Choosing a Center - CHOP vs duPont

A

alkthatcher

New member
I'd really like some advice on deciding to keep my son at A.I. duPont Hospital for Children or transfer his care to Children's Hospital of Philadelphia. It's very difficult to find rankings or "best of CF Centers" lists on the Web.

Our son has been a patient at both a CHOP affiliate NICU and then duPont. We recently received the official "atypical CF" diagnosis, our son has a very rare mutation. The Drs at duPont have never seen it before, nor do they seem too familiar with abnormal mutations in general. We are considering transferring to CHOP because one ranking I saw from US News and World Report (the only one I could find) says they are the number one pulmonary children's hospital in the country. And chronic lung disease as always been one of my son's main issues. He was born premature at 26 weeks, 1 lb 4 oz and is now 5 months, 9 lbs.

I plan to ask my CHOP-affiliated pediatrician what he thinks. If I get to speak with a Dr. at CHOP what should I ask other than their experience with atypical cf and rare mutations?

Thank you in advance.
 
A

alkthatcher

New member
I'd really like some advice on deciding to keep my son at A.I. duPont Hospital for Children or transfer his care to Children's Hospital of Philadelphia. It's very difficult to find rankings or "best of CF Centers" lists on the Web.

Our son has been a patient at both a CHOP affiliate NICU and then duPont. We recently received the official "atypical CF" diagnosis, our son has a very rare mutation. The Drs at duPont have never seen it before, nor do they seem too familiar with abnormal mutations in general. We are considering transferring to CHOP because one ranking I saw from US News and World Report (the only one I could find) says they are the number one pulmonary children's hospital in the country. And chronic lung disease as always been one of my son's main issues. He was born premature at 26 weeks, 1 lb 4 oz and is now 5 months, 9 lbs.

I plan to ask my CHOP-affiliated pediatrician what he thinks. If I get to speak with a Dr. at CHOP what should I ask other than their experience with atypical cf and rare mutations?

Thank you in advance.
 
A

alkthatcher

New member
I'd really like some advice on deciding to keep my son at A.I. duPont Hospital for Children or transfer his care to Children's Hospital of Philadelphia. It's very difficult to find rankings or "best of CF Centers" lists on the Web.
<br />
<br />Our son has been a patient at both a CHOP affiliate NICU and then duPont. We recently received the official "atypical CF" diagnosis, our son has a very rare mutation. The Drs at duPont have never seen it before, nor do they seem too familiar with abnormal mutations in general. We are considering transferring to CHOP because one ranking I saw from US News and World Report (the only one I could find) says they are the number one pulmonary children's hospital in the country. And chronic lung disease as always been one of my son's main issues. He was born premature at 26 weeks, 1 lb 4 oz and is now 5 months, 9 lbs.
<br />
<br />I plan to ask my CHOP-affiliated pediatrician what he thinks. If I get to speak with a Dr. at CHOP what should I ask other than their experience with atypical cf and rare mutations?
<br />
<br />Thank you in advance.
 
A

auntcob

New member
Hi--I know from other posts that some people are very pleased with CHOP. I wasn't thrilled with our experience. We are in Lancaster PA and went to CHOP for a sweat test (borderline results) and then full genetic sequencing through genzyme--they do not use ambry. When DS's results came back, he had two mutations which the lab labeled as benign. I was told, "as far as we are concerned he does not have Cf." He was never seen by a doctor at CHOP. Took him to another CF center for a second opinion--they spent a full day with him and dx him with "cf variant." Given the complexity of the disease, I think making a dx without seeing a patient is irresponsible.

That was just my experience. Like I said, others have had great experiences there.

Good luck,

Chris
 
A

auntcob

New member
Hi--I know from other posts that some people are very pleased with CHOP. I wasn't thrilled with our experience. We are in Lancaster PA and went to CHOP for a sweat test (borderline results) and then full genetic sequencing through genzyme--they do not use ambry. When DS's results came back, he had two mutations which the lab labeled as benign. I was told, "as far as we are concerned he does not have Cf." He was never seen by a doctor at CHOP. Took him to another CF center for a second opinion--they spent a full day with him and dx him with "cf variant." Given the complexity of the disease, I think making a dx without seeing a patient is irresponsible.

