Hi they are testing my 10 yr old daughter

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myangels
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/27/2007 10:44 PM (GMT -7)   
Hi my daughter was a premmie ( 3 pounds) and has always had lung problems. mostly in the winter. she gets really bad coughs ( they said it was asthma) it would last for weeks at a time and many Er visits. she is on the breathing treatments at home but it dont seem to help her cough. (steroids do at times) she is on singlar and a few other meds as well. ( allergie and asthma meds . i dont have the list in front of me ) but in the winter nothing seems to help.
 
She is also a picky eatter but not to bad. but a few times a week she will complain of a belly ache.
 
She complains of her legs hurting very often in the summer ( the bottom of her feet) but i don't see any club feet.
 
I started researching family hystory and tonight found my lost brother ( well i found his mother *same dads diffrent mothers*)
 
I told her who i was and asked if i could ask some medical questions about my brother as my "dad" is no help and we  have never met.
 
she said sure and was very helpful. I asked if Cystic Fibrosis ran on my dads side of the family and she got real quiet. I asked again and she said my brothers 10 year old daughter has it and my aunt ( dads sister) passed away from it.  but she did say my neice has no lung problems more belly and problems with her legs.
 
Now i dont know much about Cystic Fibrosis but i am now clearly worried. I keep saying well it must just be Asthma that's hard to control in the winter. I read that their sweat will taste salty and ive never noticed this with my daughter. ( i've found myself kissing her forhead the last two days to make sure) she has been ill throwing up and sore throat in the last two days ( i think its a bug)
 
 
since her sweat does not taste salty and her lung problems are mostly in the winter ( thats a good sign its not Cystic Fibrosis right?) i mean it would effect her all year not just the winter right?
 
She does have allergies also. and gets the dark eyes.
 
 
I keep thinking the Dr is just being safe and that its just asthma and allergies.  I read online that kids will often complain about belly aches ( when i ask what it feels like she just says it hurts) and I thought her leg cramps was just growing pains although she has been having them for a few years.
 
she goes to one of the best lung dr's and Cystic Fibrosis Dr's in the state Tuesday but until then I cant seem to stop researching.
 
 

myangels
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/27/2007 10:50 PM (GMT -7)   
i should add that Tuesday she is having a sweat test and a lung compasity(spelling) test

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 10/28/2007 2:10 PM (GMT -7)   
Hi there, and welcome too healing well.

The last thing I want to do is give you false hope that this isn't the case for your daughter, as it would be much more of shock for you if the tests came back positive. I am going to try to be honest as possible, and hope it doesn't get you more worried. I must remind you I am not a professional, and only know what I know through my experiance of having CF myself, and knowing other patients with CF or asthma.

In my experiance, the only person with CF that I know with leg problems is me. My leg problems aren't CF related, although still undiagnosed as a muscle condition. I have heard of people having achey legs though, because of lack of activity due to breathlessness or tiredness.

With regards too the winter thing- CF patients vary, some people find summer harder, some find winter harder. I personally find although it's harder to breath in cold air, less bugs grow. I need a lot more treatment in Summer, as that's when chest infections occur most for me.
Some people who aren't as sensetive to the same bugs as me, find the winter weather a lot tougher too deal with.
A lot of people find fast alterations in weather the worst, as your body doesn't get a chance to adjust before the weather changes again.

Having CF, one thing I find is that if I'm warm my lips start to taste salty, if I haven't eaten in a while. My palms for me are my hottest place, and sweat most. My palm and fingers always taste really salty, especially my thumbs. My brother who also has CF though, doesn't lose as much salt as me, and never notices his salty skin like I do.

The sweat test is a good indicator of CF. A blood test to test for the gene is also a good step to take.
The lung capacity test in my opinion is not the best indicator. Here's the reason why-Up until age 18, my lung function was at 113%, 13% above what is average for my age, sex and height. Even now it's at 87%, which is still incredibly good and only 3% below my physiotherapists. I get really affected by bugs, and have needed IV antibiotics at least every 2 months for the last year. Some people have lung function of 40%, but don't need IV's so regular.
My friends girlfriend has severe asthma, and has really low lung function, and always has, and is in hospital with chest infections more often than me.

I hope some of this helps. It is unfortunately a waiting game, until results come back to tell you for sure. CF has so many different things it effects, and every person with the condition is different, that noone can ever tell for sure until tests are done. I'm glad you have a good lung doctor though, that you feel you can trust, that is the best way to start. I hope the wait isn't too long.
Gem


Co-moderator in the: Cystic Fibrosis Forums
 
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05

Post Edited (Darkies Gem) : 10/28/2007 3:37:47 PM (GMT-6)


myangels
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/31/2007 7:36 AM (GMT -7)   
Hi I got the results back and it was 65. they said that is normal? I read its not?she does have blockage on right side of one of her lungs and is now on more meds( i think 7 total)

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 10/31/2007 12:09 PM (GMT -7)   
Hiya!
 
The way lung function is tested, is that a bunch of people with different age, heights and genders were tested for there lung function. The results were all added up for each catogary. 100% is the average from the test of people. Considering your daughter has a blockage in her lung, then I guess the lung function amount could be seen as normal. Once that blockage is removed, it will be a better reading, as your daughter will be able to get more air into her lungs. As I said in my previous post, it's not the most accurate. I see it more of a test that can measure your lungs too make sure they aren't geting worse.
 
There are a lot of things that can cause blockages. ABPA, is something I have, which is basically an allergy to a certain fungus called aspergillus. This causes 'plugs' of mucus too form in the airways. It could just be a bacterial infection. As asthmatics and 'normal' people get those too. There are a couple of infections which are quite specific to CF lungs. But, these infections can be picked up very easily when swimming or horse riding or even pet bedding. And, can be caught by anyone with a low immune system really.
 
It's still the waiting game unfortunately, are the sweat test results back yet, if not, did they give you an estimated time with how long you'll have to wait?


Co-moderator in the: Cystic Fibrosis Forums
 
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05

Post Edited (Darkies Gem) : 10/31/2007 1:13:14 PM (GMT-6)


myangels
New Member


Date Joined Oct 2007
Total Posts : 4
   Posted 10/31/2007 12:11 PM (GMT -7)   
HI the sweat test came back yesterday ( we waited for it) it came back at 65 he says thats normal but i read other wise?

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 10/31/2007 12:18 PM (GMT -7)   
Hiya again,

thought that figure was lung function not sweat test, sorry!

For the sweat test- under 40 is normal, 40-60 is a boundary/grey area, over 60 is almost certain. Did you question your doctor as to why he thought that 65 was a normal figure? I've recently done quite a bit of looking up with regards too the sweat test, as I didn't know much about it, and each website I looked on, came back saying these figures.


Co-moderator in the: Cystic Fibrosis Forums
 
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05

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