Suspecting CF in my 12 year old son

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Mom212
New Member


Date Joined Jun 2003
Total Posts : 6
   Posted 11/12/2009 3:09 PM (GMT -7)   
  My son, age 12 has had allergies, asthma,eczema and slow weight gain,GI symptoms, etc. his whole life. He was adopted as an infant and we have no bio information.  He was diagnosed with an eosinaphilic disorder this last year.  This is where food allergies cause inflamation in the esophagus and intestines with damage from an overabundance of eosinaphils. He is on a very limited diet for this.
He has always had issues with breathing and seems to always have a lot of mucus coming out of his sinus's and throat. He has a lot of nausea from the drainage. He was just treated with antibiotics for one month for a chronic sinus infection. At followup last week the ent said that the infection is cleared, yet he is still getting jugh amounts of mucus with the sinus washes, twice daily and coughing and wheezing with his asthma. He coughs up plugs of mucus several times daily. After getting it up his wheezing is better and he can sleep better.  He gets out of breath easy and has had to quit every sport he has tried because of this. We have been told that it is from the environmental allergies and asthma.
I am just suspecting more than that is going on.  He has had several rounds of steroid bursts this year. His asthma suddenly got worse in the last few months than it has ever been. Yet his peak flow readings do not increase that much with inhalers. His lung function tests have never been over 80% even with treatments. We have never had a good explanation for that.
I asked my allergist yesterday to order a test for CF. She has called it in and we will be going in for the blood test. Is the blood test as accurate as the sweat test? How long does it take to get test results?
Are we barking up the right tree? Can we trust the tests, positive or negative? I'm really afraid to even go in for this test! We need answers for the best treatment though.  I would love to hear from others that were diagnosed at an older age.  I thought this was something that was always caught at birth! I have read that is not the case. 
Thank you for any help or dvice you may have.
 

timboy
New Member


Date Joined Nov 2009
Total Posts : 18
   Posted 11/13/2009 3:50 PM (GMT -7)   
Diangnosed at 18. Had somewhat similar lung symptoms with no GI issues. They said I had asthma but couldn't explain the mucus. Overall my symptoms were a lot more mild that what you're describing in your son.

I would definitely suggest getting him tested. After starting therapy I realized how much easier of a time I would have had with sports, especially as a runner who was constantly out of breath. I felt like I could have much more easily handled those physical challenges with both therapy and prevention methods. Even if the results are negative, maybe think of starting chest pt (if you have any questions with that, I'm sure most of the members of this forum, myself included, could point you to answers) and trying to get him to increase his cardiovascular activity as much as he can tolerate. If symptoms persist, I would recommend genetic testing with specific testing for rarer mutations (P67L, rather than homozygous Delta 508s, for example) and, pending those, try to be as cautious as you can when dealing with possible lung/sinus infections.

Maybe he has some other immune-deficiency. Try practicing CF-like precautions when it comes to things like germs and smoke. If things seem to clear up, at least you know you're on the right track. And it won't cost you more than a few bottles of hand sanitizer and a few extra moments in your day here and there.

I hope this helps. Please don't hesitate to ask if you have any questions or confusion now or anytime along the road ahead.

Good luck.

Mom212
New Member


Date Joined Jun 2003
Total Posts : 6
   Posted 11/13/2009 8:14 PM (GMT -7)   
What does the mucus look like with Cystic Fibrosis? My son has some yellow, but mostly it is white and either thick cottage cheese like or else stringy. Excuse the grapics:)
Thank you so much for your response. We have him scheduled for both the sweat test and the blood test on Monday morning. I can not even brong myself to explain to him what we are testing for. I just told him that we were trying to find out why he is coughing up so much junk and having more trouble breathing lately. he has been through so much testing this year(5 endoscopies and a 6th scheduled in Dec.) plus this diet with no wheat,oat,rice,barley,dairy,egg,nuts, fish,sesame,pork,or turkey. Thankfully he CAN have beef,chicken,soy,corn and potato, along with fruits and vegtables. He is already doing so many meds, plus allergy shots. He is on zyrtec,allegra,periactin,nasonex,budesinide swallowed with splenda for the Eosinaphilic disorder,plus adhd and anxiety meds. Also now doing Advair and Albuteral inhalers several times daily. He is really fed up with it all and depressed that he is not improving.

timboy
New Member


Date Joined Nov 2009
Total Posts : 18
   Posted 11/14/2009 9:28 AM (GMT -7)   
Mucus color can vary, but usually the darker it is, the more likely something is in his lungs. I think it also depends on the individual. When I'm well it's usually no darker than a faint peach color and is more often white. Is his saliva thick? Some CFers experience that phenomenon, myself included.

