Genetic chest problems?

[Norton]

DD (12) has always had asthma

But it has been a bit bothersome recently he alongside some other health issues so we went off to the local hospital

The consultant took quiet a detailed history of DH who also has quite complex chest problems & he has suggested that DD has tests to see if she has some sort of genetic chest problem.

If she has if might mean that DH's problems are genetic too (obviously) and that might make his treatment a little more straight forward as these sort of problems wouldn't be easily diagnosed in a 50yo

I am a bit & & upset by it all (again obviously)

There is another option & that is that DH has passed quite a nasty bug on to DD which would mean years of treatment for her

I am ??? I really don't have words to explain how I feel

I have namechanged as I don't want DD to read this & she shares my PC

Well, don't get too worried just yet, at least you will learn more in time, once you know more there will probably be also advice how to go about it all.
Hard to shift bugs might mean that her immunity is lowish, maybe you can take some steps at home to make sure she has a superhealthy diet.

Oh Norton sounds like a good news/bad news type of appointment. Hope you don't have to wait too long to find out.

But it's SCARY - I have coped with DH being ill (for decades nearly) but that DD might be ill too is beyond comprehension

Yes, very scary. But better to know now, in terms of treatment. You probably want to pick her up and run away I expect

It was quite funny the consultant said if he had seen DH when DH had been 12 he could probably fixed him & DD laughed

She said the Dr wasn't old enough.....he asked how old DH was & when I said 57 he said not only that he wasn't a dr when DH was 12 but that he wasn't born either

I am struggling to find much good news - I guess a better diagnosis for DH is good but for DD to be ill too....

No - you are right; I could have spent years in the system before they connected their symptoms

I think I was just in shock yesterday - I now need to be careful that my attitude to DD & risk doesn't change - just because she 'might' be iller than I originally thought doesn't mean she should miss out on anything she already does or is planning to do

& I agree about the school bit

Thank you all for listening & calming me down a bit

Glad you feel a bit more positive today.

She's still the same dd she was before you had this bit of news. It just her chest issues may have a different name now and different (but probably better) treatment.

Are school still being a PITA?

No...at least now it is an official 'situation' they are bending over backwards

DD is a bit calmer and has said it would be good if 'fixing' her might 'fix' daddy too; but she would rather be well. Her chest is hurting atm (possibly due to the change in temp as we just got back from holiday or possibly anxiety) & the steroids don't seem to have a great effect - not like last time

I have arranged for some counselling as I need to vent a bit

I am of course over reacting and being an over protective mother - & I think a large part of the problem was that I was anticipating the Hospital telling me that - I was very shocked that they didn't

dd is struggling with the cold. She basically didn't get out of bed Tues/Wed.

And you're certainly neither over-reacting or overprotective. More anxious I should think. It's a difficult age for dd too to be suddenly going from having asthma (which whilst it can be v serious is fairly common and well understood) to something a whole lot less common and more unusual.

You see DD isn't anything like that bad - she has just had a bad run, recently

DH was well for years (until 40) before becoming ill

I don't see how either of them fit (admittedly I don't know much) the profile for the first test they are doing

Sorry your DD is having a hard time atm - it must be miserable to be stuck in when the snow looks so lovely outside

I have been trying to get her some counselling since the summer - the nurse is OK but often unavailable

They are starting with a sweat test & some comprehensive bloods they have also tested for mycobacterium (which DH may have)

I know I just keep having a little gibber in the corner everyso often

hi Norton

where abouts are you ? .If your anywhere near London I would reccomend the Brompton.I have a dd who is almost 7 who has genetic chest problem known as A1AD (Alpha 1-antitrypsin deficiency.This is picked up in a blood test

as well as Bronchiectasis.this tends to be confimed by ct and a broncoschopy also ad din immune issues she has a triple whammy but the fact they have picked up that your dd might have something more than asthma is good rather than wait till she is in her 20s or 30s is good

And cry away i still have bad days and one thing wil warn you to prepare yourselfdh for is guilt i hcarried for long time as she inherited the A1Ad from me i did not know had it either but am carrier .the other 2 were just bad luck and so is anything else .It is not your falt you are doing everything that is needed

they might also look if she is frowing any bugs as well aspergillus which is a spore that grows in the lungs that needs long treatment with antibiotics

DH is at Papworth & DD has started off at Norfolk & Norwich

Who knows who will end up with her - I guess it depends upon her diagnosis whether she goes there or he moves here or they each stay where they are I guess.

I feel quite down again tonight I was trying to second guess whether I would let her walk to & from a party in all the snow; would I have let her last week, should I let her today

It's very hard not to panic & over react

it gets easier when dd was dx i wanted to wrap her in cotton wool she was 2 1/2 and had spent most time in hospital now on regular antibiotics and physio lot stronger

though i do admit to still worrying when she has a cold or a fever .ok Papworths good to

Let her do it just tell her to wrap up warm .DD has been playing in the snow .

Over time i found it best way of dealing is to let her do all the normal things but to be on the ball once she starts becoming ill so something someone might wait see 48 hrs in case is viral .Im at the drs same day

That is what we do with DH - it seems so sad we now have to do it with DD

Of course we could be panicking un-necessarily but it is so scary the Dr picked up on lots of little things which we had never thought of as major issues

She did half a day before the snow hit

I don't think she has told them anything

TBH that is part of the problem - she was dressed for a party yesterday in leggings t-shirt with a cotton scarf (no coat/socks/boots etc). Whether ill or not I wouldn't allow that!!

I just asked

'I said it was my asthma'
'They don't care'
'Do I have to go back?'

'They are NOT having my blood'