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

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swatterson

New 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...
 
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chris27rocker

New member
I'm in a little different place than your daughter - 30% baseline - but I'm a mentally tough athlete too!

I've always done sports, and most recently, running. I got a pulse-ox online for ~$30, compared it to the readings I got at clinic, and started checking my sats during the day. It opened my eyes! When I came up the stairs, it was dropping from my baseline of 93% to the low 80's! I got an rx for O2 with exercise. It cured the breathlessness and panic.

I take inhaled levalbuterol 4x/day and I always do that neb before exercise. Can you talk to her doc about doing a preventative dose of an inhaler?

Hope this helps! Tell your daughter good luck/good job!
 
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TreasureGoddess

Member
I'd say talk with your CF docs for sure, then have her do nebulizers and/or vest treatment before the cheering. My son can make it through his basketball practice MUCH EASIER if he's prepared with a vest treatment and levalbuteral inhaler then pulmozyme nebulizer about 30 mins before practice begins.

Ask your docs about oxygen tank too.
good luck! It's important to cheer, but also to be able to BREATHE and not do more damage than she needs to, so involve your cf team in ideas/treatments/decisions.
 
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nashjp

New member
Suggestion

This sounds like a question for your care team if you have not already asked. Your care team should be informed of this challenge your daughter is having.

swatterson said:
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...
Click to expand...
 
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CrisDopher

New member
While I agree with the comments regarding pre-routine albuterol (by nebulizer may be more effective than by inhaler) and getting O2, I want to point out that she can't be wearing the O2 during the routines - when she needs it the most. Sure, it's "only" 2.5 minutes - but how many times in a rehearsal? How often do you have to desat into the 70's for "only" a couple minutes before you risk heart damage? I don't know, but these questions need to be asked. I think a pro-active first step is to borrow a SpO2 meter from your CF clinic that can record readings over time and see what's happening during a rehearsal and during these routines. (Nonin makes a wrist-wearable oximeter with finger probe.) Knowing what's actually happening will be a powerful tool in making the right decisions about albuterol and oxygen use before, during, &/or after. Good luck and please keep us posted.
 
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swatterson

New 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.
 
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swatterson

New member
This is a good thought for me to consider! She practices - 3 x per week, about 2 hrs a practice but there is a lot of down time and only walking through the routine, not "full out." Maybe 3-5 times a practice they may go full out but they don't expect her to if she is having difficulty breathing that day- ie she has a cold. Even in rehersals prior to the actual competition they don't go full but just mark it.
 
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2roses

New member
Obviously you will be working with your cf specialist on any decisions ....
My teenage DD has exercise induced asthma (w her cf) and benefits greatly from an albuterol or xoponex neb immediately prior to exercise/sports. An inhaler never works for her (even w/ spacer). Someone here suggested buying a pulsox monitor, which I think is a great idea so u really know if she needs o2 when this happens. I personally wld avoid o2 unless absolutely medically necessary, partly due to your DD having to be the sick kid on o2 in addition to all the practicals of having the tank, explaining it all, etc when the kids just want to do what their peers are doing. That's tough for a 16yo having to 'go there.' I suggest also talking to ur doc about atrovent, which is a 'back door' bronchodilator that can augment the 'front door' albuterol/xop prior to cheering. Idk if ventolin accomplishes that.

Sounds like she's having a blast cheering and I wish you the best as you work out a solution. Exercise/activity is so important!
 
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Melissa75

Administrator
I hope you can resolve this for your daughter. I bet she gets so much joy and health out of participating in this sport. Beware of getting messed up readings on oximeters if your daughter is bouncing and flying around. I'm not sure if the one recommended above is able to handle a lot of movement, but others are not. You have to do all your crazy movement, and then pause to get a reading while still, which can still be useful.

I can sympathize a bit with your daughter, though I don't think to the severity. I used to take a dance class that involved learning some fast choreography (not hard to breath as you're learning pieces and and building on counts of eight). But then we'd take turns "performing" it at the end of class several times in a row. I was often out of breath in a way that scared me after my group's turn and I'd have to skip turns.
 
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Printer

Active member
As someone who was a competive swimmer, a lifeguard on an Atlantic Ocean beach for 5 years, (Commonwealth of Massachusetts) and someone who played college varsity basketball (but not well) and as someone with CF (not a parent) I believe I come to this thread with some level of expertise.

