Pulmozyme question

A

anonymous

New member
The University of Minnesota did a study on Pulmozyme. They found that it helps some and that it does not help others. Just like what people are saying. I guess people should try and it see if is benefical to them. I was told for those it doesn't help at least it is bringing more moisture to the lungs. They instead recommend mucomyst to their patients. Sophia take mucomyst and pulmozyme. Like I said before, I think it works for my children. The link to the study is <a target=new class=ftalternatingbarlinklarge href="http://thorax.bmjjournals.com/cgi/reprint/53/12/1014
">http://thorax.bmjjournals.com/cgi/reprint/53/12/1014
</a>
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
A

anonymous

New member
The University of Minnesota did a study on Pulmozyme. They found that it helps some and that it does not help others. Just like what people are saying. I guess people should try and it see if is benefical to them. I was told for those it doesn't help at least it is bringing more moisture to the lungs. They instead recommend mucomyst to their patients. Sophia take mucomyst and pulmozyme. Like I said before, I think it works for my children. The link to the study is <a target=new class=ftalternatingbarlinklarge href="http://thorax.bmjjournals.com/cgi/reprint/53/12/1014
">http://thorax.bmjjournals.com/cgi/reprint/53/12/1014
</a>
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
H

hlgconk

New member
My six year old daughter started Pulmozyme about a month ago. The only side effect that we notice is excessive coughing. She does seem pale since starting all of her treatments, not really sure what it is all about. We were told that pulmozyme would work to her benefit as an adult, she'd bounce back quicker from illnesses. We are new to CF and are still learning.
 
H

hlgconk

New member
My six year old daughter started Pulmozyme about a month ago. The only side effect that we notice is excessive coughing. She does seem pale since starting all of her treatments, not really sure what it is all about. We were told that pulmozyme would work to her benefit as an adult, she'd bounce back quicker from illnesses. We are new to CF and are still learning.
 
J

jaybird

Guest
My little guy was diagnosed at 10 months and has been on pulmozyme daily ever since. He'll be two in May.
 
J

jaybird

Guest
My little guy was diagnosed at 10 months and has been on pulmozyme daily ever since. He'll be two in May.
 
A

anonymous

New member
Becky,
Our son has been on pulmozyme since he was hospitalized when he was 11 months old due to a CF infection. He is now 4 y.o. and still on it 1x/day. I think it has worked wonders because (knock on wood) he hasn't been hospitalized since and has been actually quite healthy. I can't say i have really seen any side effects from doing the nebs. with the pulmozyme. I really think you will be amazed at how much healthier your daughter will be on this. Good luck!

Jodi, Mom of Tucker w/cf
 
A

anonymous

New member
Becky,
Our son has been on pulmozyme since he was hospitalized when he was 11 months old due to a CF infection. He is now 4 y.o. and still on it 1x/day. I think it has worked wonders because (knock on wood) he hasn't been hospitalized since and has been actually quite healthy. I can't say i have really seen any side effects from doing the nebs. with the pulmozyme. I really think you will be amazed at how much healthier your daughter will be on this. Good luck!

Jodi, Mom of Tucker w/cf
 
A

Alyssa

New member
My daughter started on Pulmozyme when she was 13 years old (she is now 17) -- we would have/should have started earlier but she was misdiagnosed at 5 years old when they did three sweat tests and they all fell in at about 38 (below the borderline 40), so they told us she did not have CF. It wasn't until she was 13 we got the genetic testing done.

Anyway, we have not seen any side effects. Only good things to say about it -- it works, the mucus is thinner and easier to cough up and we believe it has cut down on the amount of lung infections she gets -- prior to her diagnosis she had 5 lung infections in 9 months -- nobody knew why????? After the CF genetic testing and the Pulumozyme and CPT she has maybe 2-4 infections a year.
 
A

Alyssa

New member
My daughter started on Pulmozyme when she was 13 years old (she is now 17) -- we would have/should have started earlier but she was misdiagnosed at 5 years old when they did three sweat tests and they all fell in at about 38 (below the borderline 40), so they told us she did not have CF. It wasn't until she was 13 we got the genetic testing done.

Anyway, we have not seen any side effects. Only good things to say about it -- it works, the mucus is thinner and easier to cough up and we believe it has cut down on the amount of lung infections she gets -- prior to her diagnosis she had 5 lung infections in 9 months -- nobody knew why????? After the CF genetic testing and the Pulumozyme and CPT she has maybe 2-4 infections a year.
 
A

anonymous

New member
My son almost 4 years old is on no medications for Cf. We were told to do cpt 3X week and was just recently given the rx for pulmozyme in sept. We were told at that time to use it when he gets a cold. Thankfully he hasn't even had a sniffle yet. However he seems to always get sick between late march and early may and requires an antibiotic. Now I might ask at our next appt if he should be using it daily. It is amazing how everyone is treated so differently.
 
A

anonymous

New member
My son almost 4 years old is on no medications for Cf. We were told to do cpt 3X week and was just recently given the rx for pulmozyme in sept. We were told at that time to use it when he gets a cold. Thankfully he hasn't even had a sniffle yet. However he seems to always get sick between late march and early may and requires an antibiotic. Now I might ask at our next appt if he should be using it daily. It is amazing how everyone is treated so differently.
 
A

anonymous

New member
My son has been on Pulmozyme since his diagnosis 5 years ago (right before his 1st birthday). His PFT's are great and besides a few set backs, he's done really really well. I'd encourage you to look into it and give it a try! Carey
 
A

anonymous

New member
My son has been on Pulmozyme since his diagnosis 5 years ago (right before his 1st birthday). His PFT's are great and besides a few set backs, he's done really really well. I'd encourage you to look into it and give it a try! Carey
 
A

anonymous

New member
Daughter has been on Pulmozyme since age 7 (now 13). It definitely makes the mucus thinner and this is her biggest complaint about the medicine (believe it or not). She says its alot easier to cough up the "chunks" when she isn't on the Pulmozyme as opposed to having her mucus "like water in my lungs". But, she still takes it once a day after using her vest.
 
