Discussions By Condition: I cannot get a diagnosis.

15 yr old with skipping heart & breathing problems!

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: michele135
  • December 2, 2008
  • 05:47 PM

dear all,
i have a 15 yr old daughter with some health problems and i'm very concerned.
she started having problems breathing a few months ago, at first it was very sporratic, but now it's happening all the time. she says that she feels like she can't get enough air, and that makes her constantly have to breathe deeply to compensate. sometimes it scares her that she just can't breathe.
she has also been getting chest pain on and off.
about 2 weeks ago she started complaining that it felt like her heart was skipping beats, like a fluttering in her chest. sometimes it happens once a day, and other times (like yesterday) it happens 5-6 times! it's starting to scare her a bit.
on days where she's at school, she comes home exhausted and can barely function. she ends up in bed by 7pm and seems to just feel really lousy. her breathing is also worse in the evening after a busy day.
at this time, she also seems to get really cold.

so far, the doctors have ruled out asthma, anxiety & hormone problems.
last week she had an ECHO and is currently on a loop monitor.

yesterday she was in a bad way, and i took her to the ER because she was just having a really hard time with the chest pain and breathing.
she had a slurry of blood work done, chest x-ray & ekg. the ER doctor told us that there is nothing wrong with her heart and to just go home.

it will be several weeks before we could get the results of the loop monitor and ECHO, and in the meantime i am worried sick about her. she is just not functioning well and it just seems to be getting worse, not better. the episodes and just mmore frequent and are starting to scare her.

i am wondering if i'm right in thinking it's a heart issue? why do we keep getting told that there is nothing wrong with her?
is there an underlying condition of the heart that just doesn't show up on standard tests? if so, what should we be looking for?

she has been sick her whole life, and i feel as though i have to fight for everything with her.

if you can help, i would greatly appreciate it.

signed,
a very worried mom

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5 Replies:

