Looking for a CF Center in Northern NJ or NYC

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momofmia

Guest
I am searching for a CF center for my 15 year old daughter who has just been diagnosed. She has M470v an 7T/7T. Her physicians said her variants an polymorphisms have nothing to do with her illness. They just Rx'd HyperSal and Pulmozyne due to her Bronchiectasis, and constant productive cough and fevers. She also has chronic sinus infections,ear infections and thank goodness no GI symptoms. I want to make an appointment ASAP. We are also going for her Nasal Potential test as soon as school gets out for the summer. Could someone please recommend a reliable center for that? Her 3 sweat tests were negative at 3, 4 and 32.
I appreciate any advice you can offer.


Lisa
mom of an amazing 15 year old daughter. w/ bronchiectasis, chronic sinus infections, ear infections. M470v and 7T/7T.
 
M

momofmia

Guest
I am searching for a CF center for my 15 year old daughter who has just been diagnosed. She has M470v an 7T/7T. Her physicians said her variants an polymorphisms have nothing to do with her illness. They just Rx'd HyperSal and Pulmozyne due to her Bronchiectasis, and constant productive cough and fevers. She also has chronic sinus infections,ear infections and thank goodness no GI symptoms. I want to make an appointment ASAP. We are also going for her Nasal Potential test as soon as school gets out for the summer. Could someone please recommend a reliable center for that? Her 3 sweat tests were negative at 3, 4 and 32.
I appreciate any advice you can offer.


Lisa
mom of an amazing 15 year old daughter. w/ bronchiectasis, chronic sinus infections, ear infections. M470v and 7T/7T.
 
K

kharm

New member
Ibegan going to the Cedar Knolls (Morristown) office of Pulmonary Allergy & Associates (<a href="http://www.paamds.com/">www.paamds.com</a>)10 years ago since it was closest to where I worked at the time. Though I live in Allentown, PA and no longer work in NJ, I continue to go there even though it takes me 1 hour and 20 minutesbecauseI feel I get the best care there (before going to PAA, I was seen in Philadelphia). My main doctor is Dr.Scoopo who is a greatpulmonologist. I highly recommend him. He takes the time to answer all ofmy questions and really listens tome before making decisions aboutmy care. He genuinely cares about his patients and is very down to earth with great "bedside manner" (rare for docs in my experience - also a plus if you're looking for a doctor foryour teenager). Since I have been hospitalized at Morritown Memorial Hospital many times, I have also seen Dr. Dimitry, Dr. Oppenheimer, Dr. Cancel, and Dr. Oeifrom PAA and they areall very good docs. The office staff and nurses are helpful and friendly and I am always able to get an appointment when I need one. PAA has a pediatric division (Dr. Scoopo is one of the pediatric docs)in addition to treating adults (making for an easy transition with your teenager)andthey haveoffices in Cedar Knolls (I've only been seen there), Summit, and Livingston. I hope this helps!
P.S. I was diagnosed at 14, so I know how difficult it must be for you and your daughter.
 
K

kharm

New member
Ibegan going to the Cedar Knolls (Morristown) office of Pulmonary Allergy & Associates (<a href="http://www.paamds.com/">www.paamds.com</a>)10 years ago since it was closest to where I worked at the time. Though I live in Allentown, PA and no longer work in NJ, I continue to go there even though it takes me 1 hour and 20 minutesbecauseI feel I get the best care there (before going to PAA, I was seen in Philadelphia). My main doctor is Dr.Scoopo who is a greatpulmonologist. I highly recommend him. He takes the time to answer all ofmy questions and really listens tome before making decisions aboutmy care. He genuinely cares about his patients and is very down to earth with great "bedside manner" (rare for docs in my experience - also a plus if you're looking for a doctor foryour teenager). Since I have been hospitalized at Morritown Memorial Hospital many times, I have also seen Dr. Dimitry, Dr. Oppenheimer, Dr. Cancel, and Dr. Oeifrom PAA and they areall very good docs. The office staff and nurses are helpful and friendly and I am always able to get an appointment when I need one. PAA has a pediatric division (Dr. Scoopo is one of the pediatric docs)in addition to treating adults (making for an easy transition with your teenager)andthey haveoffices in Cedar Knolls (I've only been seen there), Summit, and Livingston. I hope this helps!
P.S. I was diagnosed at 14, so I know how difficult it must be for you and your daughter.
 