That was just my experience. Like I said, others have had great experiences there.

Good luck,

Chris
 
A

auntcob

New member
Hi--I know from other posts that some people are very pleased with CHOP. I wasn't thrilled with our experience. We are in Lancaster PA and went to CHOP for a sweat test (borderline results) and then full genetic sequencing through genzyme--they do not use ambry. When DS's results came back, he had two mutations which the lab labeled as benign. I was told, "as far as we are concerned he does not have Cf." He was never seen by a doctor at CHOP. Took him to another CF center for a second opinion--they spent a full day with him and dx him with "cf variant." Given the complexity of the disease, I think making a dx without seeing a patient is irresponsible.
<br />
<br />That was just my experience. Like I said, others have had great experiences there.
<br />
<br />Good luck,
<br />
<br />Chris
 
H

hmw

New member
I just posted to you on your other thread asking about the genetic testing, sweat test, etc and then saw your thread here. I did have in the back of my mind that CHOP has been a bit problematical at times about mutations they do not know a lot about (Chris above is not the only one who has had this issue.) I wouldn't rule CHOP out, simply because they have SUCH a good pulmonary dept and your baby has such significant lung disease and he may benefit a great deal from their expertise... but it is something that occurred to me. As I asked on my other post, what was his sweat test and newborn screen? Another center to consider is Johns Hopkins in Baltimore. They are known for taking an interest in rare mutations cases...

What are his mutations? Has this rare mutation never been heard of at ALL (never recorded in the mutations database at sick kids, never mentioned in published literature, etc), or just never heard of by the drs at DuPont?
 
H

hmw

New member
I just posted to you on your other thread asking about the genetic testing, sweat test, etc and then saw your thread here. I did have in the back of my mind that CHOP has been a bit problematical at times about mutations they do not know a lot about (Chris above is not the only one who has had this issue.) I wouldn't rule CHOP out, simply because they have SUCH a good pulmonary dept and your baby has such significant lung disease and he may benefit a great deal from their expertise... but it is something that occurred to me. As I asked on my other post, what was his sweat test and newborn screen? Another center to consider is Johns Hopkins in Baltimore. They are known for taking an interest in rare mutations cases...

What are his mutations? Has this rare mutation never been heard of at ALL (never recorded in the mutations database at sick kids, never mentioned in published literature, etc), or just never heard of by the drs at DuPont?
 
H

hmw

New member
I just posted to you on your other thread asking about the genetic testing, sweat test, etc and then saw your thread here. I did have in the back of my mind that CHOP has been a bit problematical at times about mutations they do not know a lot about (Chris above is not the only one who has had this issue.) I wouldn't rule CHOP out, simply because they have SUCH a good pulmonary dept and your baby has such significant lung disease and he may benefit a great deal from their expertise... but it is something that occurred to me. As I asked on my other post, what was his sweat test and newborn screen? Another center to consider is Johns Hopkins in Baltimore. They are known for taking an interest in rare mutations cases...
<br />
<br />What are his mutations? Has this rare mutation never been heard of at ALL (never recorded in the mutations database at sick kids, never mentioned in published literature, etc), or just never heard of by the drs at DuPont?
 
R

RistaGirly

New member
I'm 22, I started out at CHOP, Dr. Thomas Scanlin was there. He has a great "program" i guess you can call it. CHOP was always really good. I however moved on, and followed Dr Scanlin when he changed hospitals. He is now at Bristol Myers Squibb Children's which is part of Robert Wood Johnson University Hospital in New Brunswick, NJ. The staff is fantastic, in case you choose to give mine a thought. I actually just found out that they are #2 in the nation for best pulmonary, and Dr. Scanlin tries his best to keep it that way.
If my location is out of question for you, then I would do CHOP.
 
R

RistaGirly

New member
I'm 22, I started out at CHOP, Dr. Thomas Scanlin was there. He has a great "program" i guess you can call it. CHOP was always really good. I however moved on, and followed Dr Scanlin when he changed hospitals. He is now at Bristol Myers Squibb Children's which is part of Robert Wood Johnson University Hospital in New Brunswick, NJ. The staff is fantastic, in case you choose to give mine a thought. I actually just found out that they are #2 in the nation for best pulmonary, and Dr. Scanlin tries his best to keep it that way.
If my location is out of question for you, then I would do CHOP.
 
