My daughter is five years old. Since birth she has always been a mucusy baby, but onlyin her chest. She does not have a runny nose very often. She had multiple ear infections as an infant and had tubes put in at one. She had a test for whooping cough at 6 months, and a bladder infection. Before a year, she had bronchitis. at eleven months because she was mucusy and her stools were white and hard she was tested for liver enzymes, hepatitis, cystic fibrosis and trypsin and some immune deficiencies. Her cf test was the sweat test and it was borderline, so we didn't go there. She had pneumonia again at 18 months. Inbetween she would get a cold and have a very rattling cough for a good 6 weeks. We treated her with nebulizers, which I didn't think really helped. Even after her ear tubes were in, she continued to have ear infections, but not as often. She started croup at age 18 months as well. When she was almost 3 she had pneumonia that sent her temp souring and her white blood cell count over 30,000. She had a grand mal seizure. Her pediatrician thought the x-ray looked odd and wasn't really sure that it was pneumonia even though the radiologist said it was. She continued to have a phlegmy cough on and off for weeks at a time and sometimes would have croup. She has now been phlegmy for the past 2.5 weeks. Her weight is 41 pounds and she looks healthy, but has always seemed to not want to walk anywhere. She would rather take the stroller, she does seem to say she is tired quite often. Often her lungs sound clear despite the noise in her chest. Her x-ray did not show typical pneumonia but rather a hazy area over her middle right lobe. The ped thought maybe atypical pneumonia. He thought he could hear some crackling. What does a cf patients lungs look like on an x-ray. Does anyone have grey stools? She has always had like stringy mucusy stuff on her stools. We tested again for cf today and are also testing for Ig deficiencies. What do you think? I am so frustrated everytime I hear her cough.

I would suggest having a genetic blood test to determine if there is CF of any other genetic problem. DS has CF, but his sweattest's have come back NORMAL -- not borderline. His genetic tests have shown the homozygous f508 mutation for CF. A lot of times the sweat tests are done by people who are not properly trained. IS there a children's hospital near you or an accreditted CF facility?

Her cf sweat test was 48 and they won't do further tests unless it was 50 or more. Her test as a baby was a different number. Why the different numbers? I thought once it was a number it would stay at that number. Should I pursue? She is on day 4 of zithromax and is still mucusy wet cough and miserable, but playing.

I don't know if its changed but 40-60 used to be borderline which means your daughter's test(s?) were borderline.

Also if she is on steroids(prelone,orapred) that can lower the sweat test results

Her cf sweat test was 48 and they won't do further tests unless it was 50 or more. Her test as a baby was a different number. Why the different numbers? I thought once it was a number it would stay at that number. Should I pursue? She is on day 4 of zithromax and is still mucusy wet cough and miserable, but playing.

IMO, keep pursuing it if you think something with your child isn't right. Get an opinion from another healthcare professional. I think it was mentioned here or in another threat that sometimes people who adminster the sweat tests aren't trained properly or it's not through an accreditted CF program. My son also tested NORMAL on his sweat test. Not borderline -- NORMAL it was 30 something. His two genetic blood tests, as well as a bowel obstruction caused by meconium illeus proved that he DID have CF.

She was on pulmicort nebs, would this lower it? Also she has been on Zithromax antibiotic for 5 days and is still mucusy? Is that okay?

I did have her checked for allergies and the naturopath said she was allergic to milk, eggs and yeast and so she is off of all of that for at least a week.

I live in British Columbia, so getting a second opinion is very difficult. Our children's hospital is 4 hours away.

Michelle

She had strep in November and now she has been phlegmy for the past 3 weeks. The pediatrician just tested her again for cf about a month ago and said it was not positive. He listened to her lungs last week and said that he could hear noise in her right middle lobe and maybe her lower. He said try her on singulaire for 5 days. Didn't work, so he ordered an x-ray and lung function tests. She definitely does not want to walk very much. He is thinking maybe right middle lung syndrome. What do you think? Her last pneumonia was in the right middle lung.

Did they just do a sweat test or did they do a genetic blood test? Like cfmommy's son, our son also had a normal sweat test, but genetic bloodwork showed two cf genes = cystic fibrosis diagnosis. Was the CF test done at an accreddited CF center? Sometimes if the person conducting the sweat test isn't familiar with proper procedures, the reading ends up being false.

I live in British Columbia and we do not have an accredited cf center although we do have a children's hospital 5 hours away. My pediatrician just did the sweat test on both of my kids. I asked him to do the genetic test and he said he will consider it. I said I didn't care if I had to pay for it. It is a slow painful process here and you cannot easily get a second opinion because our medical is paid for by the government.
She is still really mucousy in chest today. Did you find that asthma medications help that? I don't. Did you find your child could be mucousy for quite a few weeks before getting infection?
They did check her stools for fat and didn't find any although she has had mucous in her stools.

