confused about symptoms

[lenamir]

Hello

My 7 month old son seem to have a lot of CF symptoms - cronic productive cough, unability to spit up mucus, loose very smelly frequent bowel movements. I took him to the Ped almost every week as he was not gaining much weight. Last Friday they did a chest X ray that showed no sign of lung infection and, therefore, my Ped said it is extremely highly unlikely that he has a CF.

I have also given hima steam bath today to losen his mucus. And, of course, licked all of his sweat to see if it was salty. It was NOT salty at all.

May be he does not have a CF after all, it is just me sweating over it. I admit I am a neurotic and anxious first time mom.

Just wanted to ask for your opinion - does the fact that his sweat from the steam bath does not taste salty mean he may not have the desease????

Thank you!

An anxious first time mom

 

[Emily65Roses]

It doesn't really mean anything, one way or another. It's hard to tell by individual symptoms. You have to go with overall. And CF changes *so much* from one CFer to another. If you're really worried about it, demand a genetic blood test.

 

[rcq925]

I would ask your doctor for the sweat test or the blood test. Both very simple tests, just make sure they are done at an accredited CF Center (find a list at www.cff.org). It will ease your mind to know one way or the other and he does have a lot of symptoms of CF, but they could also be symptoms of other things. My 18 month old daughter has CF and she does NOT taste salty, so not all kids with CF do! Good luck and let us know what happens!

Becky, Mom to Nathan, 4 without CF and Hayley, 18 months with CF

 

[anonymous]

they never picked up my daughter had cf until she was 3 and a half and at that time they did xrays on her chest and they r all clear .as clear as a kid without cf
she always put on weight
i keped takin her to the doctors because she had a cough ..they finally dicided to do a sweat test .but they didnt think she would have it .........turns out they were wrong.
my daughter had ridges down her nails and i did notice her number two's were greesy, these were things over the years i had mentioned to the docs...................i realy had to push for that test because they thought she was just prone to coughs

 

[rose4cale]

I'm another Mom who pushed and pushed. My son had up to 12 BM's a day. They were loose, bulky (especially when he started solid foods), greasy (his diaper absorbed an orangish colored liquid from his BM's) and they didn't smell like poop. They had a sour smell to it. (I am a self appointed poop expert) He only tasted salty when he was sweaty and had been playing for a while. Not after a bath. He ate and ate with no weight gain. He also had a cough. I knew this was all not normal and yet my ped kept telling me he was fine. I got my way and we went to a hospital for a sweat test and they told me he was going through a phase. (it wasn't a cf clinic) So I pushed some more and made it into a cf clinic and through numerous failed sweat tests, they did the blood test which confirmed his cf. His lungs were clear as well on the xray.

Long story short, I followed my gut. If I hadn't who knows where we would be and what Cale's health would be like. He has done so well with treatments and meds that we are truly thankful for knowing. If you feel like you are not getting the answers you need, you have to find a doctor that will take your concerns serious. Don't let anyone make you think that you are overreacting and just being paranoid. Your son is counting on you!

Best wishes!

 

[rrew62]

I just wanted to say that i had to do the same. I pushed and pushed intill I took Maggie to Childrens and said I wasn't going home intill she was better. she had a sweat test done at her Ped. office and it came back positive and they refered me to Childrens but they wanted me to wait 10 days to get her in for another test. She had been so sick for sooo long I couldn't stand it any longer. I went with my gut feeling and I feel so much better knowing rather then wondering what in the heck is wrong. Maggie has been doing great since she came home, she's finally starting to act like a normal 2 year old!!!!


Rhonda- Maggie's Mom