Treatments/Vest daily for mild CF

[anonymous]

My daughter was diagnosed at 10 yrs. old and she is said to have a mild case of CF. (only one mutation L997F, second not discovered yet)
She has never been hospitalized for CF but the Docs insist on daily albuterol and pulmozyme for her along with Ultrase 18. Is this typical treatment or is this unnecessary. Thanks for your help!!
Joan

 

[Purplelungs]

I was on albuterol since the get go when I was diagnosed in 1984. I think alot of doctors do this as a regulat regimine. Alot of cf is being prevenative. Some things seem unnecessary to me when you dont need it, like some antibotics when your not sick. Also starting a daily rutine now will help set one when shes older and needs it alot more.

 

[Diane]

Hi Joan,
I dont know how helpful ill be , but i also had a mild case of cf till i got b.cepacia( 8 -1/2 years ago) I didnt start actually using the vest regularly till about 2 -1/2 years ago. But when i was a child i didnt have to do any chest pt, ( they didnt have the vest back then) or any type of treatments. My doctor at the time found it unnecessary. I did take enzymes, (and antibiotics when i needed them). Now when i was in my 20's my new cf doctor wanted me to start doing all types of therapies and since i had never had to do them i couldnt see the sense. I kept telling him if i took aspirin every day to ward off a future headache, then when i eventually got that headache ....the aspirin wont work. We never saw eye to eye because of my unwilling attitude. I think today the standard therapies are that cf patients do therapies before the problems start to help stall any potential problems. It's hard to say if they are absolutely necessary, but i would recommend following your doctors advice, since he may be base-ing it on her pulmonary function tests. When i first got b.cepacia it was highly recommended that i start using the vest and i was still reluctant because i grew up thinking it was unnecessary. Maybe if i had used it ,my pft's might be better today....hard to say. Its probably a good idea to get her into a routine of using it now, so when she gets older and may go thru a rebelious stage, she may not argue the point as much, and just see it as a daily routine. Good luck<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

One thing is that albuterol is not something she will grow "resistant" too as far as I know-- if that is one of your concerns. The Pulmozyme may be something that looses it's effectiveness over time. Hopefully somone else can give a second opinion on that.
Is she coughing up stuff pretty regularly? I have a mild case & remember being made to do chest physical therapy as a kid & it was a waste of time as far as I was concerned because I just did not cough hardly ever and it didn't help me to cough either.
The enzymes are a good thing if weigh gain/maintanence is an issue. It wouldn't hurt to get a second opinion from another CF doc if that's something that's do able for you.
Like Diane said, they are being more aggressive nowadays then they used to be to prevent things instead of waiting until they happen, then treating them.

 

[Emily65Roses]

I don't know about the scientific evidence for Pulmozyme losing effect, so I won't pretend to. But personally, Pulmozyme is lovely. I've been on it for 11 years now, and it still works the same as it ever did. If I miss it, I can tell immediately the morning after, because I feel all congested and disgusting.

 

[anonymous]

That's good to know about the Pulmozyme still working after all this time.
I had to discontinue it for personal reasons, so probably shouldn't have given an "opinion" on it when I had only been on it for a couple of years. My bad<img src="i/expressions/face-icon-small-blush.gif" border="0">

 

[anonymous]

Thanks so much for all your help. Take Care, Joan

 

[Emily65Roses]

Hey, that's all right. Maybe it does lose effectiveness for some people. I don't know. I just know it still works wonderfully for me. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Hi My son is 3 and has cf. he was diagnosed at birth. (newborn screening) He is said to have a mild case so far. As of May he has been on no treatments. We were recomended to do pt 3x week. He is only treated with antibiotics if he gets a cold with a cough lasting more than 5 days. That has seemed to be his only problem but only happening 1x a yr. They seem to always call it bronchitis. I feel I need to be an avicate for his health and treatments. Do you think I should be asking about pulmuzyme? I know they mentioned maybe using it in the winters but when that time came last year it was never brought up. Chris

 

[Emily65Roses]

Absolutely, you need to be your son's advocate. If he's mild so far, he probably doesn't need the Pulmozyme. However, it never hurts to start meds before you *need* them so that you can stay in pretty good health for longer. If you think he may benefit from it, ask your doctor about it. I live on the stuff, myself.