Cystic fibrosis symptoms?

[mommycarol]

Hi ladies,im new 'here so bare with me :) i did post my question with another title but not sure if that was the right one.' So i need some advice for some weird things my son developed recently!! he seems to get quite wrinkly in water and fast! i made the huge mistak'e to google and b'ammm hel'l brike l'oose.'everything says cystic fibrosis..' my son is 2'.5 years old no other symptoms. We do have a sweat test in 10 days but it drives me crazy really.'.'any moms had something similar but enden being nothing??please help,im so stressed right now..thanx xx

Anyone?

Was your son born in the UK? If so all babies get tested for CF at the newborn screening heel prick test and it’s rare for CF not to be picked up at this point. Also has he any other symptoms such as bowel issues, poor weight gain or chest infections? If not again it would be really rare to not have any other symptoms.

@bringmelaughter thanx for replying! No,my son was not born in the Uk..in my country we dont do the heel prick test..No chest infections,his weight is ok..below average but eats a lot! We had some weird poop in the past but not something serious..Now ive noticed that when having a bath he wrinkles fast! Something called aquagenic wrinkling..on the net says that has strong connection with cf.

The pancreas doesn’t work when you have CF. At 2.5 years you would definitely know if this wasn’t working

The vast majority are diagnosed before 2. Its quite rare to be diagnosed before.

Is there any reason to think both you and yes father carry the gene?

Failure to thrive
Very smelly loose stools, floating stools
Recurrent infections chest ear throat
Does he taste salty?

@Ladylokidoki no,not really..the doctor ordered the sweat test cause i told him some of the symptoms..he examined him said everything seems fine..but tild me to get the test..to ease my mind probably. But im quite fearful and stressed..cause he developed this thing when having a bath,his hands and feet get very wrinkly quick and on the net everything says cf.

Any other CF symptoms?

It could be that he is a carrier of the gene, rather than having CF

@umberellaonesie hi! Well his weight is ok,within the normal but below average. He did have stinky loose poop with mucus in the past but havent seen any in a long time. No chest infections no throat infections. He does taste salty sometimes where his hairline starts,forhead. Especially if he gets sweaty.

It’s a relatively unusual symptom to present with CF with. Generally other things are noticed by this age. There are rarer and less severe genotypes of CF that don’t always cause the more noticeable symptoms but this is more unusual.

My advice would be step away from google and wait for the sweat test. I know that’s hard but it seems that your healthcare team are being proactive in checking.

Some mutations of CF don't create pancreatic issues so he wouldn't necessarily have the greasy stools of CF patients with with more common mutation.

Is his skin salty? If you were to kiss or lick his skin if he has CF it will taste salty.

Are his nails clubbed at all?

If he did have CF it would like be a mutation that is rarer and 'mild' in symptoms.

Wait for the sweat test and then take it from there, it's unlikely without any other symptoms but even if he did, CF modulators are around now and helping thousands of sufferers live almost normal lives.

My son is 16 with CF so have any questions please ask.

@Ladylokidoki no other symptoms to cause alarm..and im a very proactive mother,i mean i notice things,really hard to miss things .

@bringmelaughter thank you! Yeah ,i really need to stay away from google..

@Goshitstricky Hi and thank you! He only tastes salty sometimes in his forehead,where hairline starts to be precise,but just there,no other place. No clubbed fingers. Are you familiar with aquagenic wrinkling? My son gets wrinkly in bath relatively fast and read that thats a sign of cf?

I agree with PP, step away from Google.

All kids taste salty, from time to time, when you kiss their forehead. That's not usual.

Unless it's all the time I wouldn't panic just yet.

Again loose mucus bowels happen occasionally, unless it's often I wouldn't worry.

On balance, I would say its most probably not CF. But the testing is still sensible. Good luck.

People with CF do tend to wrinkle in water very quickly and to an extreme because of the high sodium levels in their body.
All you can do is wait and see I guess but if he's otherwise a healthy little boy I wouldn't be too worried. Let us know how it goes, there's a great community if the sweat test is positive.

@Goshitstricky he is very healthy and alway happy and easy going! Yeah i guess not so much to do but wait for the test..one week to go..but the waiting is horrible..

Forgot to say my cousin has CF. She is older than me so I don't remember her pre diagnosis.

My mum said she was salty all the time. That's the first thing they noticed. Our family is from Northern Ireland, where its more common than most countries. So we have always been on the look out for symptoms.

@Ladylokidoki thank you

@Ladylokidoki yeah,ive read about that! Ireland has a high rate of cf. As i said he just taste salty only in forhead where his hair start. Thanx.

The salty thing freaked me out a couple of times with DS. He had the heel pick test, so I knew it wasn't. I also knew his father wasn't a carrier, as I am.

But the first time I tasted his sweat, I admit I panicked. So I know. I think what you are describing is usual sweaty toddler

Are you Irish ?
Sadly one in 16 irish people carries this gene.

@Ladylokidoki yeah i know!! And then its like a domino!! Hehe. Forgive my grammar by the way,im not english.

@StillCalmX Hi :) no,im Greek from the island of Cyprus! I will not be surprised if you never heard of it! Pretty small country,not even a million.

Love Cyprus, visited quite a few times. Absolutely beautiful. Hope to return soon ❤