Two questions re: vest & Ultrase enzymes

2

2girls

New member
I haven't been on here in a while, but was wondering about two things so thought I would just ask "the experts"!

First off - my son got his vest at 10 months - my pulm said as soon as he measured 17" he could get it and he measured 17.5" - it is fabulous and we love it! Just wondering if anyone else has gotten it at such a young age? The rep from Hill-Rom/Resp therapist said it was great that he was getting it so young, but I was just wondering because a friend of mine said her CF Clinic said not until age 3. We do vest treatment 2x a day for 30 min each time. Jack does very well with it for the most part.

Second question - any of you on Ultrase MT12? What is the deal with the FDA approval? We are lucky enough to be on the Carefirst for Life program, which is awesome and I would hate for that to go away. My pharmacy has enough pills for us for at least another month but wondering what happens after that. Does anyone know if there are any other company's out there with this same type of program? What I love about it is that they don't take your financial info into consideration (my husband and I both work so we usually don't qualify for anything).

Your input would be appreciated!
 
2

2girls

New member
I haven't been on here in a while, but was wondering about two things so thought I would just ask "the experts"!

First off - my son got his vest at 10 months - my pulm said as soon as he measured 17" he could get it and he measured 17.5" - it is fabulous and we love it! Just wondering if anyone else has gotten it at such a young age? The rep from Hill-Rom/Resp therapist said it was great that he was getting it so young, but I was just wondering because a friend of mine said her CF Clinic said not until age 3. We do vest treatment 2x a day for 30 min each time. Jack does very well with it for the most part.

Second question - any of you on Ultrase MT12? What is the deal with the FDA approval? We are lucky enough to be on the Carefirst for Life program, which is awesome and I would hate for that to go away. My pharmacy has enough pills for us for at least another month but wondering what happens after that. Does anyone know if there are any other company's out there with this same type of program? What I love about it is that they don't take your financial info into consideration (my husband and I both work so we usually don't qualify for anything).

Your input would be appreciated!
 
2

2girls

New member
I haven't been on here in a while, but was wondering about two things so thought I would just ask "the experts"!
<br />
<br />First off - my son got his vest at 10 months - my pulm said as soon as he measured 17" he could get it and he measured 17.5" - it is fabulous and we love it! Just wondering if anyone else has gotten it at such a young age? The rep from Hill-Rom/Resp therapist said it was great that he was getting it so young, but I was just wondering because a friend of mine said her CF Clinic said not until age 3. We do vest treatment 2x a day for 30 min each time. Jack does very well with it for the most part.
<br />
<br />Second question - any of you on Ultrase MT12? What is the deal with the FDA approval? We are lucky enough to be on the Carefirst for Life program, which is awesome and I would hate for that to go away. My pharmacy has enough pills for us for at least another month but wondering what happens after that. Does anyone know if there are any other company's out there with this same type of program? What I love about it is that they don't take your financial info into consideration (my husband and I both work so we usually don't qualify for anything).
<br />
<br />Your input would be appreciated!
 
P

petnurse

New member
We were told no vest until age 2. I would think if he is doing okay with it, that it great. My son is also on the Ultrase. We stockpiled them (also in the CareFirst program). I don't think there is another one exactly like that one. Axcan sent us a letter stating that the ones my son takes (plain Ultrase- made for low dose requirements)will not seek approval. The other ones will be unavailable until approval (after the pharmacies run out). Good luck.. You may have to switch to a differnet one :-(
 
P

petnurse

New member
We were told no vest until age 2. I would think if he is doing okay with it, that it great. My son is also on the Ultrase. We stockpiled them (also in the CareFirst program). I don't think there is another one exactly like that one. Axcan sent us a letter stating that the ones my son takes (plain Ultrase- made for low dose requirements)will not seek approval. The other ones will be unavailable until approval (after the pharmacies run out). Good luck.. You may have to switch to a differnet one :-(
 
P

petnurse

New member
We were told no vest until age 2. I would think if he is doing okay with it, that it great. My son is also on the Ultrase. We stockpiled them (also in the CareFirst program). I don't think there is another one exactly like that one. Axcan sent us a letter stating that the ones my son takes (plain Ultrase- made for low dose requirements)will not seek approval. The other ones will be unavailable until approval (after the pharmacies run out). Good luck.. You may have to switch to a differnet one :-(
 
2

2girls

New member
I would love to stockpile the pills, but I can only order them around the same time each month and now that we are starting table food, we use more enzymes so we are pretty much going through them all each month. We just started with Ultrase MT12 in February and before that we were on Pancrease (which I still have a bottle of). I, along with everyone else, hates to change something that is working so well. Our pulm is letting me stay on them until we can no longer find them and then he will give me samples to try new ones - yuck!