I think if I was in your position, I would tell him what is going on. Tell him the name of the disease and how they test for it. The sweat test really isn't anything but time consuming -- maybe a bit uncomfortable at most. They're likely going to take a significant amount of blood, but it happens. Anway, I think I would tell him that it's just a test, and if it comes back positive he's the same person he was the day before, and everyday before that. Explain to him it's just an outlet for a possible answer to all his strife, and that the advice and treatments that comes with that answer might really make things better for him, if he's willing to accept that answer.

If the results are positive, make sure he knows it's not his fault -- it's a genetic disease, and if he has it, it's simply part of his genetic makeup. It's how he was created -- something he had not the slightest bit of control over -- but it's not a definition of who he is. If he's frustrated at his current health situation, not only could CF treatment make things better for him physically, but it might help his emotional anguish by showing him that his lack of improvement to date hasn't been his fault. CF, when undiagnosed, is an inexplicable detrimental element in day to day life. When it's brought into light, though, things can really change.

If he is diagnosed, it might be a tough pill to swallow -- especially for you as a mom. There is certainly nothing you did wrong (unless you're a smoker, in which case that will need to come to a stop IMMEDIATELY). You're going to have more questions than your brain can contain when you're speaking with the doctor, and the most obvious research tool when more come flooding into your head in the middle of the night is the internet. It has a lot of helpful stuff about CF, but you're going to see facts and figures that will, excuse my language, put you on your ass (that's the only way I can describe it). Be careful about what you absorb as fact. Just like every person is different, everyone with CF is different. He'll be even more different if he has a rarer mutation.

I wouldn't keep him from doing his own research, since it is his body and he deserves to know what it's up to. You could always look things up before him, though, and recommend sites that may not scare him as much. I would give him the same speal about everyone being different before even getting tested, and reinforcing the idea well after the results of the tests come back. Also, I would get him something to take his mind off of it. Maybe buy him a video game or, even better, something that involves more activity (new bike? roller blades? Even a guitar or something to spike his interest in some creative facet so his mind doesn't stagnate on the diagnosis/waiting on results.) It sounds materialistic, but I think it's both realistic and reasonable, especially at 12.

This might be a lot more than you wanted, and I don't want to get your mind reeling about what your future could hold for your family if your son is diagnosed. If things do come down to that, though, at least you'll have an inkling of an idea about the process. Nobody is going to be happy about it, especially once your son hears about the daily therapy (if they demonstrate the vest, it's going to blow your mind, but it does work). If it hasn't sunk in yet, though, try remembering ignorance paired with CF is not a road down which you want to travel.

That is why we are here together on this forum. To share information. And we will be here to give help if you need it.

Try your best to have a good day. Rinse. Repeat.

Mom212
New Member


Date Joined Jun 2003
Total Posts : 6
   Posted 11/14/2009 9:59 AM (GMT -7)   
I really appreciate your taking the time to give me such helpful information. Based on how Andrew stress's over things, I am going to wait until after the testing to talk to him about CF. He would not sleep until the results are in if I told him. If the test is negative, it would be cruel I think to have caused him needless worry. If positive, we will then have the talk.
We do not smoke, but Andrew has an older sister that does. She was in from the army last month. She does not smoke around us or the children, but just the smell on her clothes bothers Andrew, especially if he is in the car with her.
We have a young lady with CF in our community that is waiting on a lung transplant right now. She has had a pretty severe case since an infant. Andrew doesn't know her personally though as she is now in her twenties and has moved to a major city while waiting for the transplant.
Thank you for all the ideas though. Andrew happens to play the guitar,rollarblade and loves his games! I usually do try to get him a new ds or psp game before a new procedure to give him something to occupy his mind before and after. It really does help. He will endure almost anything for a new game!
I'm sure I will be back here with many questions. Hopeing and praying that I am all wrong about this and tests are all negative. Regardless, I will come back and let you know the outcome. Take care and be healthy!
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