Struggling with poorly children

[strawberrycornetto]

I feel a bit useless for writing this having just read twinmam's post. I hope you'll forgive me and offer some support or guidance anyway.

My DS who is 16 months is undergoing tests for cystic fibrosis. He has had 4 sweat tests but none have collected enough sweat so we are now moving on to genetic testing. He's ill with chest problems almost all of the time.

In May, I got quite depressed with the combination of his illnesses and the uncertainty and work stress. The doctor gave me antidepressants which seemed to be helping. We went on holiday for two weeks and he was well.

Then we came back. He got a chest infection and was on antibiotics and ventolin for 2 weeks. Immediately he got better, my DD who is 4 got a bad case of tonsillitis. She was ill for a week and is still on antibiotics. She has been better since last wednesday. Yesterday, DS started showing signs of another chest infection, today he is coughing lots and has a temperature again.

I am so tired and worried and stressed and it seems never ending. I seem to be no closer to any answers and I am finding it impossible to cope with a demanding job when I am always worrying about my LOs being so sick.

If anyone has DC with chronic health issues, how do you cope? DH won't acknowledge there is anything wrong, so he has an innocent explanation for everything and he implies that I am neurotic/a hypochondriac for thinking something is wrong. But the consultant thought he should be tested and it is not normal for a 16 month old to have had 4 chest infections, 2 lots of bronchiolitis and 2 lots of pneumonia in 8 months.

[Elibean]

OMG, Strawberry, you have had a huge amount to deal with - you have every right to ask for support. I'm so sorry you haven't had any answers yet re the CF, no wonder you've been depressed.

My dd has pretty much outgrown/resolved the worst of her chronic problems through time and surgery back in January, but her first two winters - and most of the summers - were slightly similar to yours. Its very, very wearing.

First of all, as you know already, you need a clear diagnosis so you can either move on to dealing with an underlying issue or have your mind at rest. Is the consultant testing for CF alone, or is he considering asthma or anything else as contributing factor? Bronchiolitis can leave LOs with a predisposition to chest infections/asthma, but I assume they've thought of that.

Soudns as though your 'well' child being sick recently has been a bit of a final straw, not to mention dh not seeming to understand (I wonder if he's frightened himself...dh does that 'its all fine' stuff when he's scared). You must be exhausted.

Any help available? Can you take some time off work?

[strawberrycornetto]

Thanks Elibean. Its good to hear that your DD outgrew these types of problems. I know that DH is scared and doesn't want to admit it but it means he doesn't really give me the support I need. Am just so tired. He went to bed with a temperature and ibruprofen tonight and I don't know what to expect tomorrow. I think work is running out of what little sympathy they had.

So tired....

[Elibean]

You poor love, hope you get a reasonable night. for you that you're not getting more support, even if dh isn't worried about underlying health issues for ds, giving you a rest/break seems in order!

When do you expect more feedback from the paediatricians? I would imagine a clearer picture from medics would help on the dh front, and the work front, as well as for your own peace of mind/clarity...

Wish I could help, xxx

[morocco]

it is a struggle and I often used to wonder if people thought I was neurotic/making it up even though there was no reason to think that. I don't know what advice to offer except to take things day by day and try not to think too far ahead or 'what if...' but of course that's easy to say and harder to do. hope it helps just to know other people react the same way. having a chronically ill child in the family can put a great deal of stress on you all and on your relationship. I felt like we bounced from one thing to the next with no time to breathe and no idea what was coming next. I think I was very depressed for a long time but never did anything about it. We have been lucky - ds1 has had a long remission and no hospital admissions for ages and ages now so lots of time to chill and get back to normal. make time for yourself and get a massage/haircut/go shopping - whatever floats your boat. you need to take care of you so that you can take care of your ds. do you have a 'team' around you of people who are supportive and understanding and who you can talk to about your worries? not everyone is good at this so gather those that are close to you.

hang on in there and take things a day at a time

[strawberrycornetto]

Thanks Elibean and Morocco. It is very tough. DS was still ill this morning and trip to doctors resulted in his 9th lot of antibiotics since November. This time for an ear infection but the doctor said his chest sounded full of fluid, although not actually crackling. Hopefully the antibiotics will head it off.

I am just finding it so tough to cope with work really. I'm off sick today but I need to go back tomorrow and I can't concentrate when he is so poorly. Its becoming a nightmare. Am thinking of asking for some parental leave but there is no guarantee I will get any answers before I'd have to go back. Also thinking about asking GP to sign me off, which for me would be absolutely a last resort, but I am starting to feel at that stage.

Elibean, I am waiting to hear back from the consultant to confirm that the sweat test didn't work (although we know that from the technician already) and to find out what he wants to do next. Since DS has had two further chest infections in the 7 weeks since we last saw him, I expect to move on to the genetic test but I'm not sure what he is going to recommend in the meantime.

I did get an early night last night but I still feel worn out with it all. Poor DS is so miserable today, I have never seen him seem so unhappy, even when he was in hospital with pneumonia. It breaks my heart to see him in pain and not to be able to help him.

[Elibean]

Poor little love, ear infections are painful so I'm sure thats why he's so miserable - hopefully the ABs will kick in fast and he will brighten up accordingly.

tbh, I think getting GP to sign you off (if you can't get parental leave - not too sure what that is, but sounds good!) might be a good idea. You do sound genuinely exhuasted, you're already being treated for depression, and you have a sick child. I would think a sensible GP would encourage time off work at this point, and its no failure on your part (guessing, because you said 'last resort'), quite the opposite. You must take care of you, so you can take care of them!

Hope the consultant gets back to you fast, and moves things on - waiting is always hard. xxx

[strawberrycornetto]

Thanks Elibean. Am going to discuss time off with DH tonight and see what he thinks.

[morocco]

also agree a bit of time off from work would help - I'm sure your GP would be very sympathetic. mine is wonderful and so understanding.