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I’m a mom of 3 boys. The oldest is 13 and was diagnosed with severe, mostly-exercise-induced asthma a year ago after having several attacks during soccer games and practices. Right from the start, both his pediatrician and his pulmonologist felt that his description of his attacks sounded a bit like VCD (Vocal Cord Dysfunction), which is often mistaken for asthma. We settled on an asthma diagnosis last year, however we are re-examining it this year, and I’m blogging our journey….
June 18, 2007 at 3:05 pm |
I just stared reading your blog on your journey through this condition with your son…after you noted my <i>houseblog</i> where I mention my 3yo daughter’s recent diagnosis. That was just the tips of the icebergs, and of you wish to read anymore of her story I encourage you to see <i>her</i> webpage at carepages.com. It requires you to open an account before you can look anyone up. Once opened, you can look up my daughter’s name (Deleted at poster’s request for privacy reasons)
I wish you all the best.
June 18, 2007 at 6:07 pm |
Thanks for your invitation to read your daughter’s care pages. I’m keeping her in my thoughts and prayers. Hopefully once you get her out of the hospital, her VCD will resolve itself!
July 8, 2007 at 1:56 am |
I found your blog while attempted research about a problem my daughter is having while playing soccer. She is 17 and has been playing since she was 7. She has always been very fast and aggressive. Last yr. it became noticeable that she was having difficulty running and was falling a lot. After a few weeks she had difficulty breathing and said it felt like her throat was closing up. She also got extremely piercing headaches where she’d have to be taken out. These bouts happened mostly during games where it was hot outside. Recently, she has been playing at a higher, more competitive level and she doesn’t seem to be able to play for more than 15 minutes before she has to be taken out because she can’t breathe and her performance shows it. she has taken inhalers which do not seem to help. Her teammates are frustrated with her thinking she isn’t in shape. She trains every other day. THis only happens during soccer games. Any suggestions?
July 8, 2007 at 3:15 am |
Deb, it does sound like your daughter has symptoms consistent with VCD, but it also sounds like there may (also?) be something else going on. I haven’t found any reference to falling or piercing headaches associated with VCD. I’d suggest a neurology consult for that. (I think you realize that I’m not a doctor or an expert, but just another mom a few steps ahead of you on this journey.)
A pulmonologist can help diagnose your daughter’s VCD. Be sure to mention the following facts, which I think point to VCD:
1) Your daughter says it feels like her throat is closing up. That is a big indicator for VCD versus asthma.
2) It only happens during games, and your daughter has recently moved up to a higher level.
You’ve probably read that exercised-induced VCD is most common in highly competitive female athletes about your daughter’s age, so your daughter definitely seems to fit the profile. Soccer is one of the sports I keep seeing come up as a trigger as well.
If the pulmonologist agrees with our guess that it may be VCD, they should refer her to a speech therapist to teach her breathing and relaxation techniques. In the meantime, read through the blog for information on the techniques my son learned. The most useful posts, imo are May 29, 2007 — Speech Therapist Visit and It Works! It Works! It Works!!! She should try to think about whether she tenses up when she runs — does she bring her shoulders up to her ears and clench her fists? If so, she needs to try to learn to run in a more relaxed style. She should also try to avoid eating and drinking a lot right before a game (if her schedule is anything like my son’s, I know this is a challenge!). We were told to have him try to avoid eating in the 2 hours before a game, because gastro-esophageal reflux can trigger a VCD attack (even though he didn’t feel he was having and GERD symptoms). Also make sure she’s well-hydrated before the game, but again, do most of the drinking a couple of hours before the game so the liquid is not all sloshing around in there while she’s running around.
Good luck!
July 8, 2007 at 12:08 pm |
Thanks so much. I will have her read this blog. As I said this happens mostly during any game when it is hot. During games with average weather, she seems fine. When I asked her, she says she can “control” it better. Getting her to admit there may be a problem seems to be the biggest obstacle. I believe its getting all mixed up in how she feels about herself as a soccer player not to mention this is the time many college coaches have been out to games. I will have her read your suggestions on breathing techniques. We are going to take her to the doctor this month. She has had a scope(don’t know which one) and they say that everything looks okay. so?? Another thing about our daughter is that she sweats profusely from her hands and feet. We’ve taken her to the dr. on that but the treatment would be steroids which at this point he doesn’t feel she should take. As far as the headaches it seems to be again during only hot months and when she has her period. She has had a scan of her head and everything is fine there too. Its very frustrating. Thanks for your site. I will let you know how we make out. debv
July 9, 2007 at 1:46 pm |
Interesting about the heat element. There is a psychological component to VCD as well, so a correlation that may have been random at first may become a self-fulfilling prophecy. My son mostly has trouble in games where they are short players and he knows he will have to play the whole game. Just knowing that, he will run into problems earlier in the game than he would have otherwise.
