Cystic Fibrosis- Sweat Test- Three Year Old

[mama2mason]

Our son is being tested for Cystic Fibrosis tomorrow.....he is undergoing the sweat chloride test.....his symptoms are almost entirely gastrointestinal, though he has had one bout of pneumonia. He has had croup a few times, but I don't think that counts as the lung/mucous disease typically seen with Cystic Fibrosis? I know our doctor probably wants to rule out CF before exploring other GI possibilities....but it is still a bit nervewracking. After hearing what the sweat test is looking for, I kissed him after a particularly sweaty playtime, and his sweat tasted very salty to me....but isn't everyone's sweat salty? FWIW, he sweats much more than other children when he's playing, but I don't think that means anything either? Could he really have CF and have such mild symptoms? Anyone out there have a child with CF that was diagnosed around our son's age (3), and shows only mild symptoms? Anyone been through the sweat test procedure? Just looking for any advice, BTDT, etc.

ETA: He is 34lbs. and has always been around 5th percentile for weight....he has had foul smelling, greasy, mucousy stools, constipation, stomach aches and gas....but really not many respiratory symptoms, save the aforementioned bout of pneumonia in August, and a few bouts of croup. Historically, he has been a healthy child. No ear infections, etc. He did pass meconium after birth (I guess NOT passing it can sometimes indicate CF early on?)

[kjbrown92]

I don't know anything about CF aside from reading a book as a teenager. I thought it was all mucous of the lungs. I've never even heard of GI symptoms, so that shows how much I know. But have you looked at food intolerances? They provoke all the symptoms your son has (my DS even has the massive sweat head when he's playing/sleeping).

[mama2mason]

Thanks for taking time to reply....yes, apparently CF can manifest itself in GI symptoms as well...I think they are just testing to rule it out, but it is still nervewracking!..none of the doctors have mentioned/thought of food intolerance really, though my husband and I have on our own. But to be honest, (I know it sounds stupid) I am not really sure where to start! We did eliminate dairy, and nothing changed...and I know they mentioned that another thought might be celiac disease, which I know is related to gluten in foods....beyond that I haven't really tried altering his diet....do I just start removing foods one at a time? Is there a food allergy screen he can have? I love our ped, and feel very comfortable with them, but they haven't mentioned food allergies, and I haven't really asked much about it either....it is a good place for us to explore more.

[sbgrace]

Our doctor's son was diagnosed at 4 or even 5 with CF and it was, in my understanding, pretty much entirely gastro. There are different forms/genetics in my understanding. His son is doing really, really well now with treatment--including his growth.

My son was sent for a sweat chloride test at about age 5 because of gastro and growth issues. He doesn't have CF. The test was really, really no big deal.
They stimulate sweating with some electrodes (that sounds horrible but it absolutely did not hurt...my son is extremely sensitive and said it was tingling) and then they put a pad in there to collect sweat and wrap up the arm. Then we walked around the hospital for a half hour, they took the pad, and we went home. On a scale of invasive tests this one doesn't even register.

There was a relatively recent thread about this test in the special needs forum. You might want to look over other's experiences but I remember everyone assuring the poster it was an easy test. It will be ok.

[kjbrown92]

You can get allergy testing to rule out allergies, but with the symptoms mentioned, it's more likely to be a food intolerance (I have my kids food allergy tested first to rule it out, just to make sure I knew what I was dealing with). If he gets tested for celiac, he has to be consuming gluten at the time, so if you want to get the test, wait on pulling gluten. Of course, you can have gluten intolerance without having celiac as well (like me, and 2 of my kids). The top 4 intolerances are dairy, gluten, soy, and corn. But any food can cause any symptom.

How long did you eliminate dairy for before? Sometimes dairy takes a couple of weeks to get out of your system, and gluten takes about a month. Other foods are less. But for instance, if he's intolerant to dairy and gluten, and you only pulled dairy, then he'd still have symptoms, so you didn't necessarily rule it out. When did he first start having the GI symptoms -- right from birth or not until you started solids? Did he have reflux as a baby? colic? Has he had ear infections? rashes? eczema?

I'm just giving you a different avenue to think of, if they rule out CF.

[Panserbjorne]

My dd did the sweat test to rule it out as well. Symptoms were mainly gastro and growth. It turned out that she had/has celiac disease. Hope you find the answers you need quickly, mama.

[chamomeleon]

Yes, the sweat test is absolutely not invasive, painful, or worrisome in any way. My husband was diagnosed with CF as a child, (may have been an incorrect dx, as he is now 36 with no symptoms) so we had our son tested shortly after he was born, to be armed with information just in case. (Our son tested negative.) I nursed him while they were performing the test and he never even flinched.

Good luck, I hope you get the answers you need soon.

[andres1]

We are actually in the process of getting tested. Our son has the same exact symptoms your did with addition to rectal prolapse. Did it come up pos/neg?

[treehugger86]

I wish you the best. There are many different mutations. Some of the mutations tend to result in more severe symptoms (i.e. more organ system involvements) than others. My DH and I know a few individuals that were diagnosed in adulthood. There are also a range of different treatment options that can help control the symptoms of the disease, increase quality of life, etc. The first drug to treat the genetic basis of CF (in a specific mutation) was approved by the FDA a few days ago. There is another drug in trial with a lot of promise.

I hope that you find answers soon. There is a strong CF community online. I recommend Cystic Life at http://www.cysticlife.org/index.php (There are family members, and CFers on the site).