We always use asthma meds -- albuterol and atrovent via a nebulizer in conjuction with chest physiotherapy. DS is rarely congested -- when he is, it means he's coming down with a cold, upper respiratory infection and several times he's had to be put on antibiotics.

it sounds like textbook cf to me but that is just my opinion. my stools have mucus in them and they have since i was born. i am tired all the time. and i don't like to walk if not necessary. i hope you have answers soon

I was wondering which type of dr's order a sweat test usually.
Ped
allergy/immunologist
etc.
Thanks

We had three different pediatricians and one of those specialized in immunology. A General Practitioner usually does not order this(but can), but a general pediatrician will after taking a history.

Problem is that sweat tests, which used to be considered the "gold standard" aren't necessarily accurate. Maybe if done at an accreditted CF facility; however, DS is a prime example -- his was a normal 32. His genetic blood tests showed CF.

The neonatologist at the NICU ordered the genetic CF test for our child because of his symptoms. The sweat test was ordered by a doctor at a CF Hospital.

Basically a sweat test is a start, but don't let your doctor try to tell you a test isn't needed because there's no family history. Neither DS and I have a family history of CF and we've looked back extensively into our families geneology.

I am asking because my daughter is seeing an allergist/immunologist next month. I was also reading that the sweat test looks for a large amount of sodium and chloride,I was looking at some past blood work my daughter had done and her chloride and sodium were at the highest point of normal. I don't know if that says anything or not but her skin sometimes is salty when I kiss her on the head. are there any other tests they do.
Thanks

Usually if the sweat test shows borderline 40-60 or high 60+, then they'll do more extensive testing. They can order a genetic test, which test for the more common mutations or there are a couple of companies ambry and quest which test for hundreds of mutations. I believe testing takes about 1 to 2 weeks.

I don't know what type of genetic blood test they did on DS -- got sent to mayo clinic. But he has one of the most common mutations -- two copies of delta f508. And yes, he does taste salty. And in the summer time, if he's outdoors and gets a little warm -- he actually has salt crystals form on his hairline.

Yes, although they say that a sign is a salty taste when you kiss them. They can do a blood test which will show if they have the gene for cf. They test for quite a few, but not all. I think it is pretty thorough. My daughter was in the borderline range for cf on the sweattest, but because she was not over 50, here in British columbia, they do not send for the gene test. The gene test would be the final test though.

Can I ask why the doctor order a sweat test for your children,What were the symptoms or made him suggest a sweat test?
Thanks Alot

My son was always sick with respiratory infections and a few pneumonias.

My daughter - I wrote about her in the first part of this thread -- chronic phlegm, chronic lung/respiratory infections, tired, white stools, etc., Just always sick.

My 3 yr old daughter is sick alot too. She has had recurrent pneumonia and a ton of chest infections now she is phlemy even without being sick. But in the last 6 weeks she has had 3 chest infections. When she starts with a simple cold is goes to her chest everytime and she gets sicker.
Thanks for the info
I am waiting for her Gi to email me back, I asked him these questions.

Her gastro emailed me back and said I should speak with her pediatrician about the work up for this. But her ped didn't even know much about celiac I doubt he has kids with cf or even know the testing for it. He is a small practice not a chain.
How would I ask something like this to him and do I ask a nurse,what do I say to get an appt or ask on the phone. I am so confused.
Thanks

one more question. Did your children taste salty on their arm etc or just on forehead or face?
Thanks

She is scheduled for this friday at our local childrens hospital that has a cf center inside.
Thanks

I hope you can get some answers that will help your daughter.

Thank You. Do you know if the skin is just a salty taste on their forehead,Or is it everywhere like their arm etc.
Thanks again

My son (who has CF) has only tasted salty to me maybe 3 times and each time it was when I kissed his forehead. So to answer your question, I don't know for sure if its all over but I don't see why it wouldn't be. Every time I see symptom lists I see "salty skin" listed.

Let us know what happens with your daughter.

Today is the sweat test, I am nervous. Hopefully after it is done the results won't take too long to get to the pediatrician's office. I think it is 1 day but where it is friday they probably won't know until next week.
Only bad thing about having tests done on fridays.
I will post after to let you know how it went.
Thanks for all the advice.

Is the sweat test being done at a CF accredited facility? From what I have heard they are the only ones who know how to "properly" administer the test. Is the test in the morning? It is also my understanding that the results are available pretty quick so you might be able to get them today. I would put in a call to your pediatrician (or whoever the results get faxed to) that as a common courtesy you would like to know the results so you don't have to sit and wonder and wait all weekend. We all know how hard it is to play the waiting game with something like this.:dizzy:

It was done at the sweat lab at the children's hospital
It is negative.

Did they give you a number? 0-40 is normal, 40-60 borderline, 60-+ is positive...

I'd also encourage genetic testing. DS had a normal (32) sweat test. AND it was done at an accreditted cf facility/children's hospital.

I'd have to agree about finding out the number as well.

They didn't give me a number because the dr's office left the message that it was normal on my answering machine. I can call for the # tomorrow or monday. They said the ranges are 0-39 is neg 40-59 is borderline and 60+ positive

My daughters was 48, but in Canada they do not send for the genetic tests unless she was above 50, which sounds ridiculous to me since they should leave a bit for error. Good Luck!!!!!!!!