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stephen

Guest
I use to go to the Adult CF Center at Columbia University. It's located in upper Manhattan very near the George Washington Bridge. Columbia University Children's Hospital of New York Columbia University (PEDIATRIC) New York City, NY 10032 Appointments: (212) 305-5122 Director(s): Meyer Kattan, M.D. Columbia University, Adult Cystic Fibrosis Program (ADULT) New York City, NY 10032 Appointments: (212) 305-0631 Director(s): Emily DiMango, M.D., Angela DiMango, M.D. I was extremely satisfied there and highly recommend them. They are participants in many CF studies. Through one of their programs, I was able to get Cayston on the <em>expanded access program</em> for <em>aztreonam lysine,</em>three years before it got FDA approval. The only reason I switched CF centers was because of the travel time. I live on long Island and the LIJ CF Center which I now use is only a few miles from me. They also serve as my regular pulmonologists and I have nothing but praise for them too. As others have stated elsewhere, a CF diagnosis for an "older" person can be a positive thing. You now know what was causing your health problems and have access to drugs and a treatment protocol that can really result in a very positive difference. Wishing you all the best. Stephen 70 years old with CF in
 
S

stephen

Guest
I use to go to the Adult CF Center at Columbia University. It's located in upper Manhattan very near the George Washington Bridge. Columbia University Children's Hospital of New York Columbia University (PEDIATRIC) New York City, NY 10032 Appointments: (212) 305-5122 Director(s): Meyer Kattan, M.D. Columbia University, Adult Cystic Fibrosis Program (ADULT) New York City, NY 10032 Appointments: (212) 305-0631 Director(s): Emily DiMango, M.D., Angela DiMango, M.D. I was extremely satisfied there and highly recommend them. They are participants in many CF studies. Through one of their programs, I was able to get Cayston on the <em>expanded access program</em> for <em>aztreonam lysine,</em>three years before it got FDA approval. The only reason I switched CF centers was because of the travel time. I live on long Island and the LIJ CF Center which I now use is only a few miles from me. They also serve as my regular pulmonologists and I have nothing but praise for them too. As others have stated elsewhere, a CF diagnosis for an "older" person can be a positive thing. You now know what was causing your health problems and have access to drugs and a treatment protocol that can really result in a very positive difference. Wishing you all the best. Stephen 70 years old with CF in
 
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wholax

New member
My daughter sees Dr. Scanlin, Bristol Myers Squibb Children's Hospital,New Brunswick NJ. We followed him there from CHOP in Philly. His clinic is one of the top ranked in the country and has been for years. We like him because he is aggressive in his treatment approach. Here's a link to contact information. http://www.healthgrades.com/physician/dr-thomas-scanlin-ymj38/
Good luck,
Colin
 
W

wholax

New member
My daughter sees Dr. Scanlin, Bristol Myers Squibb Children's Hospital,New Brunswick NJ. We followed him there from CHOP in Philly. His clinic is one of the top ranked in the country and has been for years. We like him because he is aggressive in his treatment approach. Here's a link to contact information. http://www.healthgrades.com/physician/dr-thomas-scanlin-ymj38/
Good luck,
Colin
 
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momofmia

Guest
Thank you all so much for your advice and kind words. I truly appreciate all of your help. I will research all of the above and make my decision.
Thank you,
Lisa
 
M

momofmia

Guest
Thank you all so much for your advice and kind words. I truly appreciate all of your help. I will research all of the above and make my decision.
Thank you,
Lisa
 
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patrish22

Guest
Not sure how 'north' you want to be. Morristown Medical Center/Their CF clinics have GREAT teams for peds and adult. My kids have been going there for over 10 years and have received outstanding care and support form everyone. We started there before they were accrediated by theCF Foundation. Our other options were much further away and caring for 3 w/ CF we agreed as a family to try there first. The Dr there that first diagnosed their CF was the 1st one to even think about it after a long line of doctors pointing in other directions. My kids love their doctors, nurse practioner, social worker, (I could go on). No place will always be perfect, but we are so glad to have something thats a closer drive, (takes an hour, andI am truly grateful for that!). Good luck in your search, you have access to quite a few great facilities.
 