  • Did they test her thyroid function? Try here: http://xnet.kp.org/permanentejournal/sum08/cardiomyopathy.html Mitral valve prolapse comes to mind. Try here: http://books.google.com/books?id=er8dQPxgcz0C&pg=PT360&lpg=PT360&dq=adolescent+dyspnea+palpitations&source=bl&ots=UX0ZP54CBq&sig=6IocAI3d0Wm978ITvQWXAgmXTH8&hl=en&sa=X&oi=book_result&resnum=2&ct=result#PPT359,M1 There are more serious things too, but I'd wait until you have the results of the monitor before you worry about them. Sorry you're having scary times.
    aquila 1263 Replies
    • December 2, 2008
    • 08:59 PM
    • 0
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  • on days where she's at school, she comes home exhausted and can barely function. she ends up in bed by 7pm and seems to just feel really lousy. her breathing is also worse in the evening after a busy day.at this time, she also seems to get really cold. That is all symptomatic of chronic fatigue immunity dysfunction syndrome (CFIDS) also known as Chronic fatigue syndrome.. With CFIDS when one overdoes things (pushes one past ones limits), it isnt uncommon for the body temp to go and drop eg one then feels cold or for it to go the other way and one goes into a mild fever. If you take her temp at such times.. you may notice a change in temp. from her normal temp. she says that she feels like she can't get enough air, and that makes her constantly have to breathe deeply to compensate. In CFIDS groups we call this symptom "air hunger". It is a horrid symptom. I equate it to feeling like im suffocating.. like my very cells cant take in enough air .. like your daughter I do deep breathing to try to compensate (but it really dont help all that much except to stop myself from panicing a bit due to not being able to breath well). Ive been suggested (I have CFIDS) to go down to the hospital and try oxygen if I get this symptom again (I had that symptom real bad, a couple of years ago when I over did things on christmas day). I dont know if oxygen would help or not with that symptom. about 2 weeks ago she started complaining that it felt like her heart was skipping beats, like a fluttering in her chest. arrhythmias (heart missing beats) and palpitations or Tachycardia (when the heart beats fast) can all occur in CFIDS. I had exactly the same heart symptoms last year (in my case due to CFIDS) and was sent to heart clinic to have a lot of different heart tests done.. all my heart tests came out normal (as I didnt have any incidents of it while I was having the testing done). I wasnt getting that symptom thou as much as your daughter is... so my 24 hr monitoring came out normal too. I think you need to make sure she has 24 hr monitoring done.... and an exercise stress test done too.Sometimes this kind of heart issue isnt picked up unless one is having an epsoside while the test is being done................ her symptoms suggest a possible heart issue (as that will cause exhaustion too) .. or something like CFIDS. I are not sure if she has CFIDS thou as you didnt mention enough symptoms for it to be that (so in that case.. maybe heart issue) .... (but im assuming she may have other symptoms you havent mentioned...which would help to confirm the CFIDS). Take care if it is CFIDS as deaths "have been known" to happen from "over doing things".. recently a MP dropped dead in England (His heart stopped) after he got put into a graded exercise therapy (GET) program for CFIDS. (In England they are like behind times and still many are treating CFIDS as like a psychological problem or as if it's physical unconditioning which is causing the issue..which isnt the case. There are very real issues going on within the body to which too much exercise may make worst). CFIDS is a neurological illness which can affects most parts of the body). I suggest for you to contact your CFS/ME/CFIDS association and ask for recommendations of doctors who specialise in this to rule it in or out for your daughter. The CDC (in America) say that 80-90% of CFS cases are sick and undiagnosed... This is cause most doctors dont know enough about this illness and arent up to date with it.. to feel comfortable diagnosing it.
    taniaaust1 2267 Replies
    • December 5, 2008
    • 02:17 AM
    • 0
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  • try researching POTS syndrome, or dysautonomiagood luckpam
    pamelasmc 82 Replies
    • December 7, 2008
    • 02:50 AM
    • 0
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  • i have the same problem with my 15 yr old daughter. what was your final result with her?
    Anonymous 42789 Replies
    • October 15, 2009
    • 00:07 PM
    • 0
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  • dear all,i have a 15 yr old daughter with some health problems and i'm very concerned.she started having problems breathing a few months ago, at first it was very sporratic, but now it's happening all the time. she says that she feels like she can't get enough air, and that makes her constantly have to breathe deeply to compensate. sometimes it scares her that she just can't breathe.she has also been getting chest pain on and off.about 2 weeks ago she started complaining that it felt like her heart was skipping beats, like a fluttering in her chest. sometimes it happens once a day, and other times (like yesterday) it happens 5-6 times! it's starting to scare her a bit.on days where she's at school, she comes home exhausted and can barely function. she ends up in bed by 7pm and seems to just feel really lousy. her breathing is also worse in the evening after a busy day.at this time, she also seems to get really cold. so far, the doctors have ruled out asthma, anxiety & hormone problems.last week she had an ECHO and is currently on a loop monitor. yesterday she was in a bad way, and i took her to the ER because she was just having a really hard time with the chest pain and breathing.she had a slurry of blood work done, chest x-ray & ekg. the ER doctor told us that there is nothing wrong with her heart and to just go home. it will be several weeks before we could get the results of the loop monitor and ECHO, and in the meantime i am worried sick about her. she is just not functioning well and it just seems to be getting worse, not better. the episodes and just mmore frequent and are starting to scare her. i am wondering if i'm right in thinking it's a heart issue? why do we keep getting told that there is nothing wrong with her?is there an underlying condition of the heart that just doesn't show up on standard tests? if so, what should we be looking for? she has been sick her whole life, and i feel as though i have to fight for everything with her. if you can help, i would greatly appreciate it. signed,a very worried momStart with the simplest things first. Does she drink enough water? She should drink at least one pint 30 minutes before all meals. I fear that at her age she may be cronically constipated. It is often an overlooked situation that the pressure and the heart palpitations begin with a sluggest bowel. I would suggest enemas and mild laxatives until she is having a least 2 full bowel movements daily. Nothing less! Feed her fresh fruits and nuts and salads and have her take Probiotics 15 minutes before the meals at home. Liquid Probiotics from the Health Food Store will be the best.I believe that all of the above will help her quickly within a week or so.... best of luck to you.Dr. John
    Anonymous 42789 Replies
    • October 16, 2009
    • 05:22 PM
    • 0
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