wishes
The up side is the new CHOP doctor my daughger sees got PFT FEV1 up from 5p to 100 percent. Best wishes
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Beaz
Guest
For about 18 mos we took my son to St. Chris and only left to go to CHOP to follow his doctors there about 14 years ago. It's impossible for me to know what St. Chris is like now, but the thing we have always missed the most is how warm and friendly everyone there is, from the biggest doc to the janitors. That especially makes a difference when you are in patient. CHOP is a huge, urban teaching hospital with all that implies, both good and bad.
We know all the doctors , some for almost 17 years. You get to know all of them through in-patient stays mainly. Ditto for the fellows. We've always been impressed with their knowledge, responsiveness and commitment; it's a top program and they get the cream of the crop. The nurse practitioners are excellent and very experienced too.
There is a high level of consistency in the treatment plans from one dr to the next and they seem to communicate/consult with each other quite a bit, so in some instances you are getting the benefit of the group brain.
Have we had frustrations and disagreements over the years? Ha, you bet. No place is perfect. CHOP is huge, with many cracks to fall through, so you have to be alert and proactive and not afraid to speak up (politely!)
Having a consult is a great idea!
Good luck with your decision.
We know all the doctors , some for almost 17 years. You get to know all of them through in-patient stays mainly. Ditto for the fellows. We've always been impressed with their knowledge, responsiveness and commitment; it's a top program and they get the cream of the crop. The nurse practitioners are excellent and very experienced too.
There is a high level of consistency in the treatment plans from one dr to the next and they seem to communicate/consult with each other quite a bit, so in some instances you are getting the benefit of the group brain.
Have we had frustrations and disagreements over the years? Ha, you bet. No place is perfect. CHOP is huge, with many cracks to fall through, so you have to be alert and proactive and not afraid to speak up (politely!)
Having a consult is a great idea!
Good luck with your decision.
Justinsmama
New member
We left CHOP a couple of years ago because my son was difficult to diagnose (passed sweat test and only 1 mutation at the time) and went to Hopkins after the first of a string of 4 pneumonias where his doctor knew the mutation (had another patient with it) and diagnosed him without genetics. He got the treatment he needed. Just lucky that the doctor we needed at the time was at Hopkins. We have been happy there. I have to say though that we stayed at CHOP for everything else (except hemo). Justin has complex issues. CHOP GI has been our salvation. They have been very attentive and we are thrilled. Now that he is genetically confirmed, we would be more than comfortable going back to CHOP. Timing just wasn't right when we were there. I agree with Beaz, there are goods and bads with CHOP as well as anywhere else. For us, there was little or no communication between specialties. As our ped says, "the brightest doctor to see Justin is the last one because he has all the input of the rest".
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Umblehoon
Guest
Thank you all for your comments. I have no idea what we're going to do, still, but we have a better idea of what might (and might not!) be different, there. Thanks again
Hi, My child has an unusual case. She has 2 cf genes but one is extrememly rare and they don't know much about it. She passed her sweat tests and has no symptoms as of yet. Two years ago, when we got an inconclusive newborn screening back, we called both CHOP and St Chris's to see where we could get in for a newborn sweat test. St Chris's called back immediately and set us up with an appointment just a couple days later. CHOP never called us back. Everyone we've encountered at St Chris's has been extrememly nice and setting up appointments has been easy. We decided to go to CHOP for a second opinion (consult) a few months ago and it was the same deal - no call back. I finally got ahold of someone to set up an appointment and coordinated getting all the test results from St Chris's over to CHOP. (So my child wouldn't need to have tests repeated.) St Chris's sent the info over to CHOP multiple times and somehow it got lost in a blackhole at CHOP. Finally someone at CHOP told me their fax machine was acting up. (This was after many phone calls between me and both hospitals and it was quite frustrating.) When went to the appointment at CHOP the doc said my child does not have CF, so there is no need to follow her. However, at St Chris's she is followed every 6 months to make sure if symptoms arise down the road we catch them right away. She has a CRMS diagnosis (from St Chris's) but genetically has 2 CF mutations. Like I said it's an unusual case. In my experience I did not feel that the grass was greener at CHOP. While I liked the dr that we saw at CHOP, I felt the scheduling was a nightmare. I like that our doctor at St Chris's is being cautious with my child in case something arises down the road - as there is so little known about our genetic combination. Additionally the nurse and gentic counselor we've met with at St Chris's are great and scheduling has been easy. Good luck with whatever you decide!