Your son is adorable - our kiddos are very close in age. Are your older boys good with your son? My daughters are like little mommy's and are so good with Jack. Where do you live? We are close to St. Louis, MO.
 
2

2girls

New member
I would love to stockpile the pills, but I can only order them around the same time each month and now that we are starting table food, we use more enzymes so we are pretty much going through them all each month. We just started with Ultrase MT12 in February and before that we were on Pancrease (which I still have a bottle of). I, along with everyone else, hates to change something that is working so well. Our pulm is letting me stay on them until we can no longer find them and then he will give me samples to try new ones - yuck!

Your son is adorable - our kiddos are very close in age. Are your older boys good with your son? My daughters are like little mommy's and are so good with Jack. Where do you live? We are close to St. Louis, MO.
 
2

2girls

New member
I would love to stockpile the pills, but I can only order them around the same time each month and now that we are starting table food, we use more enzymes so we are pretty much going through them all each month. We just started with Ultrase MT12 in February and before that we were on Pancrease (which I still have a bottle of). I, along with everyone else, hates to change something that is working so well. Our pulm is letting me stay on them until we can no longer find them and then he will give me samples to try new ones - yuck!
<br />
<br />Your son is adorable - our kiddos are very close in age. Are your older boys good with your son? My daughters are like little mommy's and are so good with Jack. Where do you live? We are close to St. Louis, MO.
 
H

hmw

New member
Deidre~ unless we had a script written for a lot more than we used, we would never be able to stockpile our enzymes either as we can't fill them early and they are far too expensive to afford to do so on our own. It took us forever just to build up an extra few weeks supply; I am so grateful that Emily is on Creon and we never had to worry about what is happening now with those taking Pancrecarb and Ultrase and Viokase.

It would have been nice if clinics had the foresight to deal with what is going on now and wrote scripts the last several months the enzymes were available for doses greater than what the kids actually needed (and then provided their own written instructions for how to use them) so parents really COULD stock up... given how strict many insurance companies are now with filling scripts on time, maybe that is what some drs did.
 
H

hmw

New member
Deidre~ unless we had a script written for a lot more than we used, we would never be able to stockpile our enzymes either as we can't fill them early and they are far too expensive to afford to do so on our own. It took us forever just to build up an extra few weeks supply; I am so grateful that Emily is on Creon and we never had to worry about what is happening now with those taking Pancrecarb and Ultrase and Viokase.

It would have been nice if clinics had the foresight to deal with what is going on now and wrote scripts the last several months the enzymes were available for doses greater than what the kids actually needed (and then provided their own written instructions for how to use them) so parents really COULD stock up... given how strict many insurance companies are now with filling scripts on time, maybe that is what some drs did.
 
H

hmw

New member
Deidre~ unless we had a script written for a lot more than we used, we would never be able to stockpile our enzymes either as we can't fill them early and they are far too expensive to afford to do so on our own. It took us forever just to build up an extra few weeks supply; I am so grateful that Emily is on Creon and we never had to worry about what is happening now with those taking Pancrecarb and Ultrase and Viokase.
<br />
<br />It would have been nice if clinics had the foresight to deal with what is going on now and wrote scripts the last several months the enzymes were available for doses greater than what the kids actually needed (and then provided their own written instructions for how to use them) so parents really COULD stock up... given how strict many insurance companies are now with filling scripts on time, maybe that is what some drs did.
<br />
<br />
 
B

babyluke

New member
We use Creon 6 enzymes. We have always used them and they have worked really well for Luke. Just thought I would mention that in case you are going to have to switch to another brand of enzyme.
Luke also got his vest as soon as he measured the appropriate chest circumference. He was about 15 months old when he got his vest. He has done 30 min. twice a day for close to two years now and has done fine. He actually usually falls asleep during the evening treatment!
I know the rep. from the vest company told us that they like to make sure a family is familiar with doing PT manually and sometimes a clinic will post pone ordering the vest for that reason. Luke was diagnosed at 3 months and we had been doing cpt for a year, so our clinic did not have any problem with ordering the vest.
 
