question about CF

[anonymous]

Hi,
I am a mother of a 6 year old boy who has had chronic intestinal symptoms on and off for his whole life. We did a special diet that helped some, but not entirely. At one point, they did a sweat test on him, but did not get enough sweat for the test to work, and the doctor felt that he was only doing it to rule it out, so he did not think it was worth it to repeat it. I am concerned that although his growth is not delayed, he has not gained much weight in the last few years (since stopping the diet and stopping nursing). He nursed until age three. Anyway, I guess I am just looking for some advice if I am just being overly concerned or if I should seek out counsel and ask them to repeat the test anyway. Does anyone have any information about someone with a CF diagnosis who had milder symptoms, and maybe how they figured it out?
Many thanks!

 

[65rosessamurai]

Hi, my name is Fred.
Your user named showed you as 'Anonymous', and your name was not mentioned. That's OK.
I'm no doctor, but I wanted to use my knowledge to reply.
I was diagnosed at 8 and a half, during that time my mother had suspected something wrong with my health that the GP coudn't see.
I was diagnosed by the sweat test, but I've heard that there is also genetic testing available. If you are not seeing a CF physician (The CF Foundation Home Page has a link for CF Centers), I would suggest doing so.
If they can re-do the sweat test, and it doesn't show positive, it's still possible to request the genetic testing. Even with the genetic testing, it may on the other hand find something else.
The basic test you can do as a mother is to see if your child has a salty taste to his skin or even when kissing him goodnight. A long while ago, the CF Foundation had a "Kiss your Child" week, which was to promote diagnosis for children with CF.
As an Adult with CF, that's the best I can give.
Good luck, and God Bless.

 

[anonymous]

Hi there,
My daughter was diagnosed at 18 months. She had very mild symptoms. The only thing we were worried about was the gastro problems as in, large fowl smelling stools. She also had a chronic runny nose. We had the sweat test and never thought it would be positive and it was. Another disease that causes these same gastro symptoms is seliac disease (not spelled right) it is when someone is allergic to wheat. We had my daughter tested for this as well. You should go to a gastro doctor and have them test your son for both CF (sweat test) and Seliac disease. We had to fight with our pediatric doctor to get them to send us to a gastro doctor, so my advice is to force him to write you a referral or get a new doctor.

Lynsey-mom to Avery 2yrs. w/CF and Rhett 7mos. no CF

 

[anonymous]

Lynsey again. My daughter was not salty to taste, so you cannot rely on this as a diagnosis alone.

Thanks

 

[anonymous]

Lynsey again. My daughter was not salty to taste, so you cannot rely on this as a diagnosis alone.

Thanks

 

[anonymous]

Thank you for your replies. I am just feeling like I don't know if it is just me being an over-worrying mom, or if I should pursue it. But I guess since the tests are not terribly invasive, it would be better to ask for them and at least know or rule it out. Thank you for the info!

 

[Edna0312]

Hi. I am VERY curious about your son's symptoms!! I am currently searching for answers about my daughter(2 1/2 yrs and my son (4 mos.). We have had non-stop GI problems since birth! We've had three sweat tests on my daughter, and one on my son. All of them negative. Now we're going for genetic testing.

I would love to hear more and compare symptoms!

Edna
daughter, 5yrs; daughter, 2 1/2yrs ??CF; son, 4 mos. ??CF

 

[HollyCatheryn]

Celiac disease does produce many of the same GI symptoms as CF. In fact, many people with mild CF are misdiagnosed. A simple test for Celiac is cutting out gluten. Gluten is in wheat, but also in oats, MSG, spelt and graham. Some people are very sensetive, so it is important to cut it out completely and it may take a couple of weeks to notice a difference if there will be one. Then you can slowly add gluten back in to see if the reactions return. Then you will know for sure and will also determine a tolerance level for your child. Symptoms of Celiac that mimic CF are: fowl, plentiful gas and stools, colic, lack of sleeping well, growth delay, weight-gain problems, anemia, B-vitamin deficiency. If left untreated they can undermine health further because of nutrient deficits and the body fighting itself. It can also cause learning delays because of malnutrition, poor sleep and frequent illness. If it is CF and not Celiac, the diet will not really change anything. Symptoms may improve slightly for a period of time and then return.