R

RistaGirly

New member
I'm 22, I started out at CHOP, Dr. Thomas Scanlin was there. He has a great "program" i guess you can call it. CHOP was always really good. I however moved on, and followed Dr Scanlin when he changed hospitals. He is now at Bristol Myers Squibb Children's which is part of Robert Wood Johnson University Hospital in New Brunswick, NJ. The staff is fantastic, in case you choose to give mine a thought. I actually just found out that they are #2 in the nation for best pulmonary, and Dr. Scanlin tries his best to keep it that way.
<br />If my location is out of question for you, then I would do CHOP.
 
L

LondonFog214

New member
My kids were diagnosed this year they are 11 and 14. Long story. Look up my other posts if your interested. It has been a battle. We are at CHOP now and happy so far. We are with Dr. Rubenstein(pulmonology) and Dr. Mascarehnas(GI). Their nursing staff is great and my son was in for his 1st tune-up last month and the hospital experience was very educational. They have their act down, Rubenstein has a personality like House but he is smart and a scientist. My kids like him. Mascarehnas is very nurturing and a compliment to Rubenstein.I called Kerri Crest one of the nurses before they were patients. I would go for a consult at least.
 
L

LondonFog214

New member
My kids were diagnosed this year they are 11 and 14. Long story. Look up my other posts if your interested. It has been a battle. We are at CHOP now and happy so far. We are with Dr. Rubenstein(pulmonology) and Dr. Mascarehnas(GI). Their nursing staff is great and my son was in for his 1st tune-up last month and the hospital experience was very educational. They have their act down, Rubenstein has a personality like House but he is smart and a scientist. My kids like him. Mascarehnas is very nurturing and a compliment to Rubenstein.I called Kerri Crest one of the nurses before they were patients. I would go for a consult at least.
 
L

LondonFog214

New member
My kids were diagnosed this year they are 11 and 14. Long story. Look up my other posts if your interested. It has been a battle. We are at CHOP now and happy so far. We are with Dr. Rubenstein(pulmonology) and Dr. Mascarehnas(GI). Their nursing staff is great and my son was in for his 1st tune-up last month and the hospital experience was very educational. They have their act down, Rubenstein has a personality like House but he is smart and a scientist. My kids like him. Mascarehnas is very nurturing and a compliment to Rubenstein.I called Kerri Crest one of the nurses before they were patients. I would go for a consult at least.
 
T

tarheel

Guest
LISTEN- THIS IS IMPORTANT!

I go to DuPont, and have been (as far as peids centers go) to University of North Carolina's center, Johns Hopkins, a consult at Chop, and now DuPont and transferring back to UNC for my adult care.

I am 18 and looking a transplant in the face- because Johns Hopkins, DuPont, and CHOP are all way below par CF centers. Their CF registry lung function data is dismal. DONT listen to their excuses. Look at the numbers and what they tell you. All three (JH, Chop, DuPont) are very unfamiliar with different mutations. Frankly, the number of patients that AI refers for transplant is frightening. So is CHOPs. Pulmonary center is not the same as a CF center. I hate to sound this urgent- but the best center in the country is Minnesota. My mom has literally lived her life for 18 years regretting that we did not go there when I was diagnosed. UNC is fantastic- great! but if you're going to move or have to travel to get somewhere go to Minnesota- the absolute best in the country. I understand that this is completely foreign and scary, I'm just trying to prevent a mistake from happening again.
 
T

tarheel

Guest
LISTEN- THIS IS IMPORTANT!

I go to DuPont, and have been (as far as peids centers go) to University of North Carolina's center, Johns Hopkins, a consult at Chop, and now DuPont and transferring back to UNC for my adult care.

I am 18 and looking a transplant in the face- because Johns Hopkins, DuPont, and CHOP are all way below par CF centers. Their CF registry lung function data is dismal. DONT listen to their excuses. Look at the numbers and what they tell you. All three (JH, Chop, DuPont) are very unfamiliar with different mutations. Frankly, the number of patients that AI refers for transplant is frightening. So is CHOPs. Pulmonary center is not the same as a CF center. I hate to sound this urgent- but the best center in the country is Minnesota. My mom has literally lived her life for 18 years regretting that we did not go there when I was diagnosed. UNC is fantastic- great! but if you're going to move or have to travel to get somewhere go to Minnesota- the absolute best in the country. I understand that this is completely foreign and scary, I'm just trying to prevent a mistake from happening again.
 
