Sweat tests

[anonymous]

Hi there everyone, my name is Barb. I have a 12 year old daughter with severe refractory asthma. She produces very thick, clogging mucus that is very difficult for her to cough up. She has had multiple bouts of bronchitis and one pneumonia over the last year. Her sputum culturees show hemophilus and streptococcus - not really CF bugs. She's 5'7 and 140 pounds, so no weight problems there. She has had one sinus surgery done this year.

Going to the topic of this post, she has had two sweat tests - one came back at 13, the other at 32. She has been tested for everything else, including allergies. Should I push for another sweat test or even genetic testing? The pulmonologist doesnt seem to think it's CF, but is it normal to have such salty sweat without CF? There is no history of either asthma or CF in the family by the way. She was hospitalized about a month ago and had IV steroids with a dramatic improvement in her lung functions. The lung doc told us that was indicative of asthma, but what about CF? I'm very worried. Please reply. Thank you very much in advance.

-Barb

 

[NoDayButToday]

I'm pretty sure that a borderline sweat test (indicating a need for a retest) is a reading between 40-60. Sweat tests are not 'goof proof' and even though it seems your daughter doesn't have CF, a genetic test would lay any doubts in your mind to rest. Good luck

 

[anonymous]

Hi Barb,

I would have a genetic test done. There are some mutations that will give a normal or borderline sweat test value.

Tammy 43wcf

 

[anonymous]

I would request an ambry genetics test just to be "sure". Another thing, have they ever tested her for primary ciliary dyskinesia? Also known as immotile cilia? TO do that they have to take a biopsy of the cilia from at least two different places. They can do that during sinus surgery although it's not routine. They also can do it during a bronchoscopy. OUr son doesn't have cf but has very similiar problems as your dd. His first sinus surgery was at age 4 and he's needed a second one now for about a year (he's only 6). Our ENT doesn't routinely do the biopsy for pcd but wants to do one when he has his next sinus surgery. For now, we're just trying to hold off. PCD does have many similiar symptoms to cf but the cause is different. In the case of pcd, the problem is that the cilia doesn't work properly and as a result, the individual cannot clear the secretions from their airway, very similiar to cf. Treatments are also similiar - mucolytics, physiotherapy, frequent antibiotics, IVs, etc. Prognosis is better.

Also, I'd request an ambry genetics test. Our son's sweat tests were negative and the genzyme panel for mutations was also neg - no mutations found but it only tests for the most common mutations, not all of them. That's the next step for my son - ambry genetics and the biopsy for pcd. One last thing, have they looked into immune deficiencies? That's another possibility. They're diagnosed through blood tests. Also, is your dr with a cf center? Is that where the sweat tests were performed? If not, I'd definitely request one thru a cf center. Our sons were thru a cf center and he sees a pulmo with a cf center. HTH.
Dawn

 

[anonymous]

Yes, she had a bronchoscopy on Halloween. A verbal report from the Mayo Clinic indicated that her cilia were normal. Her sputum culture from the bronchoscopy grew out hemophilus again, but more normal respiratory flora than anything. She also had her immunity checked because her doctor was sure she had an immune deficiency, but it turned out that she doesn't. Another thing that I should probably mention is that she has problems with atelectasis and has had two pnumothoraxes.

Our doctor is not with a CF center and our sweat tests were performed through the regular hospital. Does anyone here think anxiety/stress can cause her symptoms? I have anxiety myself (as you all can probably tell haha).

 

[anonymous]

I forgot to add - thanks for replying, everyone. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Anxiety may contribute but I don't see how it could cause her symptoms. Just my opinion, but I'd request a sweat test and ambry genetics test with a cf hospital. And, of course there's also the possibility that she doesn't have cf. What's her dr's thoughts? Does he think she has *just* refractory, severe asthma?? Very severe, life threatening asthma can certainly cause all the symptoms she's having, too, although I'd probably still do the genetics test.

 

[anonymous]

The doctor said he's never seen such large amounts of mucus produced in an asthmatic. He doesn't think it's CF based on the sweat testing, but before that he was concerned that it could be. We're all stumped. She was diagnosed with moderate asthma at three years of age, and since then it's gone from mild, back to moderate, and now severe.

The doctor is even beginning to think that she uses illegal inhalants or sniffs glue. Now, I'm always in her room and have found her private stuff (diaries, etc.) but nothing that would make me think she does anything illegal or even smokes cigarettes for that matter. However, because of her recent admission to the hospital with IV steroids and a lung function of 96% (up from 47%), he says that the damage caused by glue sniffing is permanent and her lung damage obviously isn't.

Again, we have no family history of any lung problems, but there is a long family history of allergies and eczema. Maybe I should be asking this question on an asthma website. Thank you all very much for replying. God bless.

-Barb

 

[anonymous]

Barb,
I would look into some good asthma sites. www.asthmatrack.com, and www.parentsplace.com/messageboards/ - choose asthma under children's health issues. Theres also some good groups at yahoo, too.

Also, if your dr is blaming it on glue sniffing and you're sure your daughter isn't doing that, I'd switch drs. (Of course that's assuming you feel very comfortable you know your daughter isn't.) Just my opinion, but I'd think you know your daughter better than her doctor. And, I definitely think it would not hurt to have genetic testing for cf done. But, it could definitely be *just* severe asthma, too.

Good luck.