B

babyluke

New member
We use Creon 6 enzymes. We have always used them and they have worked really well for Luke. Just thought I would mention that in case you are going to have to switch to another brand of enzyme.
Luke also got his vest as soon as he measured the appropriate chest circumference. He was about 15 months old when he got his vest. He has done 30 min. twice a day for close to two years now and has done fine. He actually usually falls asleep during the evening treatment!
I know the rep. from the vest company told us that they like to make sure a family is familiar with doing PT manually and sometimes a clinic will post pone ordering the vest for that reason. Luke was diagnosed at 3 months and we had been doing cpt for a year, so our clinic did not have any problem with ordering the vest.
 
B

babyluke

New member
We use Creon 6 enzymes. We have always used them and they have worked really well for Luke. Just thought I would mention that in case you are going to have to switch to another brand of enzyme.
<br />Luke also got his vest as soon as he measured the appropriate chest circumference. He was about 15 months old when he got his vest. He has done 30 min. twice a day for close to two years now and has done fine. He actually usually falls asleep during the evening treatment!
<br />I know the rep. from the vest company told us that they like to make sure a family is familiar with doing PT manually and sometimes a clinic will post pone ordering the vest for that reason. Luke was diagnosed at 3 months and we had been doing cpt for a year, so our clinic did not have any problem with ordering the vest.
 
2

2girls

New member
I just spoke to a rep at Axcan Pharma and they are very hopeful that Ultrase will be approved by the FDA within weeks, not months. I really hope that is true, but we will deal with it. I am just glad Jack is older and taking enzymes super easily now - I just remember months ago how hard everything was and am thankful that he will probably adjust easier now. Can't believe my little guy is going to be a year next month - how time flies! We feel so blessed to have him in our lives.

Not sure if you are aware of this awesome site, but here it is for all of you mom's out there who love pictures of your sweet kiddos.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.littlestheroesproject.org/">http://www.littlestheroesproject.org/</a>
 
2

2girls

New member
I just spoke to a rep at Axcan Pharma and they are very hopeful that Ultrase will be approved by the FDA within weeks, not months. I really hope that is true, but we will deal with it. I am just glad Jack is older and taking enzymes super easily now - I just remember months ago how hard everything was and am thankful that he will probably adjust easier now. Can't believe my little guy is going to be a year next month - how time flies! We feel so blessed to have him in our lives.

Not sure if you are aware of this awesome site, but here it is for all of you mom's out there who love pictures of your sweet kiddos.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.littlestheroesproject.org/">http://www.littlestheroesproject.org/</a>
 
2

2girls

New member
I just spoke to a rep at Axcan Pharma and they are very hopeful that Ultrase will be approved by the FDA within weeks, not months. I really hope that is true, but we will deal with it. I am just glad Jack is older and taking enzymes super easily now - I just remember months ago how hard everything was and am thankful that he will probably adjust easier now. Can't believe my little guy is going to be a year next month - how time flies! We feel so blessed to have him in our lives.
<br />
<br />Not sure if you are aware of this awesome site, but here it is for all of you mom's out there who love pictures of your sweet kiddos.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.littlestheroesproject.org/">http://www.littlestheroesproject.org/</a>
 
C

carrierae21

New member
My dd got her vest when she was a little over a year... The magic number at our clinic was 20 inches. She does really well with it, we've never really had any issues. Enzymes- she takes Creon, we started with 5's (they are 6's now) and now she takes the 12's. Our docs write the script for extra (about 60/month) and we are also able to stockpile them. My pharmacy/insurance doesn't really enforce the every 30 days rule so I can get them after about 3 weeks. I also stockpile the TOBI and pulmozyme b/c my copays are a little ridiculous at the beginning of the year. I have to pay percentages until I reach my max of $1500, I pay 25% of Creon and 40% of the pulmozyme and TOBI and then I don't pay anything for the rest of the year. Needless to say, we hit our decuctable pretty much immediately! It's a pain in the beginning of the year and then it's great b/c we can get everything/anything filled (early) and there's no copay.
 
C

carrierae21

New member
My dd got her vest when she was a little over a year... The magic number at our clinic was 20 inches. She does really well with it, we've never really had any issues. Enzymes- she takes Creon, we started with 5's (they are 6's now) and now she takes the 12's. Our docs write the script for extra (about 60/month) and we are also able to stockpile them. My pharmacy/insurance doesn't really enforce the every 30 days rule so I can get them after about 3 weeks. I also stockpile the TOBI and pulmozyme b/c my copays are a little ridiculous at the beginning of the year. I have to pay percentages until I reach my max of $1500, I pay 25% of Creon and 40% of the pulmozyme and TOBI and then I don't pay anything for the rest of the year. Needless to say, we hit our decuctable pretty much immediately! It's a pain in the beginning of the year and then it's great b/c we can get everything/anything filled (early) and there's no copay.
 
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