enzymes and diagnosis

[martysmom]

HI EVERYONE!
I just want to let everyone know that through the quest screening they found my son's mutations. It took forever to find out but at least now our "not knowing what is wrong with our baby" has come to an end. I am just really glad that I kept pushing for everything.
I have another question. My guy was just switched to Creon and he is on a dose that is way higher than the recommended maximum dose. I know that if he goes lower the enzymes will not work. He was doing really well on Ultrase but kept needed to increase. Anyone else have their child on such a high dose and has it been working? I think he is growing better and his stools have absolutely become more normal.
I'm just feeling a little bit out of sorts with all of this. I was showed the door so many times everytime I asked for more CF testing and now it has come to an end. There is no more fighting to get this done and we can finally breathe and take it from here. His mutations were not on the 32 mutations panel and it just amazes me that his mutations are so rare!!! Thanks everyone for all the wonderful advice you always give and thanks for letting me vent! I hope everyone and your families are doing well!!

 

[martysmom]

HI EVERYONE!
I just want to let everyone know that through the quest screening they found my son's mutations. It took forever to find out but at least now our "not knowing what is wrong with our baby" has come to an end. I am just really glad that I kept pushing for everything.
I have another question. My guy was just switched to Creon and he is on a dose that is way higher than the recommended maximum dose. I know that if he goes lower the enzymes will not work. He was doing really well on Ultrase but kept needed to increase. Anyone else have their child on such a high dose and has it been working? I think he is growing better and his stools have absolutely become more normal.
I'm just feeling a little bit out of sorts with all of this. I was showed the door so many times everytime I asked for more CF testing and now it has come to an end. There is no more fighting to get this done and we can finally breathe and take it from here. His mutations were not on the 32 mutations panel and it just amazes me that his mutations are so rare!!! Thanks everyone for all the wonderful advice you always give and thanks for letting me vent! I hope everyone and your families are doing well!!

 

[martysmom]

HI EVERYONE!
<br />I just want to let everyone know that through the quest screening they found my son's mutations. It took forever to find out but at least now our "not knowing what is wrong with our baby" has come to an end. I am just really glad that I kept pushing for everything.
<br />I have another question. My guy was just switched to Creon and he is on a dose that is way higher than the recommended maximum dose. I know that if he goes lower the enzymes will not work. He was doing really well on Ultrase but kept needed to increase. Anyone else have their child on such a high dose and has it been working? I think he is growing better and his stools have absolutely become more normal.
<br />I'm just feeling a little bit out of sorts with all of this. I was showed the door so many times everytime I asked for more CF testing and now it has come to an end. There is no more fighting to get this done and we can finally breathe and take it from here. His mutations were not on the 32 mutations panel and it just amazes me that his mutations are so rare!!! Thanks everyone for all the wonderful advice you always give and thanks for letting me vent! I hope everyone and your families are doing well!!

 

[just1more]

I would not worry about the enzyme dosage. There is a lot of leeway in the #'s, and if you trust your clinic you should be fine.

The main risk from too much long-term is the risk of a bowel obstruction. Probably wouldn't hurt to research the signs/symptoms if you are worried.

But more importantly, raise your concerns to the dietitian at your clinic, or directly with the CF Dr.

 

[just1more]

I would not worry about the enzyme dosage. There is a lot of leeway in the #'s, and if you trust your clinic you should be fine.

The main risk from too much long-term is the risk of a bowel obstruction. Probably wouldn't hurt to research the signs/symptoms if you are worried.

But more importantly, raise your concerns to the dietitian at your clinic, or directly with the CF Dr.

 

[just1more]

I would not worry about the enzyme dosage. There is a lot of leeway in the #'s, and if you trust your clinic you should be fine.
<br />
<br />The main risk from too much long-term is the risk of a bowel obstruction. Probably wouldn't hurt to research the signs/symptoms if you are worried.
<br />
<br />But more importantly, raise your concerns to the dietitian at your clinic, or directly with the CF Dr.

 

[Mommafirst]

I don't know anything about large doses of enzymes, but I am so glad that all your pushing paid off to get you answers. I'm sorry he has CF but so glad you have a real course of action now.

 

[Mommafirst]

I don't know anything about large doses of enzymes, but I am so glad that all your pushing paid off to get you answers. I'm sorry he has CF but so glad you have a real course of action now.

 

[Mommafirst]

I don't know anything about large doses of enzymes, but I am so glad that all your pushing paid off to get you answers. I'm sorry he has CF but so glad you have a real course of action now.

