Could this be true?

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mickey-09
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/1/2009 2:56 PM (GMT -7)   
        Hi,
 
    My 15 year old daughter is kind of overweight but also tall. She has shown alot of symptoms of Cystic fibrosis. I know some children with this disease and they are very skinny and shorter. Is it possible that my daugether could have Cystic fibrosis even if she is a little overweight?                 
                                                                                                                                                      Thanks!

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/2/2009 3:47 AM (GMT -7)   
It is possible.

People with CF can be pancreatic sufficient (meaning they can digest food) depending which genetic mutation they have.
I personally am pancreatic insufficient (meaning I can't digest food), and currently slightly overweight with a BMI of 26. You should check your daughter into see a doctor, and explain your concerns to be on the safe side. That way, tests can be done.

Oh, the only other big visible symptom I can think of, is chest infections and breathing difficulties. It is possible, it could just be asthma. What other symptoms does your daughter show, if you don't mind me asking.
Either way, you should go see a doctor.

Good luck
Gem


Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


mickey-09
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/2/2009 4:41 AM (GMT -7)   
Thanks,
 
      When she was a baby she ALWAYS had alot of bowell problems and they diagnosed her with IBS also she caught lung infections numerous times and had been hospitalized because of it. She always had a 'rattly' or 'mucusy' cofh but lately I find its been getting ALOT worst. Shes always been fairly active. Shes always been 'bigger' but she is fairly fit She plays alot of All star Ice hockey and Soccer but lately when she pertisipates in any physical activity she has trouble breathing and has cofhing and wezzing fits sometimes cofhing up mucus and she will also become VERY tired which is very unusual because in her previous years is was impossable to wear her energy off. Her sinus I took notice to is always blocked off and shhas a stuffy nose an awful lot and I'v also noticed she catchs the flu quit often.  She doesn't have an appitite anymore and gets full fairly quick. Now she doesn't have as many bowell problems as she did when she was a baby but uses the bathroom an awful lot. I'm not quit sure if thats a symptom or not. But if you could help any bit at all it would be perfict! Thanks.

mickey-09
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/2/2009 4:56 AM (GMT -7)   
She also finds that theres always something there in the bottem of her throat and her chest.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/2/2009 1:20 PM (GMT -7)   
Ok, I'll try and answer best I can.

Asthma CAN also present similar chest symptoms too CF. A friend of a friend of a friend had really bad asthma, she was in hospital more often than us for IV antibiotics. The throat thing, I get with CF but again, it's soemthing that can just happen if you get infections a lot.

Another symptom of CF, is salty skin, especially now it's getting hotter. I'm like a human salt lick right now, all my arms and legs. My face is actually burning with salt. Not everyone with CF gets salty skin too this extent however it is a big telltale sign.

The bowel thing I can't really advise on, as I'm not sure what other conditions might stop you digesting food in the way CF does.

It is definately worth getting your daughter tested, and either way, you need to consult a doctor, so they can control the symptoms your daughter is experiancing and make life a bit better for her.

Any questions you think of, do ask. I'm not a doc, or even a professional. I am however experianced in my own condition, and know a bit about how CF effects my brother and friends.

Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


mickey-09
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/5/2009 6:58 PM (GMT -7)   
Hey Darkies Gem,

Well, I had my girlie tested a few days ago and she does have Cystic Fibrosis. She was pancreatic sufficient for most of her life and was digesting food and gaining weight plus even more with alot of anxitity but somewhere in her teen years she turned pancreatic insufficient. Lately she lost ALOT of weight without trying and ALWAYS had bad stomach pain. I guess this past year or more she devolped it.

Her lung functions are down, diffently not 100% and their damaged. The CF started off 'mild' but it most diffently to get worse, espectally with no treatment for 15 years. Like, she was always, always sick these past couple years but even more this year. This year
she missed so much school because of a massive belly pain, Chest infection or jsut a cold. The colds were always to the point she couldn't go to school it was just insaine because my other two children never had any respatory problems with a cold as she did. I thought the belly pains were probably period cramps most of the time, but I guess it was because she wasn't really digesting her food. A few weeks ago I really got thinking on why this was always happening to her and why she felt so crappy and I thought of this. I'm glad I followed my own instincts and got her checked for CF.

She doesn't like all the pills and doing the physio, even though we only found out today. She wont take the pills unless I make her. And I'm still nagging on her to do the physio for the second time today.

donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 7/6/2009 12:47 AM (GMT -7)   
Motherhood can give some of us the gift of knowing something is wrong with our children. I am so glad that you listened to your gut and your daughter. I hope I have a child who became ill in her teens, not from CF, and it was a life changing experience for our family.

It is wonderful that your daughter can be treated and is able to live a full life, despite CF. Nowadays people with CF get to do things and have goals. years ago that was not the case.

Take care,
Donnaeil

kim27
New Member


Date Joined Jul 2007
Total Posts : 16
   Posted 7/15/2009 3:48 PM (GMT -7)   
Hi Mickey,

I felt I had to reply here as reading your post about your daughter was like reading about myself as a child! I am now 29 and only 2 weeks ago was diagnosed with CF. It was a big shock. I knew I had bronchietasis, but not CF. I also have Crohn's which I was only diagnosed 3 years ago but had all my life. It is more common now that adults and teenagers are being diagnosed later with CF. Once your daughter gets into a routine she will feel much better taking her meds and doing physio. It's a pain in the butt, however in time she will know how it can help her quality of life.

Good luck :-)

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 7/16/2009 5:09 AM (GMT -7)   
Kim,

I completely agree with you. I was diagnosed at 2 years old, but didn't start taking my meds properly until about aged 19. I'm now 23. Even now I struggle if someone isn't reminding me, and get annoyed if someone gets on my case too much. There're just so many pills and treatments to do, it gets boring and tiring. I guess it must be even worse if you've just been diagnosed and have all the crap that comes with CF thrown on you all at once.

I know how important the medication is, and your daughter talking all the meds prescribed is very important right now, so the right doses can be figured out for everything, and how many times a day she actually needs to do physio, if she is productive with it or not, and also what type of physio is the best for her, as there are many different types and devices that you can use.

I never know what to say when people aren't taking their meds, as I know how it feels from both ends. I have a brother with CF, I'm always nagging at him, as he takes nothing at all. Including enzymes, meaning he always has belly ache. But at the same time, I have to force down every pill, not because I don't want to be well, but because the meds make me feel sick and some of the repeat on me all day. My nebuliser makes me wheezy and tired. My physio just makes me sleepy, and as I've never had a highly productive chest, it just feels to be a waste of time.

Your daughter will learn though, that these meds and treatments will keep her alive and more well, than when not taking them. Until then, you're doing the right thing by putting pressure on to take her meds. I guess another thing you could do, is explain what each medication does, and why she needs too take it. I know knowledge eventually helped me start taking my meds.

Best of wishes to you and your family, and hopefully CFwill just become a normal part of everyday life soon.


Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 8/11/2009 10:27 PM (GMT -7)   

I agree! Getting settled into a routine is what's best for now.

I've known about my CF for almost 18 years, and I'm just now getting a good solid routine down after an eye-opening infection where my smaller airways were only functioning 10%. It was bad.

But about the weight thing, that is one issue I've never had. I'm 5'7 and I weigh about 135-140, which isn't too bad. When I got sick though, I dropped 15 pounds in just a week, and they wouldn't let me out of the hospital until I gained some back.


Em!!!
 
Ta ta for now!
 
"In solitude the mind gains strength and learns to depend on itself"


 

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