HELP - Daughter can't breath after 2.5 minute competitive cheer routine-what to do?

Aboveallislove

Super Moderator
This thread has made me realize my total lack of understanding basic biology. I guess I always thought if you could "inhale" and take in air that while it might be difficult there wasn't an issue. But it sounds like that's not true. Could someone educate me on this? If it is possible that not catching your breath and the type of difficulty your daughter is facing is dangerous for other organs, as a mom, I would immediately stop the activity until I had a visit with the doctor and discussed the issue and assured myself that it was not dangerous. And then if not dangerous, learn how to better handle the issue, with the ideas noted above. Until then, it would seem practicing would keep up the exercise component without the difficulty she experiences during competition. Hopefully she can get in soon!
 

bigstar

New member
I think 2roses pretty much covered the issue! Just dont panic! Talk to your doctors! Maybe she need a broncholidator and this makes the whole thing go away! Exercise is so important! Oh one last thing! A stress test would be a very efficient way for her doctors to check her body during exercise! They could take a very good idea about heart rate, saturation, ventilation, fatigue, sweat etc! Hope it helps!
 

Jennyvb17

New member
I have to say I'm with bill on this one. Exercise and doing what you enjoy is important, but you shouldn't be putting your health at risk to do so.
There will come points in her life she will have to not do the things she wants because of this disease.
It sounds like she is coming very close to passing out, If she needs help from a partner. Any kind of oxygen deprivation is terrible for the brain.
She needs to stop until she is seen by a dr
 

CrisDopher

New member
You need hard data, that's what this boils down to. She needs to wear a tracking pulse oximeter for a few practices and routines and see what's going on. If she can maintain sats, then hell yeah the exercise is probably good for her. But if her sats are dropping, that MUST be addressed.
 

Printer

Active member
Chris, as you have read, I am out of date. Will the "tracking pulse oximeter" help when she is at the top of the pyramid, passes out and falls backward? Just asking.

Bill
 
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65rosessamurai

Guest
Theory before Reality, I'm sure if the CF doc thought a "Tracking Pulse Oximeter" was necessary, he would order it. If my terminology is correct, the "Tracking" means it logs data to be acquisitioned after the duration of testing is over.

Printer had it right, just probably needed to elaborate to avoid excessive questioning.

Back on the subject, like Printer, I also had been in sports that, in the beginning, was shunned by doctors. My mom, being a bit of a rebel, allowed me to play but watched me carefully.

In the situation with 2.5 seconds worth of stamina, it shouldn't be dismissed and should be discussed with "the" CF team involved. It could be something that ranges from a simple adjustment of medication to something more serious if not brought to attention.

That's the input from a person wh0's dealt with CF for nearly 40 years.


-Good Luck and Cheers!
 

CrisDopher

New member
Tracking, recording, whatever you want to call it. Borrow or rent a Nonin 3000 or 3500 or similar device and see what's REALLY going on with her sats during these routines. If that leads to simply ruling out sats as part of the problem, then you're down to possible exercise-induced bronchospasm or the like, which can be addressed. All of it can be addressed. But sitting on this forum hand-wringing and saying "out of breath after 2.5 minutes" isn't enough data for doctors to go on to fix the problem because it points to a whole bevy of problems, some of the related to each other, some not.
 

Printer

Active member
Cris:

I hope that the OP follows your advise. You seem to have thoughts similar to hers. I hope that she reports back here and tell us that her DD set a new world record for running the mile. I also hope that CF will be CURED TOMORROW.

Bill
 

Printer

Active member
Bill - pretty out of date opinion. You obviously didn't read the entire post. Also, her pulmonologist - one of the most well known in the country...considers exersice part of her lung therapy and is concerned when she is not competitively cheerleading.

Melissa:

You are a very kind and considerate woman. I do have to disagree with your post telling us that the OP has been disparaged. When she said "Bill--pretty out of date opinion" I hear, Bill you are old and stupid, GO AWAY.
 

Printer

Active member
My 16 year old is a competitive cheerleader - deltaF508. 50% lung function baseline.
she does hypertonic saline (not consistently), vests 2x per day, ventolin inhaler, advair, singular, pulmozyme.....

She is a flyer, stunts, jump, center pyamid, and dance - they have cut her out of some of the routine so that she can stunt and finish the routine - so that has been altered. Quiting or cutting her out of more of the routine is not an option. She loves this.

