Do you do nebs? How many and how often?

[anonymous]

I am the mother of a 17 month old daughter, Hayley, who has CF and I posted the question about CPT and the vest in infant/toddler Cfers. Some of the responses now left me with questions about "routine breathing (neb) treatments". I guess I just assumed that it was the norm and that everyone does the ned treatments all the time, even when healthy, but I am starting to learn that is not the case and I am very curious as to why.

My daughter was diagnosed at 3 months and has been on nebs since then. She does Xopenex 3 times per day and Pulmicort one time per day. She was hospitalized at diagnosis (long story but she was very sick, starting with reflux that aspirated into her lungs, had to have a Nissen and G-Tube, then came the CF diagnosis) But she has been fairly healthy since leaving the hospital. She has had about 4 infections in the last year, all treated with oral Augmentin, which cleared them up. But she does the three breathing treatments per day every day (4 if she is sick). She has only had a throat culture once in the hosptial and cultured Staph. (I plan on asking why they are not doing throat cultures at every visit next week at her clinic visit)

So finally, my question is to everyone, especially those of you with smaller children, what kinds of meds, nebs and CPT do you do with your child? And any information anyone can give me as to why those of you who don't do "routine nebs" can give me on why your doctor does not do them. ALso how oftern does your CF clinic to throat cultures on your child?

Thanks in advance for all replies!!!

Becky, Mom to Nathan, 4 w/o CF and Hayley, 17 months w/CF

 

[JazzysMom]

I am curious about this also. At our CF clinic the neb is part of the therapy. It doesnt matter is you do manual clapping or use the vest. The idea is to loosen up the sputum &/or open airways for the sputum to be cleared during the Chest PT itself. I understand how some of the meds might not be used unless one is actually sick, but many of them (i.e. albuterol, pulmozyne) I & my doctor considers maintenance meds.

 

[anonymous]

I agree....nebs and airway clearance are part of maintenance therapy. They should be done even when feeling well.

 

[anonymous]

My daughter is 12 and has CF/Asthma (double delta F508). She is not on routine neb treatments other than the Pulmozyme which she just started on this year. She does CPT twice daily (vest or acapella) of 30 minutes in the morning and 30 minutes at night. I asked her physician about other neb treatments such as albuterol and other things mentioned by other parents of cf children and he said he does not believe in using nebs at all times because the body can build up a tolerance & alot of the neb meds can stunt growth. She has only done nebs 3-4 times a day when hospitalized with pulmonary exacerbation which has been once. Other than that she is doing well with good PFT's of FEV1 98% and FVC 100%. She used a foradil inhaler for her asthma and this med is 12 hr extended release.

 

[anonymous]

Hi. My 3 yr old daughter doesn't do any nebs unless she is sick. We do CPT twice a day and more if she is sick. Allie was diagnosed at a different hospital than where we go now. The first hospital told us to do nebs twice a day before her CPT but the new hospital says no nebs unless she is sick b/c the risk of her getting a bacteria from the neb is greater than it doing any good when she isn't sick. Her new doctor also said the nebs really aren't doing much good unless she is sick. They aren't preventive.

Also, about the throat culture. We do one at every visit b/c it's better to treat the bacteria before symptoms of infection start to show. I would definitely ask about this.

Thanks. I'm curious to see what everyone else does. Allie was only diagnosed last year so we are still learning too.

Amy

 

[arabeth]

I have 2 daughters with CF, a 10 year old and a 6 year old. They both do nebs and CPT twice a day. They usually alternate the Vest and the Acapella for CPT and they use Mucomyst and Albuterol in their nebs. My older daughter is on Pulmozyme but my youngest is not. Throat cultures are done at every clinic visit (every 3 months). I thought that was routine at all CF Centers. I think it definately should be. Both my daughters are doing very well but I would not stop their nebs. I'd rather be safe than sorry. I know there is a huge difference between my daughter now and prior to her diagnosis without nebs treatments. My 6 year old's last FEV1 was 172%. The therapist said it was the highest she'd ever seen. My 10 year old is usually around 123%. She had a much rougher start in life, suffering undiagnoised for 3 years but has done really well since then. She has been on nebs a minimum of twice a day since her diagnosis. My younger daughter has been on them twice daily for as long as I can remember too. I am not sure exactly what age they started it but I know she was very young. It's very hard to know what's best for our kids when we see CF Centers doing things differently. We all want what's best for our children. Sometimes it's hard not to compare with other CF Centers and wonder if what ours is doing is best. Be open with your doctors though. Even if you don't agree with something they are (or are not) doing, I'm sure they have logic behind it and that will help you know at least why they are doing what they are doing. You can certainly still disagree and they should be open to listening to your concerns.

By the way, we've moved around a bit and have gone to 4 different CF Centers over the years. They always did throat cultures at every visit and always kept the girls on routine nebs so I think that is the norm. I'm sure there are those who do things differently however. Best of luck to you.

