Pulmozyme

L

Lu

New member
We have bought the Vest system for my 2 year old nephew Mark and had it delivered for Christmas gift. The Vest is working in the way that is clearing the lungs but not the upper airways and he is unable to expel the mucus. Marko is in the hospital right now and Doctor will not prescribe Pulmozyme because he believes that Pulmozyme will stop proper lung development. He is not using suction method either, but has placed the child on antibiotics even though the child has no infection. I do not understand the reasoning here and feel that I need more information from other parents. I am the only information and support link for this child's family. Is there another medication besides Pulmozyme that will work?
I am grateful for any information you can offer.

<a target=_blank class=ftalternatingbarlinklarge href="mailto:lprince2@tampabay.rr.com">Email me link</a>

Thank you so much <img src="i/expressions/rose.gif" border="0">
Lu
 
L

Lu

New member
We have bought the Vest system for my 2 year old nephew Mark and had it delivered for Christmas gift. The Vest is working in the way that is clearing the lungs but not the upper airways and he is unable to expel the mucus. Marko is in the hospital right now and Doctor will not prescribe Pulmozyme because he believes that Pulmozyme will stop proper lung development. He is not using suction method either, but has placed the child on antibiotics even though the child has no infection. I do not understand the reasoning here and feel that I need more information from other parents. I am the only information and support link for this child's family. Is there another medication besides Pulmozyme that will work?
I am grateful for any information you can offer.

<a target=_blank class=ftalternatingbarlinklarge href="mailto:lprince2@tampabay.rr.com">Email me link</a>

Thank you so much <img src="i/expressions/rose.gif" border="0">
Lu
 
L

Lu

New member
We have bought the Vest system for my 2 year old nephew Mark and had it delivered for Christmas gift. The Vest is working in the way that is clearing the lungs but not the upper airways and he is unable to expel the mucus. Marko is in the hospital right now and Doctor will not prescribe Pulmozyme because he believes that Pulmozyme will stop proper lung development. He is not using suction method either, but has placed the child on antibiotics even though the child has no infection. I do not understand the reasoning here and feel that I need more information from other parents. I am the only information and support link for this child's family. Is there another medication besides Pulmozyme that will work?
I am grateful for any information you can offer.

<a target=_blank class=ftalternatingbarlinklarge href="mailto:lprince2@tampabay.rr.com">Email me link</a>

Thank you so much <img src="i/expressions/rose.gif" border="0">
Lu
 
R

Ratatosk

Administrator
Staff member
DS has been on pulmozyme since he was about 2 1/2. To tell you the truth, I really haven't noticed a difference, except for a runny nose when he had more sinus problems.

Is he on albuterol or atrovent nebulized (bronchdialators)? We do that 3 times a day with CPT -- now the vest.
 
R

Ratatosk

Administrator
Staff member
DS has been on pulmozyme since he was about 2 1/2. To tell you the truth, I really haven't noticed a difference, except for a runny nose when he had more sinus problems.

Is he on albuterol or atrovent nebulized (bronchdialators)? We do that 3 times a day with CPT -- now the vest.
 
R

Ratatosk

Administrator
Staff member
DS has been on pulmozyme since he was about 2 1/2. To tell you the truth, I really haven't noticed a difference, except for a runny nose when he had more sinus problems.

Is he on albuterol or atrovent nebulized (bronchdialators)? We do that 3 times a day with CPT -- now the vest.
 
F

Foody

New member
You could ask about Mucomist (NAC - a precursor to GSH; see Amy's blog on Dr. Warwick's approach) or you could research GSH (Glutathione) therapy. We chose the latter and it works really well to keep his lungs clear. It also has other benefits but it is not currently used in most CF clinics (though it has been around for 10+ years). The CFF was studying it (oral and inhaled) last year but there has been no mention of the studies this year. There is a researched protocol established by Dr. Clark Bishop and he will work with other doctors/pumonologists. PM if you'd like more information.
 
F

Foody

New member
You could ask about Mucomist (NAC - a precursor to GSH; see Amy's blog on Dr. Warwick's approach) or you could research GSH (Glutathione) therapy. We chose the latter and it works really well to keep his lungs clear. It also has other benefits but it is not currently used in most CF clinics (though it has been around for 10+ years). The CFF was studying it (oral and inhaled) last year but there has been no mention of the studies this year. There is a researched protocol established by Dr. Clark Bishop and he will work with other doctors/pumonologists. PM if you'd like more information.
 
F

Foody

New member
You could ask about Mucomist (NAC - a precursor to GSH; see Amy's blog on Dr. Warwick's approach) or you could research GSH (Glutathione) therapy. We chose the latter and it works really well to keep his lungs clear. It also has other benefits but it is not currently used in most CF clinics (though it has been around for 10+ years). The CFF was studying it (oral and inhaled) last year but there has been no mention of the studies this year. There is a researched protocol established by Dr. Clark Bishop and he will work with other doctors/pumonologists. PM if you'd like more information.
 
K

Keirasmom

New member
My daughter has been on Pulmozyme for a couple of months now, ever since she got a cold and her upper left lung was inflamed. It seems to help her move stuff out... out Dr. did talk to us about using Hypertonic Saline when she gets older. You may want to ask about using that instead.
 
K

Keirasmom

New member
My daughter has been on Pulmozyme for a couple of months now, ever since she got a cold and her upper left lung was inflamed. It seems to help her move stuff out... out Dr. did talk to us about using Hypertonic Saline when she gets older. You may want to ask about using that instead.
 
K

Keirasmom

New member
My daughter has been on Pulmozyme for a couple of months now, ever since she got a cold and her upper left lung was inflamed. It seems to help her move stuff out... out Dr. did talk to us about using Hypertonic Saline when she gets older. You may want to ask about using that instead.
 
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