A

anonymous

New member
Daughter has been on Pulmozyme since age 7 (now 13). It definitely makes the mucus thinner and this is her biggest complaint about the medicine (believe it or not). She says its alot easier to cough up the "chunks" when she isn't on the Pulmozyme as opposed to having her mucus "like water in my lungs". But, she still takes it once a day after using her vest.
 
A

anonymous

New member
Hi Becky,

My daughter was diagnosed in the womb, so she has pretty much been doing the cf treatment regime since birth. I think she was started on pulmozyme when she was 3 weeks old!! We didn't even half the dosage?? She is 20 mo. now and is still on the one vial in the morning once a day. Our cf docs told us the sooner she was on it the better in the long run. That it did thin the mucus and in my opinion i think b/c she was on it so soon i have never seen her mucus thick or her coughing on thick mucus when she is sick?? It is the best FDA approved cf treatment out there at this point, so i would put her on it right away!! And they know it... last year it cost us $440.00 a month but we switched to an HMO this year it is costing us $20.00 a month!!! All in all i have had no negative experience and it seems like Brinly is the only baby that has been on it at such a young age!?! I also noticed that you do vest 3x day along w/ 5 treatments-- i don't know and i am not a doctor but does Hayley have thick mucus and is that why you do the vest 3x day?? We are not on the vest yet hopefully in 3-4 months!! Anyway just a thought that the pulmozyme would break down that mucus and you could do vest 2x times?? Like i said it is just a thought??? We only do xopenex/intal 2x a day with cpt 2x day and when she is sick we up her treatments to 3x aday!! Also Brinly weighs 25 pounds for 20 months but we just switched her enzymes and she seems to be gaining more?? Have you thought about switching her enzymes-- i know it is scarey i was scared to switch but i feel like she is eating less being more satified and feels heavier!? We go to cf clinic next week and we will see how much she has gained?? She has only been on 1/2 cap. Creon 5 for one month and before that she was on 1 cap. Ultrase. We even had to go down on the amount??? Just another thought...
Blythe
mom to Brinly 20 mo. w/cf, Birgess 4 w/o anf baby due 8/8 w/o
 
A

anonymous

New member
Hi Becky,

My daughter was diagnosed in the womb, so she has pretty much been doing the cf treatment regime since birth. I think she was started on pulmozyme when she was 3 weeks old!! We didn't even half the dosage?? She is 20 mo. now and is still on the one vial in the morning once a day. Our cf docs told us the sooner she was on it the better in the long run. That it did thin the mucus and in my opinion i think b/c she was on it so soon i have never seen her mucus thick or her coughing on thick mucus when she is sick?? It is the best FDA approved cf treatment out there at this point, so i would put her on it right away!! And they know it... last year it cost us $440.00 a month but we switched to an HMO this year it is costing us $20.00 a month!!! All in all i have had no negative experience and it seems like Brinly is the only baby that has been on it at such a young age!?! I also noticed that you do vest 3x day along w/ 5 treatments-- i don't know and i am not a doctor but does Hayley have thick mucus and is that why you do the vest 3x day?? We are not on the vest yet hopefully in 3-4 months!! Anyway just a thought that the pulmozyme would break down that mucus and you could do vest 2x times?? Like i said it is just a thought??? We only do xopenex/intal 2x a day with cpt 2x day and when she is sick we up her treatments to 3x aday!! Also Brinly weighs 25 pounds for 20 months but we just switched her enzymes and she seems to be gaining more?? Have you thought about switching her enzymes-- i know it is scarey i was scared to switch but i feel like she is eating less being more satified and feels heavier!? We go to cf clinic next week and we will see how much she has gained?? She has only been on 1/2 cap. Creon 5 for one month and before that she was on 1 cap. Ultrase. We even had to go down on the amount??? Just another thought...
Blythe
mom to Brinly 20 mo. w/cf, Birgess 4 w/o anf baby due 8/8 w/o
 
A

anonymous

New member
My 18 yr old started Pulmozyme shortly after it was available, when she was about 10. I'll never forget, after 3 days use she woke up in bed and exclaimed, "I'm not coughing!" I think I cried. She has used it since, with no side effects that we know of. She can still tell the difference if she misses. I am excited about the new saline treament though, I hope we can reduce the cost of treating Cf this way.
 
F

fourkidsmom

New member
Hi our soon to be 5 year old started pulmozyme at about 2 years of age, he has done it every morning now since, when he has been sick in the hospital they do it twice a day. He does a regular treatment of albuterol and broncho saline at 7:30 a.m. with his vest for 20 minutes,then he does his pulmozyme then another breathing treatment 4 hours later with Pulmicort and albuterol and we do 20 minutes of hand percussion, and 4 hours later another breathing treatment with albuterol and broncho saline with 20 minutes of hand percussion and then 4 hours later pulmicort and albuterol again with the vest for 20 minutes. Whne he is sick in the hospital we do breathing treatments every 4 hours around the clock. I recommend the pulmozyme, I know it is overwhelming putting in a new medicine, but once you start I think you'll be glad you did. Our son is now on 13 med's a day some of then 2 times a day and I was just thinking tonight it isn't that hard anymore, it is just life. Things could always be worse! Good luck with everything.

Angie
Step mom to Brittany 14 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 4 with cf (5 on 3/14/01!!!!!!!!)
Mom to Taylor 3 no cf, but chromosome 9q 21.2 q 22.1 deletion
 
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