 

[anonymous]

My daughter does advair 250/50 in the morning and then CPT ( vest ) in the afternoon she does albuterol and her vest again and at night before bed she does advair her vest and then her pulmozyme. When she is sick i increase her vest to 4 x a day and increase her albuterol. She is 9 years old and has always done nebs since being diagnosed at birth. Her FEV1 is 108%

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Question??
How can FEV1 be greater than 100%? I believe this usually indicates some type of error in the testing or something. How can you blow out greater than 100% of the air that you have in your lungs?

 

[anonymous]

I have asked my Cf Team about this and my doctor says that :-

They do not use Nebs unless your child is sick because they can get immune to them....also what are you treating if they dont actually have an infection...
Like a previous entry you can also get bacteria from the Nebs...
My baby also has a cough swab done so they can catch the bacteria early and treat it will the correct anti bio's this is every 3 wks at the mo and then it will go to every 2 mths....

Here in the UK they do not give glunutrients or whatever u call them on a regular basis because when your child does become sick there is no where for them to go ...if you then give them a boost when they are ill this obviously helps... A recent study here showed that treatment it needed at the correct time with diet and bacterial infections..
Paula

 

[luke]

It is not uncommon to have a FEV1 greater than 100%. That percentage is only the amount of air actually blown compared to what the computer thinks you should blow. The predicted value is based on height/weight/race/age but is not an absolute number, only a predicited. We are all different and not every child that is 3 foot tall and 40 pounds would have the same size lungs. That is normally why young patients have an increased FEV1. Also some diseases in their later stages can cause your lungs to expand and cause "super lungs", bascially the lungs get bigger to help compensate for their lack of function. Hope this helps clarify, that it is not an error in testing but probably just a good test.


Luke

 

[luke]

Renee,

I am surprised to see your child takes mucomyst, can you tell it works for her? Almost every pulmonologist and CF doc I know refuses to use that stuff anymore, they would rather use hypertonic saline or pulmozyme, just curious????


Luke

 

[anonymous]

Luke - thanks for clearing up the question on the PFT percentages. Also I am surprised about the child with CF that takes mucomyst. Does that not have a very drying effect unless you drink like tons of water and actually have alot of stuff to clear from the lungs?

 

[JazzysMom]

Our CF clinic stopped using Mucomyst years ago. Not only because of the new meds introduced, but they found the Mucomyst realled aggrivated Hemoptysis.

 

[arabeth]

In response to the questions about Mucomyst, I have had the same questions from my current CF Center... They were suprised to hear that the girls are on Mucomyst as well. However, it was Dr. Milla at the University of MN who put both girls on Mucomyst. He does not routinely recommend Pulmozyme but is very much in favor of Mucomyst. Every patient of Dr. Milla's that I know of is on Mucomyst. I know that differs from the norm but if you look at their record at the U of MN, it's hard to argue with their procedures. It's for that reason that I keep them on it. I trust Dr. Milla with everything I have. Our current CF Dr (in TX) has mentioned taking the girls off Mucomyst but I have not allowed the change at this point. With PFT's where they stand and things going as well as they are, I don't see any need to mess with their meds. The only reason my older daughter is on Pulmozyme is because she was already on it before we moved to MN and started seeing Dr. Milla. He said he didn't want to take her off since she was already on it so he just left it alone.

 

[cfmomma]

What CF doctor do you see in Texas? My son goes to Dr. Prestidge at Children's Medical Center of Dallas. I've never heard of Mucomyst, what is it?

 

[anonymous]

Hi Becky, you already know my answers but I figured I would post them in case anyone else was curious about this:

Sydney (2) hasn't done any nebs since April when she finished her round of TOBI after having 4 pseudo-free cultures. She has a prescription for Albuterol but has only done it a few times.

She doesn't do them because right now, she doesn't need them. She doesn't have breathing trouble (good lung function), doesn't have any infections and doesn't have extra/thick mucus (her CT Scan confirmed this).

She gets cultures at every clinic visit (every 3 months) and sometimes her ped. will do them alsl at her well visits.

HTH,
Kelli (mom of Sydney 2wcf)

 

[anonymous]

Hi! My name is Ashley. I have a 2 year old, Whitney, who was diagnosed at 11months. She does her vest twice a day, unless she is sick. We do it 3 to 4 times a day then. She takes pulmozyme every day. She does TOBI twice a day for a month at a time. She does a month on TOBI and a month off TOBI. We do the albuterol inhaler before treatments to open the airway. After reading the other entries, I am curious if anyone else out there does TOBI this often? I am a little worried about side effects and resistence to it.

 

[2sickkids]

My sons both do pulmozyme and albut twice a day. I do cpts on them four times a day each. Throat cultures every two months.