(diagnosing cf)

[Guest guest]

Hi,

I read your intro. letter about Caleb. All I can say is keep pushing for a

diagnosis until Caleb's doctors can figure out what's wrong with him, even

at some point if it means going somewhere else for a second opinion (though

I know this can sometimes be impossible with HMO rules or limited facilities

in certain areas). You sound really on top of things. I'd follow up on all

of it. Keep in mind that oral steroids can cause diabetic symptoms in

children (or adults) when used long-term. Sometimes the diabetes reverses

when the steroids are stopped, and sometimes it doesn't. With Caleb's

constant thirst and urination I'd press the doctors to follow up on this one

and do some testing to rule out diabetes. Meagan was tested for diabetes

once during an extended course of oral Prednisolone (she also had frequent

urination and increased thirst). Her results were normal, but just barely.

Her symptoms resolved after stopping the oral steroids.

Before Meagan was diagnosed with CF, her diagnosis was moderate persistant

asthma. There was one year that she was on a total of over 60 days of oral

Prednisolone for her asthma. She does have asthma, but since she was

diagnosed with CF and started chest PT, antibiotics, etc., she has

drastically reduced her need for oral steroids and her asthma has been under

much better control. This year, it's been nine months since her last short

burst of oral Prelone (we never could have imagined going this long without

oral steroids in the past).

Has Caleb had any of the supplemental tests like simple sputum cultures

(deep throat cultures in the case of a toddler) yet? Or the fecal fat test

for his stools? Recent chest X-rays? These tests can do a lot to support

or make less likely the diagnosis of CF. And you mentioned Celiac disease.

Did you know that there's a blood test for Celiac disease now? It sounds

like that would be a good thing to rule out. (Oh, just read that they're

doing a biopsy, so that should catch CD if that's what's going on-- good

luck on Monday).

To answer one of your later questions, yes, any child can have food

allergies, whether they have CF or not. We're watching Meagan (wcf)

carefully to see if she develops problems with milk since her sister

(Kailin, no CF), father, grandmother, and uncle can't tolertate milk, and

Meagan has had trouble when she drinks a lot of chocolate milk at school,

and has never liked milk. As for exczema, it's VERY common with a child who

has allergies, esp. food allergies, and common in children with asthma--

kids with cf get exczema like anyone else. (I have heard one mom mention

that her child had a rash that was actually somehow caused by his cf, maybe

a nutritional thing, but don't remember the details.) Kailin's exczema

cleared up after we finally figured out she's allergic to dairy and cut all

dairy from her diet. Meagan has also had mild exczema on her cheeks at

times. Keep asking your doctors lots of questions, and talk to them about

any changes you see in Caleb when you introduce things like wheat. A severe

food allergy can cause lots of problems.

A note on the sweat test-- since they didn't get enough sweat, the negative

results don't mean much. Not getting enough sweat can cause false

negatives, so the test needs to be repeated, and if I were you I'd also ask

for the gene test (a blood test). The gene test can't rule out CF because

many mutations aren't inculded in the test, but it can catch the more common

mutations and is a very useful diagnostic tool (Meagan wouldn't have been

diagnosed without it).

Hang in there, and I really hope that they can diagnose Caleb accurately

soon, whatever he may have, and get him feeling better. I just skim the

cfparents list, so if you ever want to contact me, feel free to e-mail

directly, or put my name in the subject line of the list message so I'll

notice and read your message. Best of luck!!!

bye,

, mom of Meagan 5 (cf, asthma) and Kailin 8 (asthma)