How to juggle therapies and homework

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smiles

New member
Does anyone have any helpful tips on how to better manage our evening routines with our 2 CF daughters, ages 11 and 13? As they get older, homework becomes more time consuming and it's often a struggle to get everything done at a normal hour.

They come home at 4:30 from school and we try to get EACH of them fed, two masks (1 on their off month), PEP and HOMEWORK before 9:00- 9:30 so that they could get hooked up to their g-tubes and sleeping at a normal hour.

They are not motivated to do PEP on their own and the masks (especially the TOBI) can take 45 minutes to an hour each.

How do you fit it all? And how do you all stay sane?
 
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Ratatosk

Administrator
Staff member
Tobi should only be taking 20-25 minutes. So you may want to check your compressor. That's how we found out our Pari Proneb Ultra was faulty. Was taking 50 minutes. Got a new one and treatment times went much faster.

DS is a 3rd grader and we struggled with homework in 1st & 2nd grade. We get home at 5 and he does his vest & nebs. Eats supper. Then it's time for homework. Then he does another treatment at 9 before bed. Some nights he doesn't get down time to play, but we've always emphasized that vest times are his free time to play video games, ipad, watch tv. A friend of mine has her kid do homework while vesting and I guess she's pretty good at writing while doing homework.
 
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Rebjane

Super Moderator
It is hard to fit it all in. My son without CF has anywhere from 1-2 hours of homework a night and this is after soccer practice etc. My daughter with CF is only in 4th grade so has nowhere near as much homework but I wonder how she will fit it in.

My daughter also can read while she nebs and VESTs; it fairly remarkable actually. She can also do her homework while doing her nebs and VEST. I have warned her teachers that many times she is nebbing and vesting while doing homework so her penmanship will not be perfect. However, her handwriting is certainly much better than mine so it's a fair trade off.

We have a tight routine. A little thing may throw it off but we try to stick to it. Multi=tasking is our friend.
 
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Ratatosk

Administrator
Staff member
I've wondered, too about how some of DS' friends who are in sports do it. Last year we ran into a classmate who has gymnastics from 4:30-7:30 and then has a bedtime of 8:30. Or the hockey kids with early morning or late night practices and games. Not much time for school work if they get home from school at 3.

We keep to a tight schedule, too. As for multitasking, I'll admit we let him snack while vesting, as does a friend of mine's daughter. And I worry that DS may be losing out on sleep, being that most of his classmates are in bed before 8:30 or 9, but we do what we can. I let him sleep as long as possible in the mornings and he sleeps thru his early morning vest & nebs.
 
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smiles

New member
We don't do the vests- sounds like a big time saver! The clinic our daughters go to, don't recommend it yet. Not sure why.

As far as compressors, the PARIs are real slow. I find that they work well for only for a few weeks after I get them fixed and then they slow down considerably. What compressor do you use?

When do you fit in time for exercise? On school days, our girls rarely have time for anything other then their homework, treatments, supper and shower.
 
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Rebjane

Super Moderator
Smiles,

The Pari compressor does not last long. We had one and it would break down every 3 months. I finally paid out of pocket for a Mobilaire compressor with adjustable Psi. It cuts down on time which is so precious. It cost about $270 or so but is worth every penny.

For exercise my daughter right now is doing soccer through our local Y. On the days she has practice I have her use her albuterol inhaler (instead of nebulizing albuterol) and do her VEST but cut the time on it or she'll be late. Figure she will be running around outside anyway so it's fine.

THe VEST is definately good for lifestyle and maintaining independence. Plus you have not one but two kids with CF. DO you live in the US? If you have access to getting the Vest, I recommend getting it if at all possible.
 
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smiles

New member
We live in Ontario and the vest is not used here as far as I know.
We use the PEP device and it requires the girls total concentration for approximately twenty minutes each.

I think they're in the middle of a study to see if the VEST is as effective as PEP.
 
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Aboveallislove

Super Moderator
Rebjane,
we are having that same problem with our compressor. Can you elaborate on the adjustable PSI? Did your team recommend that one? I asked at last appointment for info on one to buy and no one got back to me so need to follow up too.
 
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Rebjane

Super Moderator
The Mobilaire compressor is made by Invacare. It is a heavy duty compressor. The Psi is adjustable meaning you can change is according to which drug you are nebulizing. I usually just leave it set at 20 psi. The Pari compressor the psi is 13 ( i think). I just think the compenents in the Pari neb were not meant for being used the way most CF'ers use them. I compare it to a blowdryer that stops working.

The Mobilaire is ok to use with CF drugs. I did not check with my CF clinic before purchasing it . But they know we use it. I still have the Pari compressor for travel.(It's lighter). The Mobilaire is a heavy duty quality piece of medical equipment. Figure we spend so much money and time on the medications being nebulized might as well have the compressor not poop out every 3 months.
 
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Ratatosk

Administrator
Staff member
We use a pari vios -- they're under a 5 year warranty, so when they start to break down we contact them and they ship us a new one. We discovered our orginal Pari was faulty after a relative gave us their old Devilbiss Pulmoaide and treatment took 20 minutes. So I bought a brand new one. That one is more bulky, so we use it for every day use and the pari we use for travel and when DS is playing xbox in the family room while vesting. I'd love to get a mobilairre at some point, but as long as pari's replacing theirs, I haven't felt the need to pull the trigger yet.

DS gets exercise at daycare. He goes after school from 3-5 and they play outside, go for walks and play sports. He also is in gymnastics. An hour one night a week and twice a week during the summers.
 
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scrapper1264

New member
Rebjane said:
The Mobilaire compressor is made by Invacare. It is a heavy duty compressor. The Psi is adjustable meaning you can change is according to which drug you are nebulizing. I usually just leave it set at 20 psi. The Pari compressor the psi is 13 ( i think). I just think the compenents in the Pari neb were not meant for being used the way most CF'ers use them.
Click to expand...

We had a few Pari's but they didn't last too long. We then had an Phillips Inspiration Elite (30 psi) that worked fine but wanted the Mobilaire (50 psi) to save time. We set ours at 30 psi for everything but Tobi, which should be 25 psi. Even though the Phillips is a 30 psi there is a huge difference with the Mobilaire, which I manually set at 30. Our CF nurse gave us a handout from the CFF website (Respiratory - Which Nebulizer for Which Drug?), which helps out a little with the settings. This saves a lot of time during our day, which is great since DS does not get home until 4pm.
 
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abeardsley

New member
my daughter was on Tobi, now she is on Cayston 3xdaily, runs for about 7 minutes each time. SHe does her homework while doing her treatments (she hates it though). after finished with everything, she is usually in the bed around 11pm. she is still getting use to this, its only been 2 years since she has been diagnosed ( I have to stay on her). hopefully it will get better
 
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jshet

New member
Have you tried using a mask for the nebs? My son is 15 and has autism, he is not able to use the tube to hold in his mouth because he chews on them like crazy. With the mask he is able to do just about anything since both hands are free.
 
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Aboveallislove

Super Moderator
We started the vest about 6-9 months but others do when 2 - 3. US doesn't have public centers--vests are covered by insurance/government, but a public center could be danger in any event b/c of cross-infections.
 
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