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patrish22

Guest
Not sure how 'north' you want to be. Morristown Medical Center/Their CF clinics have GREAT teams for peds and adult. My kids have been going there for over 10 years and have received outstanding care and support form everyone. We started there before they were accrediated by theCF Foundation. Our other options were much further away and caring for 3 w/ CF we agreed as a family to try there first. The Dr there that first diagnosed their CF was the 1st one to even think about it after a long line of doctors pointing in other directions. My kids love their doctors, nurse practioner, social worker, (I could go on). No place will always be perfect, but we are so glad to have something thats a closer drive, (takes an hour, andI am truly grateful for that!). Good luck in your search, you have access to quite a few great facilities.
 
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healthypeanut

New member
We take our daughter to Dr. Berdella in Manhattan. She isboth caring and down to earth which I appreciate very much. The staff there is also very helpful and kind. <a href="http://livewellnewyork.com/maria-n-berdella-md">http://livewellnewyork.com/maria-n-berdella-md</a>

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<td><strong><strong>Saint Vincent's Catholic Medical Centers Manhattan</strong> </strong></td>
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<td style="padding-left: 15px;"><strong>Beth Israel Medical Center</strong><strong> (PEDIATRIC)</strong>New York, NY 10003Appointments: (212) 420-4100Director(s): Maria N. Berdella, M.D.</td>
</tr>
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<td style="padding-left: 15px;"><strong>Beth Israel Medical Center</strong><strong> (ADULT)</strong>New York, NY 10003Appointments: (212) 420-4100Director(s): Patricia A. Walker, M.D.</td>
</tr>
</tbody>
</table>
 
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Bbedrock

New member
I second patrish22. Goryeb Children's/Morristown Memorial is excellent! My son has been going there since diagnosis 13 years ago. Great doctors - would highly recommend Drs. Cooper and Wazeka. Great nursing staff and social worker. Good luck!
 
J

Julie7

New member
Why is it that dr say her variants have nothing to do with CF, does she have other CF mutations as well?My son has homozygous m470v and poly 5T variant which dr are focusing on the 5t right now while we search for other mutations. I'm curious why they say those mutations are meaningless. When you think of where CF was Even 10 yrs ago, there were mutations that were not thought to be disease causing but are considered so today. So, I'm a bit skeptical on a statement like that bit I'm hoping someone comments.
 
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mamaScarlett

Active member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>healthypeanut</b></i> We take our daughter to Dr. Berdella in Manhattan. She isboth caring and down to earth which I appreciate very much. The staff there is also very helpful and kind. <a href="http://livewellnewyork.com/maria-n-berdella-md">http://livewellnewyork.com/maria-n-berdella-md</a>

<table>
<tbody>
<tr>
<td><b><b>Saint Vincent's Catholic Medical Centers Manhattan</b> </b></td>
</tr>
<tr>
<td style="padding-left: 15px;"><b>Beth Israel Medical Center</b><b> (PEDIATRIC)</b> New York, NY 10003 Appointments: (212) 420-4100 Director(s): Maria N. Berdella, M.D.</td>
</tr>
<tr>
<td style="padding-left: 15px;"><b>Beth Israel Medical Center</b><b> (ADULT)</b> New York, NY 10003 Appointments: (212) 420-4100 Director(s): Patricia A. Walker, M.D.</td>
</tr>
</tbody>
</table>
</end quote>
I also go to B.I. CF center. I've been with them for 9 years. They've changed my life.
 
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momofmia

Guest
Thank you all so much for your recommendations. I will let you know what happens.

Lisa
Momofmia
 
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