DS excessive hand wrinkling. Cystic fibrosis? So worried!

[Beebatron]

First of all pleas be gentle with me, we have suffered a lot of illness in our household recently and I am having such a horrendous time with health anxiety. I'm in treatment but tonight I just am at my wits end.
Ds came down after a (admittedly long) shower and his hands were so wrinkly, to the point they were hurting him and I'd genuinely never seen them like that before. He says its been happening for a while and sometimes they hurt after. Stupidly I googled and the first thing that came up was as a possible sign of cystic fibrosis called aquagenic wrinkling. DS is now 11 and had the heel prick test at birth plus has had no chest issues in his life, he does however have recurrent issues with his sinuses and has just recovered from a terrible sinus infection.
I know my GP will give me the look if I take him in about this but I have gotten myself into such a state. Attached is a picture of his hands for reference although it looked much worse in reality, though completely back to normal after ten-fifteen minutes.
Opinions/advice/reassurance would be greatly appreciated. I have to go to hospital tomorrow for an unrelated issue and I don't think my anxiety can get much higher!

It is absolutely untrue that CF is always picked up in childhood. My sister was diagnosed at 35. But she had years of recurrent lung infections and nearly died as a baby. She has no digestive issues - not everyone with CF does.

Thar said, I don't think this is CF OP (I'm a carrier). I think he just stayed too long in the shower. And I think your anxiety is rubbing off on him.

The poster is correct. People with cf have a higher concentration of salt in their sweat, to the point it’s noticeable when you kiss their forehead for example.

op, as others have said, it’s very unlikely to be cf without any other symptoms. It’s overwhelming likely to have been picked up by the heel prick test. Try not to jump to that conclusion

True, but the introduction of the test for cf in the heel prick test about 12 years ago means the chances of that happening are vastly reduced now

How long is "longish"?

10mins?
30mins?
60mins?

Assuming he was standing under the water, was the water running over his hands?

How hot does he have it? Can you stand the water at the same temperature?

I was pretty sure he'd had the heel prick test but I'm not sure now. One article I read says cystic fibrosis wasn't included in screening until mid 2011, DS was born in 2010.

She would have not been picked up in a heel prick test @FloydPepper. Do you have cf or are you a carrier?

15 minute to twenty minute shower, probably hot water but as I say, he came to me to show me and said it was hurting and I had never seen them that bad before.

My son is 12, born in UK and I remember CF being included in the prick test. I am certain.

Thanks, that's reassuring. Definitely nothing flagged after his heel prick test.

He may have missed it then.

id still try not to worry. I have a pretty good understanding of what cf looks like in 12 year olds, and whilst it’s true it can be diagnosed later, there would almost certainly be symptoms.

people with cf generally struggle to gain weight, will have lung infections, and (tmi sorry) digestive issues and smelly stools due to fat not being absorbed. People diagnosed later tend to have struggled with things like that.

id keep an eye on the hands, and yes if you feel it’s worth a dr chat then do that, but googling and jumping to a cf conclusion is very unlikely

According to the cystic fibrosis trust, the UK has been screening for CF on heel prick test since 2007. www.cysticfibrosis.org.uk/news/newborn-screening-for-cf-the-pioneers-behind-the-research

Parent of twins both with cf

Could you limit the time and temperature of his next few showers and see if that improves things?

He shouldn't be permanently ill with his sinuses though, I'd speak to the GP about that.

Thanks to all those that have been reassuring and understanding about this. On the surface I know it looks a bit crazy to be worrying about this but I was born with a disability have been terrified my entire life I would pass something on to my kids, and DS has been so unwell recently so very likely am letting 2 and 2 make 5 again but will definitely keep an eye on it. As I say it is unusual for him and the fact its causing pain is more unusual still.

You don't need to be using something new to become allergic to something. You can become allergic to anything at any point, even if you've used it for years. Not saying this is an allergy, just wanted to correct this common misperception.

Hope your sister is doing well by the way

youre correct about the digestive issues. Sounds like she’s pancreatic sufficient, which is good, but I guess contributed to the delayed diagnosis

Could you get him some milder shower products in case the chemicals are causing irritation? Baby shampoo isn't too bad and can be used to wash the body as well. Hand cream following the shower will help too.

Not all cf is picked up in a heel prick test @FloydPepper. My sister has one F508 and one really rare mutation. Very unlucky!

But symkevi has changed her life and I hope kaftrio will mean your twins will have a full and happy life. These new gene therapies are remarkable and will be an absolute game changer for this generation.

I'm waiting to see what my children decide to do about testing but it feels a lot less bleak than it did a few years ago.

As a parent of a CF child, , CF can be mild or severe. Symptoms start with either fatty poo or chest problems. Please don't worry, this really doesn't sound like CF.

Thank you

kaftrio is a game changer. It’s had an immediate impact on weight, appetite, energy levels etc. they still have a lot to contend with but it’s been the biggest single step in the right direction for them.

Thank you and I'm sorry if my post has come across as making light of CF or woefully misinformed. He's just been so unwell (particularly after having covid at Easter) and I'm in a constant state of anxiety about it

You weren’t making light of it, and being uninformed is fine. You know very little about these things until you have kids with it, then you become an expert.

My sister was telling me the other day that some of her friends are struggling with being well. After a life of being ill, where your life is defined by regular hospital admissions, to suddenly have that stripped away is mentally quite difficult.

I don't know how old your twins are but I hope they won't have to go through that. My sister hasn't been an inpatient for over a year and has stopped nearly all her other meds now. She's normally in hospital for about 3 months every year.

It's an extraordinary breakthrough. And I'm sure it's not very exciting to most people but I think it's just incredible.

I have CF, I was diagnosed when I was 12. I have no digestive issues, the symptom that got me diagnosed was coughing at night.

I get wrinkly hands like this, so it's not impossible that he has CF. The licking test someone suggested is actually true. On hot days you can see a layer of salt on my skin and DH has often said I taste salty. Diagnosis was via a sweat test, measuring salt in my sweat.

DD, born in 2007 had a prick test that included CF. So hopefully for your DS, it would been picked up previously.

Do you have any history in the family of people dying young, very skinny or with lung issues? There are usually distant relatives with some of these symptoms somewhere in the family history.

Having said all this, I think it's much more probable that your DS was in the shower a bit too long, rather than him turning out to have a mild case of CF.

I hope I haven't scared you but I just wanted to say, you aren't crazy to jump to this conclusion.

My father died before I was born and I know next to nothing about him or his side of my family. From the other sides aside from my (rare and unrelated disability) there is nothing like cf. However DS is very thin which is another thing I worry about.