mariahsmommy
New member
I was blunt with the things I said in this, but I wanted everyone's opinion. Also, if I left anything out let me know because I am not afraid to send it again.
Here is her email: theresa.toigo@fda.hhs.gov
Please send her an email. I am extremely hopeful, but I really think if we all do this, it might help in the enzymes getting approved real soon!
Here is the letter:
To whom it may concern:
My daughter, Mariah, is 17 months old and has cystic fibrosis. She was born with a blockage in her intestines and required surgery to correct it. She had an ileostomy bag for 5 weeks to give her bowels a rest. During this time, she tried to eat by mouth but because of the pain from her pancreatic insufficiency, she would not eat. Because of this, her doctors put a gtube in her stomach. This allows us to feed her when she cannot eat by mouth.
She has been taking enzymes before her meals since she was 2 weeks old, when she was diagnosed with cystic fibrosis. By taking enzymes I mean that at 2 weeks old, we opened the pills that contained beads and mixed them in applesauce. We then had to spoon feed these to her. She choked and gagged constantly. After fighting with her to get these pills down, she was wore out and didn't want to eat. And there was always some beads left in her throat that would cause her to vomit most of what she had just eaten. And I don't know if you know or not, but weight in a person with cystic fibrosis strongly correlates to their lung function. This being said, you can't get someone at a good weight when they are constantly vomiting. We did this for a very long year.
Finally, after explaining all of this to her doctors, we were informed of an enzyme called Pancrecarb. The beads in this pill are small enough that when mixed with applesauce, they can go right through her gtube in her stomach! No need to get her to eat them by mouth. This was such an amazing discovery, that it still makes me cry. For your child to refuse eating is a very frustrating and saddening thing. I am proud to say that my daughter now enjoys eating. However, she still doesn't meet all of her needs by mouth, so we have to supplement after her meals and while she is sleeping. I know that if she has to start taking pills by mouth again, that she will start vomiting and refuse to eat. Also, it is hard to supplement while she is sleeping if we have to wake her up to shove pills down her throat. When with the Pancrecarb, we don't have to wake her, the pills can go into her gtube.
Viokase and Ultrase are other enzymes that haven't been approved either. Alot of people also use Viokase at night when they do overnight feeds. Ultrase is one that has been used by some for 10+ years. Nothing else has worked for them, NOTHING. When enzymes don't work, people have horrible belly aches, loose stools, gas, pain, malabsorption of several important enzymes, etc.
I hope you understand my determination in this matter. My daughter is one of the many children with cystic fibrosis who can only take ONE kind of enzyme. Sometimes, no enzymes work for them. Please help us get these enzymes approved. Cystic fibrosis is hard enough without having to fight for medication. People depend on this medication to LIVE. Without enzymes, these people don't gain weight. When their BMI goes down, so does their lung function. Whether you realize it or not, this could lead to death for some. I hate to be so blunt, but I care so deeply for my child and for all people with cystic fibrosis. It is a horrible disease and we need all the ammunition we can get to fight this battle.
Thank you so much for your time and consideration,
Felicia Myers
(Also, if I can do anything to help, please feel free to contact me at 479-301-3051.)
Here is her email: theresa.toigo@fda.hhs.gov
Please send her an email. I am extremely hopeful, but I really think if we all do this, it might help in the enzymes getting approved real soon!
Here is the letter:
To whom it may concern:
My daughter, Mariah, is 17 months old and has cystic fibrosis. She was born with a blockage in her intestines and required surgery to correct it. She had an ileostomy bag for 5 weeks to give her bowels a rest. During this time, she tried to eat by mouth but because of the pain from her pancreatic insufficiency, she would not eat. Because of this, her doctors put a gtube in her stomach. This allows us to feed her when she cannot eat by mouth.
She has been taking enzymes before her meals since she was 2 weeks old, when she was diagnosed with cystic fibrosis. By taking enzymes I mean that at 2 weeks old, we opened the pills that contained beads and mixed them in applesauce. We then had to spoon feed these to her. She choked and gagged constantly. After fighting with her to get these pills down, she was wore out and didn't want to eat. And there was always some beads left in her throat that would cause her to vomit most of what she had just eaten. And I don't know if you know or not, but weight in a person with cystic fibrosis strongly correlates to their lung function. This being said, you can't get someone at a good weight when they are constantly vomiting. We did this for a very long year.
Finally, after explaining all of this to her doctors, we were informed of an enzyme called Pancrecarb. The beads in this pill are small enough that when mixed with applesauce, they can go right through her gtube in her stomach! No need to get her to eat them by mouth. This was such an amazing discovery, that it still makes me cry. For your child to refuse eating is a very frustrating and saddening thing. I am proud to say that my daughter now enjoys eating. However, she still doesn't meet all of her needs by mouth, so we have to supplement after her meals and while she is sleeping. I know that if she has to start taking pills by mouth again, that she will start vomiting and refuse to eat. Also, it is hard to supplement while she is sleeping if we have to wake her up to shove pills down her throat. When with the Pancrecarb, we don't have to wake her, the pills can go into her gtube.
Viokase and Ultrase are other enzymes that haven't been approved either. Alot of people also use Viokase at night when they do overnight feeds. Ultrase is one that has been used by some for 10+ years. Nothing else has worked for them, NOTHING. When enzymes don't work, people have horrible belly aches, loose stools, gas, pain, malabsorption of several important enzymes, etc.
I hope you understand my determination in this matter. My daughter is one of the many children with cystic fibrosis who can only take ONE kind of enzyme. Sometimes, no enzymes work for them. Please help us get these enzymes approved. Cystic fibrosis is hard enough without having to fight for medication. People depend on this medication to LIVE. Without enzymes, these people don't gain weight. When their BMI goes down, so does their lung function. Whether you realize it or not, this could lead to death for some. I hate to be so blunt, but I care so deeply for my child and for all people with cystic fibrosis. It is a horrible disease and we need all the ammunition we can get to fight this battle.
Thank you so much for your time and consideration,
Felicia Myers
(Also, if I can do anything to help, please feel free to contact me at 479-301-3051.)