Pancrecarb

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Rebjane

Super Moderator
My daughter takes Pancrecarb; yes we still have some, but are no longer able to get it from any pharmacy; still waiting for FDA approval. I have spoken to our Senator's office and her health liason has gotten through to the FDA liason. I got an e-mail stating a GI doc from the FDA would be willing to speak about my daughter with her CF doc for recomendations.

The health care liason said she would relay any other concerns to this FDA liason for me; I already emailed her back but IF ANYONE has anything to say let me know and I would be happy to try and give you a voice...You can send me an PM or post her but make it quick cause it's taken months for me to get a response....Thanks

Rebecca
 
R

Rebjane

Super Moderator
My daughter takes Pancrecarb; yes we still have some, but are no longer able to get it from any pharmacy; still waiting for FDA approval. I have spoken to our Senator's office and her health liason has gotten through to the FDA liason. I got an e-mail stating a GI doc from the FDA would be willing to speak about my daughter with her CF doc for recomendations.

The health care liason said she would relay any other concerns to this FDA liason for me; I already emailed her back but IF ANYONE has anything to say let me know and I would be happy to try and give you a voice...You can send me an PM or post her but make it quick cause it's taken months for me to get a response....Thanks

Rebecca
 
R

Rebjane

Super Moderator
My daughter takes Pancrecarb; yes we still have some, but are no longer able to get it from any pharmacy; still waiting for FDA approval. I have spoken to our Senator's office and her health liason has gotten through to the FDA liason. I got an e-mail stating a GI doc from the FDA would be willing to speak about my daughter with her CF doc for recomendations.
<br />
<br />The health care liason said she would relay any other concerns to this FDA liason for me; I already emailed her back but IF ANYONE has anything to say let me know and I would be happy to try and give you a voice...You can send me an PM or post her but make it quick cause it's taken months for me to get a response....Thanks
<br />
<br />Rebecca
 
M

Mommafirst

Guest
Alyssa uses pancreacarb for tube feeds and I will be crying my eyes out when we run out of our stash. With night tube feeds its the difference between a simple applesauce/enzyme mixture zapped through the tube at bed time vs. the zen pep that required MAYONAISE to be mixed and get it through the tube. The mayo is gross and if it sits in the tube stuck to the side can go rancid and get our kids ill. Blech!!!!

Luckily, we don't have the issue of the pancreacarb being the only enzyme to work in her gut -- but I do know there are kids where this is the case.
 
M

Mommafirst

Guest
Alyssa uses pancreacarb for tube feeds and I will be crying my eyes out when we run out of our stash. With night tube feeds its the difference between a simple applesauce/enzyme mixture zapped through the tube at bed time vs. the zen pep that required MAYONAISE to be mixed and get it through the tube. The mayo is gross and if it sits in the tube stuck to the side can go rancid and get our kids ill. Blech!!!!

Luckily, we don't have the issue of the pancreacarb being the only enzyme to work in her gut -- but I do know there are kids where this is the case.
 
M

Mommafirst

Guest
Alyssa uses pancreacarb for tube feeds and I will be crying my eyes out when we run out of our stash. With night tube feeds its the difference between a simple applesauce/enzyme mixture zapped through the tube at bed time vs. the zen pep that required MAYONAISE to be mixed and get it through the tube. The mayo is gross and if it sits in the tube stuck to the side can go rancid and get our kids ill. Blech!!!!
<br />
<br />Luckily, we don't have the issue of the pancreacarb being the only enzyme to work in her gut -- but I do know there are kids where this is the case.
 
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mariahsmommy

New member
I totally feel your frustration! I have tried to contact that lady from the FDA and even the sales guy from Pacreacarb. Neither one will call me back. I just hope that one of the other companies will come up with some kind of enzyme that can go through a tube.
 
M

mariahsmommy

New member
I totally feel your frustration! I have tried to contact that lady from the FDA and even the sales guy from Pacreacarb. Neither one will call me back. I just hope that one of the other companies will come up with some kind of enzyme that can go through a tube.
 
M

mariahsmommy

New member
I totally feel your frustration! I have tried to contact that lady from the FDA and even the sales guy from Pacreacarb. Neither one will call me back. I just hope that one of the other companies will come up with some kind of enzyme that can go through a tube.
 
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