Who else has a chronically ill child? How do you cope with the emotional fallout?

[emkana]

I find that I'm on a permanent rollercoaster of emotions. Devastated when ds's chest gets worse, elated when he gets better. It really affects me big time, and I wish it didn't so much. Does anybody else feel the same way?

CF has been ruled out for ds, he has had a sweat test done twice.

The bronchoscopy is to look if there's a different reason.

Thanks for describing what it is like Charley. Can't say I'm looking forward to it...

What was the diagnosis for your ds before cf and was he on any medication.
Ds is on seritide twice a day, ventolin every 4 hours, atrovent 3 times a day, singular, and azithromicin but still his chest gets bad.

alibobins - there wasn't a really definate diagnosis before cf basicly the short story is he has always had bad digestive problems and used to pass between 15-20 stools a day which were neon orange greese that smelt so bad i would be sick when changing him, they sugested a milk intolerence and i cut milk from his diet for 2 yrs with no sucsess.
Then when he was 1 he got a cold which developed into a chest infection and he got a bad cough, he still had the cough a yr later and it was getting very bad and making him short of breath, i took him to the g.p every month to be told that his chest was fine.
Christmas 06 comes and ds wakes up with a rash of purple no blanching spots and is very drowsy and i can't keep him awake so i call and ambulance and he's rushed to resus with ''meningutus'' while he was in there one dr noticed his wheeze and asked for a chest x-ray which showed he had a severly collapsed lung and bad infection and they tested him there and then after hearing his history.

Yes that really is the short version!

They didn't pick it up sooner becuase DS is a chubby thing and cf children are usually painfully thin and tiny.

Why do you ask is your child cf or chronicaly ill?

Ds2 has Crohn's and I haven't really given any thought to the emotional fallout until I read your thread title.

Having spent last year seeing various consultants trying to find out what was wrong because his symptoms were not typical of Crohn's to begin with, I found that I finally relaxed after the diagnosis.

When I look back at last year it seems horrendous now but at the time I think I went into 'automatic' mode. It wasn't an option not to cope.

He's in remission now after treatment but each day I think about when he might have a flare-up. There are daily enquiries about bowel movements and joint pains and each timne he has a pain I'm thinking "oh god this is it". It has become a way of life now. Basically I worry every day but that feeling has become a way of life for me and I never thought of it as strange before. It's just that life has changed.

Charley- Ds is always ill with his chest and is on quite alot of medication but not much better his medication is listed in a previous post. Cf has always been in the back of my thoughts but I thought it would have been picked up by now.
Ds has got digestive problems but that is down to his various food allergies.
Sorry about your ds

Ds is really unwell again atm in spite of a course of strong AB's lasting six days so far.

My mood is accordingly.

Poor you and ds ds is the same and is on extra abs and nebulisers as well this time
I have actually been in tears this morning

Oh alibobbins, it's so hard isn't it?

Is he having ab's on top of the azithromycin, or instead of them?

I have to go out now, will check back later how you and ds are getting on.

No just abs and prednisolone and to start azithromycin again on monday
At least you are getting more investigation we seem to have come to a standstill.
It just seems that they keep kiving him more and more medication with no answers.