If EVER I could only function at any of the above for ONLY 2.5 minutes, I WOULD HAVE CONSIDERED IT LIFE THREATING. I would have shut it down.

You posted and you asked for SUGGESTIONS. I made my SUGGESTION, sorry that you don't approve. You may not believe it but BREATHING was equally important 56 years ago when I was 16.

Bill
 
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Printer

Active member
swatterson:

Overnight, I considered what you said about my being out of date and you are correct. Growing up in a family of 4 kids and an intergrated neighborhood things were different. What I wanted to do was pretty far down on my parents list (and my friends parent's list as well). Their first consideration was it a HEALTHY, beneficial activity. What would the negative effects be (breathing)? Would it have a negative effect on school work. Would the activity keep me from the daily family dinner. Would the cost have a negative effect on the family budget.

If my proposed activity could not meet ALL of the above critiria, It would be a "no go" no matter how much "I loved it".

I had a sister who had ear surgery. The Doctor told my Mother that my sister could never swim. She never did. It was not open for discussion, begging, crying or anything else.

So you see, you are right, I grew up in a time that was much different that the enviroment in which your DD is growing up in and I am out of date.

Bill
 
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Melissa75

Administrator
Why jump to shutting down and walking away from an activity when it still hasn't been determined with data and the advice of medical professionals whether this shortness of breath is dangerous. Nor have possible solutions such as an albuterol neb and oxygen been tested. Sprinting sports make people with fantastic lungs extremely out of breath. I don't think this is a situation people can judge from the outside and without medical expertise. Posting the question here is valuable, though, because it is possible that others have had similar situations and can share their experiences. No one would say, "copy that person's doctor's advice," but information is useful nonetheless.
 
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Beccamom

New member
My daughter now 13 had a similar issue with her gymnastics routine. At the time her FEV1 was 50%, but at clinic her pulsox was around 97%. I did buy a portible pulsox machine and her O2 stayed 95%. For my daughter albuterol and Xopenex did not help in inhaler or neb form. Duoneb which is albuterol and atrovent helped a little.

In the end we found out my daughter's Cortisol was bearly measurable and this "flight or fight" hormone caused severe exhaustion which exhausted all muscles including respiratory muscles. If your daughter has been on a lot of Pregnisone or even just long term inhailed steroids such as Flovent etc., then maybe her Cortisol is low. It took a year off all steroids to get her Cortisol up and her energy back and FEV1 up to 90s gained 10 pounds grew and she is a whole new person. My daughter had been incorrectly diagnosed with asthma which led to 12 years of incorrect treatment followed by CF treatment and she is doing incredible now.
 
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Printer

Active member
Melissa:

If you read my first post, I said two things. Stop the activity, Call the CF Doctor. I never said stop forever. I doubt thet the Doctor is aware of the 2.5 minute limit.

Bill
 
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Printer

Active member
Melissa:

If you read my first post, I said two things. Stop the activity, Call the CF Doctor. I never said stop forever. I doubt that the Doctor is aware of the 2.5 minute limit. It is like they teach in first aid, stop the bleeding and transport to a hospital.


Bill
 
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CrisDopher

New member
swatterson said:
This is a good thought for me to consider! She practices - 3 x per week, about 2 hrs a practice but there is a lot of down time and only walking through the routine, not "full out." Maybe 3-5 times a practice they may go full out but they don't expect her to if she is having difficulty breathing that day- ie she has a cold. Even in rehersals prior to the actual competition they don't go full but just mark it.
Click to expand...

Have you witnessed this yourself, or is that just what she's telling you, so you won't worry so much. I was a teenager myself once, and I know how they think!
 
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JennyCoulon

New member
My son was having trouble with this and coughing while playing soccer and they have him do his albuterol puffer with a chamber 15 mins. before exercise. They also put him on Advair that he does twice a day after his albuterol neb. treatment, vest and Pulmozyme. It took the dr's. a while to figure out how to solve this problem so he could continue to play sports and be active. Good luck
 
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Printer

Active member
Jenny:

When coughing and "this" happened to your son, did they have to carry him off of the field? Was he limited to running for only 2.5 minutes (150 seconds)? Was he in a situation whereby he would exhale and be unable to inhale? Were his lungs deprived of oxygen (and thereby his heart also) even for a few seconds?

I am suprised that so many Moms are blowing this off.

Bill
 
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