dd being tested for cystic fibrosis

[Boco]

I had a call from the hospital today asking me to bring dd for sweat test and more bloods as the consultant thinks she may have cystic fibrosis. She's 4 and has had pneumonia 5 times in the past few months.

They mentioned this in passing last October, but I assumed they'd dismissed it. We saw the consultant again last week and he mentioned that he wanted to do tests quickly, but wasn't really expecting this.

Feel rather panicked by the idea know nothing about the condition but assumed it was hereditary.

Has anyone else had testing for this? I probably shouldnt' even think about this until Tuesday, but hard not to.

Crikey, I've only just seen this, so it was a bit like one of those Mini-drama adverts for me - over in minutes, but PHEW! Really glad for you that she doesn't have CF! Must have been terribly tough waiting for test results. Wishing your DD lots of good health in the future

It must be a great relief - BUT having had to go through a sweat test with my dd2 it gives you a little insight into CF, and will mark it out as a special 'good cause' in years to come.

Very pleased to hear it.

great news. i am so pleased for you!

Great news boco x x x

REally glad it's good news boco - fantastic!

Thank heavens BOco. Rooting for you!

brill news!

fantastic!

And offering to test the old lady was v.kind - she sounds so sweet!

Boco DS1 was also tested for specific antibodies etc and in the end had to have all his childhood immunisation again, which has made an amazing difference. For the first time since his bith (touch wood) we have not had a single winter addmitance in to hospital, no steriod use for 6 months, in fact no medications at all.

Great news, Boco.

That's interesting MadHouse - Consultant did mention some vaccinations. So glad it's worked for your ds. DD overdue for her pre-school boosters but I've not felt she's been well enough for them in the past couple of months so keep putting it off.

Hello Tnog

Fantastic news, Boco. You must be so relieved.

This morning I've got a copy of the letter that the Consultant has sent to my GP. Once again I'm poised over google!

He says in the letter that dd has recurrent pneumonia with possible reversal airways disease and horner's syndrome.

Does anyone know what reversal airways disease is?

And he's put the 'plan' is to test immune function including vaccine responses and immunoglobulins, to reconsider Horner's diagnosis, and consider permanent prophylactic antibiotics.

He ends by saying that he thinks that there IS an underlying cause.

I don't really know what the underlying causes are that are left though, has anyone else been here?

When can you see your GP? And is your GP helpful? Usually knowing facts is more helpful than google, as you know. My dd2 who was tested for cf has been prone to a lymph problem which comes and goes, and makes no difference to her everyday life. Take care.

It does say in this letter that she has 'cervical axillary and inguinal shotty lymph nodes' and Harrison's sulcus. Whatever that means.

But yes you're right, I need to get gp to explain. Yes, he's ok. Will call.

In my dd2's case she has a thing (scientific term!) called mesenteric adenitis, occasionally. Her lymph nodes in her lower abdomen swell in response to infection, like tonsilitis. It makes her very sick, and happens if she has a cold/flu. It is also very like appendicitis in symptoms. But it hardly ever happens (3 times, she is 12). Although it may have been there when she was 15 months, had pneumonia and sickness - ant the sweat test. Maybe your dd has a similar constitution?