airway clearance?

[MOME2RT]

I have been reading a lot of posts in here about you have CF but the "need" for vest or CPTs are NOT being used...... I thought even if you dont "need" this you should still do them to prevent "build up", & to stay healthy, not just do them when you DO get "sick". OR to just maintain?! When Reece was brought home from the hospital (8 days old) we were told to do CPTs & use the neb. I know part of it was to get him use to it, but on the other hand he was NOT coughing etc. <img src="i/expressions/face-icon-small-confused.gif" border="0">
Leah mommy 2 Reece 3yrs old w/ CF

 

[ashton2005]

My son Ashton has been in the hospital for 9 weeks now and they have been doing nebs and CPT since he was about a week old.. They said that it will prevent and build up and be better in the long run if we start them now than if we were to wait. As of now since he does have a slight cough they are doing them 4 times a day it did used to just be 2 times a day but with the cough they increased it. He actually loves having them done he usually sleeps through them

Christi
Ashtons mom 9 weeks with cf
abbi's mom 5 yo w/o cf

 

[anonymous]

We've been doing CPT since DS was about 1 week old. His doctor stressed the importance of good lung care. If DS gets a cough or cold, extend the time and number of times CPT is done per day. I too keep hearing from people who say they were told not to do CPT until the lungs were affected. A friend of mine's daughter wasn't diagnosed until she was 1 1/2 and they had to hold the poor kid down while she screamed and fought -- DS usually is relaxed and falls right asleep. He's used to treatment.

I recently read an article about a person awaiting a lung tx who said when he started elementary school "they decided he didn't need to do cpt anymore" and on my TOBI calendar a person was quoted as saying she doesn't do CPT because she figures she gets enough exercise as a cheerleader.

 

[anonymous]

what is CPT. if it is Physio by using your hands it is better if your child is awake and not alseep as their breathing is more shallow once alseep and it doesnt benefit them as well as if they are awake.

 

[anonymous]

We just started chest pt on Bennett. He is 16 months old. They wanted to wait due to issues with it possible causing reflux. He has had no lung involvement.

 

[anonymous]

i heard that too, our doc says it really doesnt benefit if the child is asleep, cuz they need to cough and clear lungs too. Even if you dont have much in your lungs you still are most likely gonna cough.

 

[JazzysMom]

I understand the idea of the child being awake to cough it out, but the main idea is to keep things moving. Even if you do the CPT while a child is sleeping at least the action is keeping it somewhat loose & moving rather than just letting it sit there sticking more & more. I dont understand the idea of waiting until the lungs are "involved" to do CPT. Many times in CF this happen so quickly that before you know it there is lung damage. I believe in preventative maintenance. When your tire is loosing air on your car do you wait until you have a blow out it isnt completely flat? NO....its more work, $$ & aggrivation then just taking a little time to put air in it. Same thing with the CF lungs!

 

[Lilyb42390]

Precisely, it is soo important to have maintance care and when you do get sick add extra time and the number of times it is done.
For me my maintance care include a vest in the morning, a flutter at school, and then exercise afterschool, and finally another vest or PD at night...

I do it for about 40 min on maintance but if im sick or have ne symptoms like right now i up the therapy time to an hour and have my mom do more PD's. It is sooo important to do everything you can to keep you child well, and when they do get sick fight until the infection is gone.

HOPE THAT HELPS... i promise the work does pay off for the benefit of your child's health

::LILITH::
(15 w/ cf)

 

[anonymous]

We do CPT twice per day, every day, but have only used the nebulizer when there is a positive culture. Are you using in preventatively? What Rx?

Thanks, Stacy
Mom to Maren and Berne (9 mo. with CF)

 

[JazzysMom]

I use albeuterol & pulmicort twice daily as well as pulmozyne once daily. I only began PUlmicort this year & much of my difficulties is more asmthatic type problems which aggrivate the CF. If I am sick or having a hard time in general I have been known to do albeuterol every 4 hours. This was just to keep the airways open since when mine were closed down I developed an infection. Also this year I have started alternative Tobi & Colistin aeresols. Prior to this year I used Tobi every other month as a maintenance for the last year or so.

 

[anonymous]

Reece does his vest 2-3 x a day.... 4 when he is "sick". His dr. even likes that we do manual PTs when he is sick to target those yucky areas. He usally does his neb at the same time as the vest. Morning- albertuol, vest 20-30min. pulmozyme, then his 2 puffs of flovent. Then during the day he just does vest or CPTs & albeutrol. Then before bed the same thing as the morning time minus the pulmozyme........... I was just wondering WHY some CFers DONT maintain or do airway clearance when they are NOT sick.
Leah~mommy 2 Reece w/cf

 

[Haileysmommy]

Every day we do 2 puffs albuterol, 2 puffs flovent, then CPT for 10-15 min. We do this every morning and evening. She had been doing the CPT since she was diagnosed at 2 weeks. They just added the Flovent and Albuterol a few months ago.

 

[anonymous]

I do Damien everyday 4 Xopanax treatmeants with cpt and Pulmazyme 1 at night. I listien to threw a stethascope before and after hes treatment and u can hear the diffrance. we started out on Albuteral and it wires my baby up and the up and down took alot out of him. This last hospital visit they gave him Xopanax and they called it Albuteral without the zing. I read the pamplet and it is levelbutaral and I think it is so much better.