As to the scope, it is hard to diagnose VCD via scope unless they can make her have an attack in the office. (If they can be looking at the vocal cords during an attack, that is a gold standard diagnosis.) For my son, the diagnosis was based on his description of his symptoms, the fact that the asthma inhalers didn’t help much (they always seemed to help a bit at first, which was deceiving), and (eventually) the fact that the breathing exercises worked for him. Some people with VCD show a slight “clipping” of the inspiratory loop on their pulmonary function tests. This was the case for my son. It can be one more clue. But other people show completely normal PFTs when they are not symptomatic.
In my experience with my son, he was skeptical at first about the “diagnosis” of VCD, especially when the breathing techniques didn’t work for him first time out. Once he realized how well his symptoms fit the mold and was willing to give it an honest attempt a few times, it started working quite quickly. I think, because of the psychological component in VCD, that they have to believe the breathing will (or at least might) help before they can really “let” it help them.
(As a mom, I was also really scared of this diagnosis at first, but now both my son and I are quite pleased about how easy it is to deal with, without all the drugs he was on for “asthma”. And the long-term outcomes are excellent.)
The headaches sound really unpleasant. I don’t really know much about them but if they happen during her period, they may be migraines. You could ask the doctor about giving her some ibuprofen before the game to see if that prevents it. Also hydration. My son also gets migraines, though not during soccer games. He did get them a lot during skiing and we thought it might be the change in altitude, but his neurologist thought it was more likely dehydration since you don’t stop to get a drink while you’re out on the slopes. Same thing for soccer, which is very bad in terms of hydration once the game is on. The best defense there is drinking a lot in the hours before the game.
Good luck and let me know how things go!
October 17, 2007 at 6:25 pm |
I am so glad to find your blog. I have been searching for some time to find someone who can relate to my situation. PVFMD has turned my life up side down. I had to leave work and am on disability. Thanks for putting yourself out there. I am not a high school athelete, but a 30 plus woman. I have have been plagued by my “cough” for a year and a half now and am continuing to cope with and manage this condition.
July 16, 2008 at 8:34 pm |
Thank you, thank you, thank you. My 14 year old daughter who plays competitive soccer was just given this diagnosis last week. I can tell she is also skeptical about how on earth breathing techniques can help her when she feels like she’s having an asthma attack. We’ve been referred to a speech therapist, but also told it will probably take a long time to get in to see her, so for the time being, we’re on our own with just a written description of some breathing exercises. I’m going to bookmark this and have her read it when she comes home tonight!
September 9, 2008 at 7:11 pm |
I’m wondering if you can tell me if your son has ever complained about a severe tickle/itching in the back of his throat that triggers a very severe, uncontrollable coughing attack? I have had this problem for over 20 years (!), since about age 20, and no one has been able to tell me what the cause is. Have had all the allergy, asthma, reflux, etc. tests and treatments generally associated with chronic cough and nothing has worked. I am a non-smoker with a healthy life-style and except for this pretty debilitating cough, am a healthy person. I just read about PVFMD and it seems like the symptoms match mine pretty closely. The information I have seen mentions a chronic cough, but not whether it is accompanied by that annoying tickle. Also, do you know if this is a hereditary condition? My parents have told me that my grandfather did the same thing. Thank you so much for any information you can give me
September 9, 2008 at 7:16 pm |
Deb,
No, my son does not have the coughing fits, so I don’t know much about that symptom. I also don’t know if this is a hereditary condition or not. I have not heard of a familial link, but there may be a weak one. Good luck in your quest for answers!
September 9, 2008 at 7:33 pm |
Well, I’m sure there’s at least one weak link! Thanks so much for your reply, I’ll keep looking!