What does this sound like? - Cystic Fibrosis Message Board

AlaskaChickie · 06-19-2002, 03:19 PM

My 2 yr old son was born at 32 weeks had some lung problems but got over them quick. He came home from the hospital 6 weeks after birth. Never had any problems after that. About 2 months ago he got this really bad cough (seems worse at night) Its there all the time. He was gaining weight very well and growing well also. I took him to his Pedi. 2 weeks ago, to see what was going on with this cough. (family history of Asthma and CF) Well, while there we looked at his weight because I had noticed that his diapers were getting loose on him,also his clothes were getting loose as well and he didn't seem to be getting taller (pants were still the same length). He hadn't gained any weight in over 6 months or gotten any taller. The Dr. said his Thyroid glads were swollen so he ran tests and they came back normal. We go back in on this friday (6-21-02) I'm at a loss. He eats like a horse. None stop eating. I noticed this morning that his ribs are sticking out. He never looked like this before. He has always been a good weight gainer. Always in the 95% and now all of a sudden in the 40%. He coughs really bad espically at night sounds like alot of mucus but not like an asthma cough(2 sisters with asthma)He is always really sweaty (wakes up in a pool of sweat every night and morning) He was gaining weight well and the just stopped all of a sudden. Also, I don't know if this has anything to do with anything but, he has the stinkest poop I have every smelled. It gags you when you change his diaper. I have 5 kids and none of them ever smelled like this. It is also very sticky, it sticks to him really bad its kind of like paste. I know you didn't want that good of a discription. But I need to hear if any of you have ever had this happen to you and what you think? Thanks for your replys.
AlaskaChickie

keryn m t · 06-20-2002, 03:49 AM

hi, my name i s Keryn, I know u won't want to hear this but it does sound like c.f. I had a foster daughter with c.f. got her when she was 2 and she was very bad. looked like a beafrian, so thin, big stomach, cough moist, sticky and very smelly poo. the doctors didn't expect her to live more than 6 mths, but with my constant care she lived till she was 8.
I had to feed her through a gastrostomy (through tube in stomach connected to a machine ) every night. Then she got diabetes from the medication. great needles. I thought I could never do that. but after the first time I was right. poor kid had a terrible life, but she did go to school some time, and was loved by a multitude of people. get the tests done for c.f. and get onto it straight away, it will improve his life.
hope I've been some help. Keryn from Australia.

Proud mom · 06-20-2002, 06:30 PM

Hi...I had a very similar experience with my daughter, who is now 12 yrs. and has CF. She was finally diagnosed at 2 yrs., but after much pressuring,Dr.s finally did a sweat test which confirmed diagnosis. My daughter had all of the same symptoms..coughing until she was throwing up, smelly poop, eating her heart out.
I'm glad to hear you are seeing a Dr. tomorrow. I would suggest pushing for a sweat test. Best of luck to you.

AlaskaChickie · 06-21-2002, 11:01 PM

Thankyou both for your reply... We went to the Doc today... He said he is not at all worried out our sons weight loss or that he hasn't gained in 6 months... He did however agree that getting a sweat test would be a good thing... He said that with our family history of positive CF that it wouldn't hurt just to be sure its NOT CF... So, we are doing that next thursday (6-27-2002) He told me that with his cronic cough that he is curious... I also told him about our son being really sweaty all the time like sticky sweat and having to give him alot of baths and he said, well, some kids are just sweaty... We have been with this Dr. for over 3 years and he has never said anything snide like that before... Well, maybe he thinks I'm just a worrier... Thats ok... Anyway... Thought you would be interested to hear the results of todays Dr. Appt.
AlaskaChickie