 

[thelizardqueen]

I know that when I'm sick with an infection I do the manual clapping with the hands, but when I'm not sick, I'll use my flutter. Does the job.

 

[tweeksgrandpa]

It is interesting to see all of the information and the comparing of treatments. Lots of good stuff. The doctors started our grandson on neb (albeuterol) and CPT (2x a day) when he was 4 months old. I of course questioned this because he showed no lung problem, as far as cough etc. What do I know. I suffer from asthma so I have used albeuterol (inhaler) for years. We went to the doctor the other day and due to the mild pnuemonia they upped it to 4x a day. The CF clinic has strressed to us, KEEP AIR WAYS CLEAR!
So we do it. As far as the other inhaled meds the CF doctor said we may need to start him on pulmozyme in a few months? His cultures so far have came back negative for pseudomonas.So they say no TOBI for now. There seems to be as many variables as well as commonalities with this strange disease. Our grandson is 8-1/2 months old. Was diagnosed after birth. Its funny, after becoming a first time grandpa, at 46yrs old, and seeing my grandson, and talking with others with CF and their families. I no longer complain (or at least not as much) about my petty aches and pains.

 

[luke]

Leah,


Please remember that doctors feel the best way to "control" our disease is by minimizing infections and their effects. So even though your child is clear and not coughing that doesn?t mean that there isn't mucous sticking to the inside of his lungs. The hope is that we keep the airways clear and decrease the chance of infection, which in turn decreases the need for antibiotics. Prevention and early detection is the best thing we have in increasing the long-term prognosis in CF patients. As you stated, it is important that you get your child regimented in his CF care so as life goes on it is just as normal to use a neb as it is to eat a bowl of cereal. Trust me...you guys will need this preparation for the teenage years

Have a great new year!


Luke RRT(30 w/cf and a beautiful wife and the dumbest dog in history)

 

[anonymous]

Both of my children were started on cpt when they were diagnosed at a few weeks old. We use it for preventative measures and I think it is essential to keeping their lungs clear. I really don't understand when people say there is no lung involvement so they don't do cpt. If someone has cf, then there is lung involvement. Salt and water do not flow properly in the cells, whether or not is something that we are able to "see" mucus build-up first hand. My children go to preschool a few times a week. They, thankfully, don't get sick while most of their friends do often. On the rare occasion they get a cold, it just goes away without a problem. My daughter (age 4) has been on an oral antibiotic once in the past three years for a cold. I am not sure what classifies no lung involvement, but I would never say that about my children. They both do cpt twice daily, 30 minutes at a time. My daughter inhales pulmozyme, mucomyst and hypertonic saline. All of these I think help keep her lungs functioning well. I also have a 8 year old nephew who was diagnosed after my daughter. He has never done cpt (except once when had pneumonia) even though he also carries both delta 508 genes. It is just his doctors and parents preference.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[JazzysMom]

Being an adult I also have a different aspect of the importance. I wasnt dx until I was 7 & then my treatment routine was not instilled in me by my parents. The longer I lived the less it was instilled. Ironically here I am 30 years after they expected me to be & the lack of diligence & discipline as a child has impacted my heath as an adult. I was very neglegent in doing treatments growing up & really didnt understand the consequences of it. Even tho I was dx at 7 I believe that if my parents would have instilled the importance & the routine with me it would have made it much easier on me as an adult since it would have been apart of my life like anything else I DID do for my CF! Like anything else in life if a child grows up knowing it they dont know any different & that usually makes it easier!

 

[anonymous]

We've been doing CPT since DS was about 1-2 weeks old with albuterol and atrovent. We do this for 15-20 minutes three times a day. Since he cultured pseudo at 3 months he's been on tobi twice a day every other month and they just added pulmozyme once a day. We've asked about CPT and different positions, tilting the child upside down, etc. but his doctor said doesn't matter position-wise and whether or not they're awake or sleeping. The CPT gets the cillia in the lungs to move things up and out. Prevent infections.

Liza

 

[fourkidsmom]

Our Brady is going to be 5 in March and since birth he has done 4 breathing treatments a day with percussion. He is on albuterol- 4 x's a day, pulimcort twice a day and pulmozyme once a day. We have always done 4 a day about every 4 hours during the day. He now has the vest so he will do the first breathing treatment at 7:30 a.m with the vest, 2nd breathing treatment at 11:30 a.m. with hand percussion, around 4:00 p.m. breathing treatment with hand percussion and the last breathing treatment we do about 9:00 p.m. with the vest. We are just used to it now. He doesn't cough much. When he is sick they up it to 2 pulmozymes a day and breathing treaments around the clock every 4 hours with vest and hand percussion. Seems like our cf doctors are very agressive, but we feel comforatble doing what they want and we feel we are doing the best we can for Brady. Hope this helps you.

Angie
Step-Mom to Brittany 13 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 4 with cf
Mom to Taylor 3 no cf, but chromosome 9q deletion q21.2 q22.1