However, it is like she is sprinting for 2.5 minutes. She always makes it through the entire routine because she is mentally tough, loves what she does and willing to push her lungs. However, breathing is very difficult for her after the routine, her backer many times will carry her off. Her lips are NEVER blue but she has a very difficult time catching her breath and will take a few minutes of her gasping for air. Ventolin does nothing as she can't inhale.

I need before and after suggestions... should we get an oxygen tank, should she be doing a nebulizer before the event, ie a few hours and immediately after...

We have a Mom here, with a 16 year old DD with what she tells us is a 50% baseline lung function. DD is a "competitive cheerleader" and as such is having problems with the basic cheerleading. "they have cut her out of some of the routine-so she can stunt and finish the routine". We then find that after 2.5 minutes she cant breath, "...she has a very difficult time catching her breath and will take a few minutes gasping for air." "...she can't inhale". "Her backer will many times carry her off."

Now Mom is not asking about lung, heart or brain damage. She only wants to know ...should we get an oxygen tank, should she be doing a nebulizer before the event"

A very healthy high school student in Madford, Massachusetts, fell from the top of the pyramid, while practicing, hit her head and died. A VERY HEALTHY young woman.

Under the best of conditions, this is a dangerous sport.

I think that the OP has been handled with kid gloves.

Bill
 

swatterson

New member
Update

Hello everyone. First I want to thank everyone for sharing your opinions, concerns and support. I appreciate it and we had a CF MD appt 3 days after the post so I had the opportunity to share some of your thoughts and opinion.

BTW - are there really people out there that don't have a close relationship with their pulmonoligist? Suggesting that I speak to him was a bit insulting as he is practically family after 16 years, appts about q6 weeks and biannual hospitalization...I posted on this site as I wanted the patient/CF athlete perspective, you live it, MDs don't. Anyhow onto the meat...

At the visit, PFT was only 39--so part of her issue at the competition was a cold settling in. She is not at the point where she is going to pass out during the routine, and get dropped on her head or miss a tumbling pass - 50% LF is still pretty good (for her). Also note being carried off stage is part of her teammate's love, support and motherhenning. Zoe isn't the only one exhausted after a routine.

MD opinion: in order to get a script for O2 they need an 24 hr O2 study - which would be pointless as she doesn't have O2 issues at rest. Even after a competition 2 years ago-we took her to the onsite paramedics and her O2 was 97. MD said although a little O2 wouldn't hurt her and would probably make her feel better/comforting - he doesn't recommend because it would also increase and inhibit her CO2 build up from escaping and that IS important.
Question is: how do we open up her airways prior to competition? We are going to try some of your suggestions with MDs blessing: ie hypertonic saline the night before (we will commit to doing this 3 times a week prior to practice and competition) nebulizer abuterol 1 hr prior -NOTE abuterol puff just prior doesn't help and just after doesn't help as it takes time to actually work and open the airways, so 30-1hr prior should help. He isn't concerned that she is damaging any other organs due to expercise or her 2.5 min of competition. We are scheduling an appt for an exercise study at the clinic and will try to simulate competitions. As you noted: more concrete acute info will provide more information. Unfortunaltely there are no new therapies to open her airways except for what you and I have already sited....but knowledge is power...

Lastly - I didn't see the "cortisol" post prior to the visit so I will be emailing her CFMD to consider this angle to - she is on low dose 20mg prednisone for the last few years...this is worth the investigation.

Please note exercising is also good for insuline promotion - which is helping Zoe delay the CRFD Dx and insuline injections... I will keep you posted so we can continue to support each other and continue to promote exercising in CF patients.
THANK YOU THANK YOU THANK YOU and I wish I could post a video of her at a competition, it would make most of you smile! Happy Thanksgiving.
 
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65rosessamurai

Guest
Hi Swatterson,

Thanks for the update.

One thought that went across my mind is her breathing.
I realized through all of my strenuous activities, that of all things important, knowing how to breathe was among them.

I've heard that deep breaths will open passage ways, so if she gets into a routine to breathe deeper, while nebbing, perhaps it will help with her volume and clearance (this was never mentioned, so I don't know if she's already doing it).

The next is while excercising to be aware of how breathing is controlled in the beginning, and how to change it in order to have more endurance.

Some "Sports" I've done required to inhale before a technique and exhale during the technique. Rare cases was to hold the breathe before releasing it, but that's not a strenuous "Sport" I'm doing.

But, if she's able to use her diaphram while breathing (like singing), perhaps that would be a start on her being able to increase her activity without being out of breathe so fast?