 

[Ratatosk]

It's my understanding that one has to take an EXCESSIVE amount of enzymes for their to be issues. If the stools are looking normal... Has your clinic suggested using an acid reducer such as zantac or prilosec to help the enzymes work better? Also, I know of a local family whose child had severe malapsorption issues and they ended up giving him oral mucomyst on a regular basis.

I'm sure you've got a whole range of emotions going on right now. The dealing with the diagnosis, the doctors/clinics who wouldn't believe you... But now you can focus on keeping your child healthy, gaining some weight...

 

[Ratatosk]

It's my understanding that one has to take an EXCESSIVE amount of enzymes for their to be issues. If the stools are looking normal... Has your clinic suggested using an acid reducer such as zantac or prilosec to help the enzymes work better? Also, I know of a local family whose child had severe malapsorption issues and they ended up giving him oral mucomyst on a regular basis.

I'm sure you've got a whole range of emotions going on right now. The dealing with the diagnosis, the doctors/clinics who wouldn't believe you... But now you can focus on keeping your child healthy, gaining some weight...

 

[Ratatosk]

It's my understanding that one has to take an EXCESSIVE amount of enzymes for their to be issues. If the stools are looking normal... Has your clinic suggested using an acid reducer such as zantac or prilosec to help the enzymes work better? Also, I know of a local family whose child had severe malapsorption issues and they ended up giving him oral mucomyst on a regular basis.
<br />
<br />I'm sure you've got a whole range of emotions going on right now. The dealing with the diagnosis, the doctors/clinics who wouldn't believe you... But now you can focus on keeping your child healthy, gaining some weight...

 

[mom2cameron]

My son since birth has tried all different kinds of enzymes and have went all the way to the top in doses with each. He is right over the max dose for his weight but its the only thing that works for him. We were on Ultrase for little while and it worked better than any of them but since we can not get them anymore we have been put back on Creon. (Creon was the first enzyme he was on at 1 month old and they did not work then) They are working okay now at the higher dose, but we will have to see (just got off antibiotics so things could change)We are also on an anti acid to help the enzymes work better.

 

[mom2cameron]

My son since birth has tried all different kinds of enzymes and have went all the way to the top in doses with each. He is right over the max dose for his weight but its the only thing that works for him. We were on Ultrase for little while and it worked better than any of them but since we can not get them anymore we have been put back on Creon. (Creon was the first enzyme he was on at 1 month old and they did not work then) They are working okay now at the higher dose, but we will have to see (just got off antibiotics so things could change)We are also on an anti acid to help the enzymes work better.

 

[mom2cameron]

My son since birth has tried all different kinds of enzymes and have went all the way to the top in doses with each. He is right over the max dose for his weight but its the only thing that works for him. We were on Ultrase for little while and it worked better than any of them but since we can not get them anymore we have been put back on Creon. (Creon was the first enzyme he was on at 1 month old and they did not work then) They are working okay now at the higher dose, but we will have to see (just got off antibiotics so things could change)We are also on an anti acid to help the enzymes work better.

 

[martysmom]

Thanks everyone! I feel better about the enzymes. I really hated switching. I have been a little down in the dumps for the past few days but things are better now. It is nice to have answers. We go next week to the doc so I will talk to them about everything. I always have 587654854 questions when we go! hhahaha! I hope you are all doing well and I really appreciate all the great advice you always have <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[martysmom]

Thanks everyone! I feel better about the enzymes. I really hated switching. I have been a little down in the dumps for the past few days but things are better now. It is nice to have answers. We go next week to the doc so I will talk to them about everything. I always have 587654854 questions when we go! hhahaha! I hope you are all doing well and I really appreciate all the great advice you always have <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[martysmom]

Thanks everyone! I feel better about the enzymes. I really hated switching. I have been a little down in the dumps for the past few days but things are better now. It is nice to have answers. We go next week to the doc so I will talk to them about everything. I always have 587654854 questions when we go! hhahaha! I hope you are all doing well and I really appreciate all the great advice you always have <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[petnurse]

Hang in there as far as the enzymes (everyone). Ultrase should be back on the market soon. My son takes the lowest dose and those will not be returning, but from what I have been told, the rest should be back soon!

 

[petnurse]

Hang in there as far as the enzymes (everyone). Ultrase should be back on the market soon. My son takes the lowest dose and those will not be returning, but from what I have been told, the rest should be back soon!