Here are some suggested organisations that offer expert advice on SN.
cystic fibrosis? jmb?? help!(15 Posts)
OK - situation is that ds2 has been puffy for ages. I've waited until he's got rid of all his never ending winter colds - but he's still coughing a bit at night, and allways when running around so I decided to make an appt with the dr about possibility of exercise ninduced asthma. He also has a barrel shaped chest (still with his lumpy thing on the bone- but that's remained in proportion).
Ds3 has been a bit coughy since born- he tends to cough up a kind of stringy saliva- it's not thick really just a bit mucusy. Will cough it up ages after a feed- before then tends to peuke a lot - even quite a while after a feed. I've assumed it was reflux, and pretty much ignored it.
Today my cleaner kissed ds3 and said "ooh my doesn't he taste salty". And he does kind of.
Both booys are quite sweaty (ds3 sweaty feet, ds21 sweaty in early hours of night).Both boys put on weight easily (which is why I'vbe ignored the supposed reflux).
But I'm thinking the obvious - I have an appointment next Wednesday (we have locums in at the moment- and I wanted to wait for the nice one I've seen a few times). I'm not panicking panicking, more just wondering how salty is salty, whether the reflux is reflux, and whether ds2's barrel shaped chest is signifiicant. And also whether its possible to have CF and put on weight normally (I always thought it wasn't but haviing had a quick browse am now not so sure).
Any dr type advice would be welcomed.
jimjams, sorry have no answers for your questions, but just spookily received a press release from CF people re their conference last week in Manchester. at the bottom they put their CF helpline is 0845 859 1000, www.cftrust.org.uk
thanks bundle. been licking him all afternoon.....
JimJams, re your DSs lumpy bit and barrel chest - DS2 has a large chest, complete with lumpy bit right at the bottom of the ribcage, and I mentioned it to my GP last week. He was completely unconcerned in a "Oh, some people have them, they're called <<insert some sort of sternum here>> and we'll just keep an eye on his chest to make sure it develops correctly" way.
Can't say I've ever felt the urge to lick DS2 though so that didn't come up at my appointment
stop licking him, he'll wear away.
hope the appointment goes well.
dont let them fob you off (not that you would, but you know GP's)
Jimjams, it is possible to put weight on normally and have CF, but essentially that means that it could only be a very mild mutation. You probably know that since DNA testing became available it has turned out that there are lots of people walking around out there who have CF but had been completely unaware of it. They may have mild breathing problems with infections and so on, but it has not been enough of an issue to get a diagnosis.
What I'm trying to say is that if ds2 is basically thriving, which he clearly is, it may not be anywhere near as bad as you would think even if he does have a mutation. However, it seems highly unlikely that he (or ds3) does. I went through all this when ds was small, because of what turned out to be asthma, and I remember thinking he tasted salty too, but he's now a strapping 10 year old.
Is there any chance you could lick ds1 as a control, or would that be too hard?
ds1 has been pueking for 2 days! No way am I licking him
I've been licking myself. ds3 isn't exaclt salt and vinegar type salty but he is salty. he's also thriving (piling on the pounds like crazy).
You answered my question anyway tamum- as if there is a problem it must be very mild- I just hadn't realised how mild cf could be. I'm fairly sure that ds2's funny chest shape is causing his coughing on exercise so I'm hoping he'll grow out of it as he gets older.
I dread to think what they'd find in my genes.
it is really salty, a bit like a whole layer of salt on the skin iykwim
Hi Jimjams - sorry I managed to miss this earlier - too busy drivelling nonsense elsewhere..
I would definitiely agree with Tamum - your ds2 when I saw him certainly didn't look at all CFish, so even if the genes were to show something it would have to be very very mild. I think all our children taste slightly salty lick lick, and anyone will if they have been sweating. Our boys are both much sweatier than the girls. (also hotter hands - I notice it when I'm clearing up after meals, hot cutlery from all the men in the family!)
Mild asthma much more likely, esp if he coughs a lot at night and on exertion - wouldn't exactly be caused by barrelly chest, but could be related. Is there a family history of atopic stuff?
Were you screened for CF at all in your pregnancies? It varies around the country, I think, but here we do salivary testing.
Hope all's well otherwise..
Hi Jmb - thank you! No none of my boys could ever have been described as failture to thrive (except ds2 when tiny but he had an infection). been licking the paiir of them and they don't seem that salty to me. Anyway seeing lovely locum gp next week so wil ask her.
Lots of atopic stuff, but I don't think ds2 really responds to that (unless cat? but how would I know she's been around most of his life)- it seems to be more on exertion or change in temperature.
Thank you though- very helpful
Dh (who has had almost everthing except cp, or so it seems sometimes) is very, very sweaty. To the point of soaking his pjs at night....at this pre-dated the cll by many, many years. All his brothers are the same.
I agree that it is true that all people taste a bit salty, I know that dh does and so does ds.
Another indicatior for cp is unuasy bulky faeces. These can smell very bad and because of the poor digestion and absorbtion of fats tend to float (soory if that is too much info.)
Oh and the lumpy bit at the bottom of the rib cage cropped up with one of my mate's kids. Quite normal.
Join the discussion
Registering is free, easy, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.Register now »
Already registered? Log in with:
Please login first.