Of course, this is a suggestion to add to what the doctor has already mentioned, I'm just adding personal experience that I overlooked from the first reply I made.


good luck!
 

Melissa75

Administrator
Bill, I appreciate that you think I am kind and considerate :) I think you are up-to-date and contribute a lot. I'm especially impressed by your expertise in pancreas problems.

Swatterson, There was a recent NYTimes article that mentioned some studies about "ventilatory threshold." I'll paste in the relevant text below.

I mention it because that dance class I used to take made me go past my "ventilatory threshold," but because I had control of when I stopped, I believe it was healthy. I was pushing and growing, like when I played soccer or ran track and did sprints.

MAYBE your daughter can build (slowly and with supervision) past what is needed for a 2.5 minute cheer routine. And maybe her whole cheer team can get in on it. I'm not an athletic trainer but from years of track, soccer, dance, I've learned how to build, to push in increments farther or faster. That said, I also know that with lung disease, there are times when building is just not possible, and stasis is even the longshot, but I figure this is worth mentioning as a future possibility.

If part of the cheer practice was jogging a 400m or maybe an 800m, then doing some blocking/flips whatever, then running it again, the team might improve their cardio in ways that blocking the routines might not be doing. For a ten-minute mile, the 400 would come to about 2.5 minutes. A trainer could advise on what length of time and distances are best to train at.

http://well.blogs.nytimes.com/2012/11/19/updating-the-message-to-get-americans-moving/

In a series of studies, Dr. Ekkekakis and his colleagues found that as exercise intensity increased to the point where a person was on the verge of breathing so hard that it was difficult to talk — the so-called ventilatory threshold — people had different reactions. Some say they felt more and more pleasure, while others felt less. Beyond the ventilatory threshold, though, most felt bad. It’s complicated, though. A hard workout for one person can be ridiculously easy for another.


At one extreme are acutely sedentary people. “As soon as they get up and take a few steps, they are above their ventilatory threshold,” Dr. Ekkekakis said.


At the other extreme are athletes who cannot reach their ventilatory thresholds until their hearts are beating at nearly the maximum rate.


Even within fitness levels, there are individual variations. Some people actually feel their best when they surpass their ventilatory threshold.

It is not at all clear what is going on in the brain — why at some level of intensity a workout starts to feel good. Nor, Dr. Dishman said, is it known why a long endurance workout can feel good in a different way than a short workout with intense bursts of effort.
 

swatterson

New member
Zoe had a stress test and we are waiting on the results. What I do know is that her pulse ox didn't change, and her lung function (PFT) improved a little but basically didn't change. What we did notice is a 180-190 heart rate. Waiting on the cardiologist interpretation...will keep you posted.
 

Printer

Active member
In the Journal of the American Heart Association published in 2010, a new formula was introduced to calculate peak heart rates. Subtract 88% of your age from 206. (16 X .88= 14.08. 206-14.08=191.92

They go on to say "it is dangerous to exercise above 85% of your maximum heart rate. 191.92 X .85= 163.13.

Zoe tested between 180 & 190.

It took two months but I'm glad Zoe is finally getting the medical help that she needs.

Bill
 

Melissa75

Administrator
Swatterson, Hi, did you get an interpretation from your cardiologist on your daughter's tests? I hope she is doing well. I posted about my issues in the adults section in a thread keyword "hypotension". I am curious how your daughter's testing is proceeding and what you are learning.
Melissa
 
K

kots66

Guest
In the Journal of the American Heart Association published in 2010, a new formula was introduced to calculate peak heart rates. Subtract 88% of your age from 206. (16 X .88= 14.08. 206-14.08=191.92

They go on to say "it is dangerous to exercise above 85% of your maximum heart rate. 191.92 X .85= 163.13.

Zoe tested between 180 & 190.

It took two months but I'm glad Zoe is finally getting the medical help that she needs.

Bill

Thanks for that info Bill, didn't know about that formula.

I'm also hoping to hear a positive update from Zoe.
 

Printer

Active member
Zoe had a stress test and we are waiting on the results. What I do know is that her pulse ox didn't change, and her lung function (PFT) improved a little but basically didn't change. What we did notice is a 180-190 heart rate. Waiting on the cardiologist interpretation...will keep you posted.
The stress test was on or before 1-12-13. It doesn't take 2 weeks to get results. Mom will not come back here and tell us her DD was in danger of death by continuing with her activity.

Bill
 
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