can someone please help? - Cystic Fibrosis Message Board

iluvseannjoey · 04-03-2005, 09:35 PM

My 6 month old son has me worried and my doctor seems to be blowing me off. He has a constant cough and sometimes he coughs so hard he gasps. he also coughs up a thick whitish mucus sometimes and gags a lot. Also I have noticed after kissing him I can taste salt. He sweats a lot, so maybe thats what that is from, but he always eats. He is still eating every two to three hours, even with solids. His stools smell awful, enough to gag me and he was measuring the same length for 4 months. He just now started to grow some. I am worried about cf, only because i came across it looking up his symptoms, but my doc seems unconcerned. Am i over reacting?
Denise

cfmommy · 04-04-2005, 09:26 AM

You're not overreacting. I would ask your doctor to test for CF and if you're not getting satisfaction go elsewhere. Even if it isn't CF, I'd be concerned with coughing up stuff and risking lung damage. There's no reason you and your child should be suffering.

sherry092 · 04-04-2005, 12:07 PM

I was in th e exact same situation, 2 yrs ago. My son had a cold for months, coughing, and was just miserable. He was losing weight and when I mentioned CF to my dr. he totally blew me off. I was just being a nervous first time mother.

The "cold" my son had turned out to be pnuemonia and when I read about CF, I got very nervous. His skin was salty as a pretzel. Our dr. still blew me off, until I demanded a sweat test. He finally agreed and it was positive. We spent the next 3 weeks in the children's hospital because my 5 month old was 10lbs & very ill.

So NO I don't think you're overreacting, I just hope you are. A sweat test doesn't hurt at all and tell your dr. you want one at once. You can also ask your Obgyn if CF screening is done on all newborns in your state.

iluvseannjoey · 04-04-2005, 12:29 PM

i have already looked it up to see if newborns here are screened and they are not. We had the option to be tested to see if my husband and i were carriers, but i turned it down. cf doesn't run in my family (i was not fully informed about the test) so i thought i had nothing to worry about. My son hasnt lost weight, he just never stops eating ( i believe in demand feeds) thank you for your advice. I have a call in to a genetecist in my area. do all people with cf have the same symptoms? He has most of them except he hasnt lost any weight. Maybe its not cf?

cfmommy · 04-04-2005, 02:37 PM

Not always the same symptoms. I read an article about a couple who underwent carrier screening when they were expecting their second child. Found out they were carriers and that the new baby had CF. They went back and tested their 3 year old who'd never been sick a day in her life. Found out she had CF. Recently met a woman whose daughter wasn't gaining weight and had constipation issues -- the doctor decided to test for CF to rule it out. Child had CF. Other people I know of had children with lingering upper respiratory infections. Another person I met when DS was hospitalized at birth found out her daughter had CF because her stools were funny looking.

CF doesn't run in our family either. Again, maybe it's not CF. A simple painless sweat test could tell you and if your doctor isn't willing to perform it, maybe you should keep pushing or find another doctor.