T

tarheel

Guest
LISTEN- THIS IS IMPORTANT!
<br />
<br />I go to DuPont, and have been (as far as peids centers go) to University of North Carolina's center, Johns Hopkins, a consult at Chop, and now DuPont and transferring back to UNC for my adult care.
<br />
<br />I am 18 and looking a transplant in the face- because Johns Hopkins, DuPont, and CHOP are all way below par CF centers. Their CF registry lung function data is dismal. DONT listen to their excuses. Look at the numbers and what they tell you. All three (JH, Chop, DuPont) are very unfamiliar with different mutations. Frankly, the number of patients that AI refers for transplant is frightening. So is CHOPs. Pulmonary center is not the same as a CF center. I hate to sound this urgent- but the best center in the country is Minnesota. My mom has literally lived her life for 18 years regretting that we did not go there when I was diagnosed. UNC is fantastic- great! but if you're going to move or have to travel to get somewhere go to Minnesota- the absolute best in the country. I understand that this is completely foreign and scary, I'm just trying to prevent a mistake from happening again.
 
H

hmw

New member
This is the data reported to the CFF Registry for the pediatric care centers you are considering and/or being discussed in this thread for the year 2008 (most recent year available):

<b>CHOP</b> ...this is a transplant center so will get sicker patients.
fev1: 100%
bmi: 54.8%
guidelines of care: 60.3%

<b>Hopkins</b> ...also a transplant center.
fev1: 88.3%
bmi: 49%
guidelines of care: 73.7%

<b>DuPont</b>
fev1: 87.4%
bmi: 48.4%
guidelines of care: 42.9%

<b>UNC</b> ...also a transplant center
fev1: 89.6
bmi: 43.9%
guidelines of care: 86.2%

<b>National Average</b>
fev1: 90.2%
bmi: 48.4%
guidelines of care: 68.6%

This data doesn't tell the whole story of how these centers add up. However, it's valuable to know; a reflection of the average health of the children that receive their care there.

Our center director has told me that Hopkins has an interest in 'rare mutation' cases. Our family's circumstances w/my daughter having an unknown mutation and my son's status being unknown for quite a long time warranted a discussion about this. We've also seen here that CHOP does not seem quite as open-minded to 'atypical' cases or rare mutations; but they have an extremely good program overall... your experience will vary based on your child's individual circumstances perhaps.

You can access all of these statistics yourself on cff.org website using the link for care center data (you'll have to register as a user for the site if you haven't yet.)
 
H

hmw

New member
This is the data reported to the CFF Registry for the pediatric care centers you are considering and/or being discussed in this thread for the year 2008 (most recent year available):

<b>CHOP</b> ...this is a transplant center so will get sicker patients.
fev1: 100%
bmi: 54.8%
guidelines of care: 60.3%

<b>Hopkins</b> ...also a transplant center.
fev1: 88.3%
bmi: 49%
guidelines of care: 73.7%

<b>DuPont</b>
fev1: 87.4%
bmi: 48.4%
guidelines of care: 42.9%

<b>UNC</b> ...also a transplant center
fev1: 89.6
bmi: 43.9%
guidelines of care: 86.2%

<b>National Average</b>
fev1: 90.2%
bmi: 48.4%
guidelines of care: 68.6%

This data doesn't tell the whole story of how these centers add up. However, it's valuable to know; a reflection of the average health of the children that receive their care there.

Our center director has told me that Hopkins has an interest in 'rare mutation' cases. Our family's circumstances w/my daughter having an unknown mutation and my son's status being unknown for quite a long time warranted a discussion about this. We've also seen here that CHOP does not seem quite as open-minded to 'atypical' cases or rare mutations; but they have an extremely good program overall... your experience will vary based on your child's individual circumstances perhaps.

You can access all of these statistics yourself on cff.org website using the link for care center data (you'll have to register as a user for the site if you haven't yet.)
 
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