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Original poster

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

34 replies

emkana · 09/05/2007 19:35

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?

OP posts:

Pixiefish · 09/05/2007 19:37

DD has chronic excema- don't know if that counts but I know about the ups and the downs

tribpot · 09/05/2007 19:39

em - as you know, I do chronically ill adults, not children. I know for a fact I couldn't cope if ds were - god forbid - to become chronically ill too, so hats off to you, lady. Beyond that, do you have access to local carers' services specifically for parents? We have quite a lot of that round here.

geekgrrl · 09/05/2007 19:44

how is your ds emkana? do you have a diagnosis yet?
Dd2 was chronically ill for the first 4 years of her life and tbh it just dominated my life completely, so no advice on coping with it I'm afraid - I didn't cope v. well either. I just lived immune deficiency really. My whole life revolved around it. What else can you do?

Original poster

emkana · 09/05/2007 19:46

Where would I look for one of those?

OP posts:

Original poster

emkana · 09/05/2007 19:46

Ds not doing very well with his chest atm.
no diagnosis as yet.

I just feel so sorry for the dd's sometimes because my mood changes so much and it affects them.

OP posts:

FioFio · 09/05/2007 19:48

This reply has been deleted

Message withdrawn

tubismybub · 09/05/2007 19:49

if you go to carersuk.org you will be able to see if there is a carer's association in your area

alibobins · 09/05/2007 19:51

I get like this with ds who's not well at the moment. I said to gp last night that it gets me down he went to bed a happy healthy little boy and woke up not well. I seem to take it out on dp

rabbitrabbit · 09/05/2007 19:56

Hi emkana, apologies as I don't really know your story but my ds has been ill for the last 18mths (he's 4). We're still waiting for a diagnosis. He's been suffering from fatigue, nosebleeds, has a large lump in the back of his throat and has an exzyme, called LDH, showing in elevated levels in his blood. We go back tomorrow for yet another blood test. The last thing he said tonight before he went to sleep was "I'll be a really brave boy tomorrow mum."

I had to fight so hard with the GP to even get this far that I feel like I might be on the brink of having a stress heart attack any day
Ds gets so tired that we've had to postpone reception and now he'll start, fingers crossed, in year one. All very sad.

I don't really know how we've coped; you just do don't you. When ds is full of energy and we're doing things that we used to do before all this we're all happy and so glad to see the "old" ds back, and then we'll see him at the end of the day exhausted with black circles under his eyes and it hits you again that something is wrong, but no-one seems to know what.

It effects me hugely also so I do know how you feel and I'm sending you a large hug (and a larger G&T)

Saggarmakersbottomknocker · 09/05/2007 19:58

It's tough em. It's gets better, then it gets tough again. You do just get on with it, what choice is there?

I'm sorry that you are feeling it at the moment. When dd was about a year old I think that was my lowest point and I did have a bit of a breakdown really. Don't let it get that far; try to find some support locally if you can, even if it's only with the practical stuff. I had a student from my local college do her placement with me. Somehow because I was under less pressure with the day to day problems it helped me cope with the emotional side of it.

How is your dh/dp with it all - is he supportive?

Original poster

emkana · 09/05/2007 20:02

He's doing his best but he has very much a "head in the sand" mentality.

Rabbitrabbit, have a hug back, sounds like you're having a very hard time.

Thanks for all your posts. Will look at the carers thing.

alibobins, what are they doing treatment-wise with your ds atm?
Ds is going to have a bronchoscopy soon.

OP posts:

Saggarmakersbottomknocker · 09/05/2007 20:12

Hmmm - ostrich syndrome - it's very common among the male species.

rabbitrabbit · 09/05/2007 20:13

Dh the same.
"Let's not worry about that, it might never happen"
AArrrgggghhhhhhhhhh

Cadmum · 09/05/2007 20:21

emkana: I was about to reply until I saw that that this thread was yours and I almost feel like a fraud... My heart goes out to you.

Our DS2 is much healthier than your son but it is really hard when he goes from virus to virus and bacterial infection to bacterial infection and there are simply no answers... He was unable to stay in school this year as he just could not cope but every time he seems healthy we almost forget how unwell he can be.

alibobins · 09/05/2007 21:23

At hosp on 23rd of this month so not sure what they are going to do next was hoping for better results with the azitromycin but ds has had a few problems still and at the moment he's got no voice and a bad chest so hes on other abs aswell.

I think he is going to have a repeat cystic fibrosis test has the only one he has had was the heel prick at birth.

The consultant is just worried they may have over looked a lung problem but didn't mention what he just said some only show up the older the children get.

I just find that some days i het really angry and feel patronised by all the people that keep telling me I cope so well but what else can I do I cant just walk away

Original poster

emkana · 09/05/2007 23:40

OP posts:

Original poster

emkana · 10/05/2007 10:07

bump

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alibobins · 10/05/2007 10:08

Hows Ds this morning

Original poster

emkana · 10/05/2007 10:11

not great coughing lots and wheezing

Consultant has said to stop the azithromycin now and go on other long term AB's

How is your ds?

OP posts:

alibobins · 10/05/2007 10:46

Had quite a bad night but seems a bit better he had to go on nebuliser this morning
Whats the other antibiotic?
What they doing a bronchoscopy for have they said what they are looking for?

Original poster

emkana · 10/05/2007 19:20

He's going to alternate between Cefixime and Trimethoprim.

The bronchoscopy is one of a series of tests they're doing to find a cause for ds's frequent chest problems. I don't know any more than that.

What tests have been done for your ds?

OP posts:

alibobins · 10/05/2007 20:49

A scan thing and numerous x-rays and a meal thing where they watched fluid go down to see if it was getting in his lungs.
He has had alot of mucus tests when he's got an infection to see what type it is but nothing else.
Its beginning to effect him when he's playing he can't keep up with all his little friends
When i google symptoms it always points to CF but hey I'm not a doctor.

Charleesunnysunsun · 10/05/2007 20:59

Emkana i don't know your story but i have a DS with Cystic Fibrosis and it's a relitvley recent diagnosis, luckily (if you can call it that) i suspected a long, long time ago that he had it so when he was diagnosed i wasn't shocked at all.
I try to be as proacrive as i can and raise money for the supporting charities and do reasearch into the wways i can help DS, i try to keep busy and not think about the worst case senario, it's really hard but we try and be positive that by the time he gets bad a cure may have been found or new treatments available. (hes only 2)

When his chest gets bad and were all bundled off to the hospital for 2 weeks i think to myself that, yes its a pita and yes we all hate it but the dr's know what they are doing and they are treating him as well as they can to make his life as long and as healthy as possible.

We try to keep things normal and i try to be basicly honest with his toddler questions he asks which will always be our policy, but unfortunatley i have days when i think 'Oh christ' i cannot do this anymore but with the support of family and friends i get past it and wake up feeling ready to fight for him again.

God bless xx

Charleesunnysunsun · 10/05/2007 21:01

Also.......

Ds had his bronchoscopy last hosp visit and they put him to sleep and looked inside his lungs with a tiny fiber optic camera which went down his wind pipe, whilst they are there they look for scaring, inflamation and any secretions that may be there. They also flush the lungs out with fluid and then suck the water back out to test in for infections ect.
It was so quick he was out and back again within about 30 mins.

Charleesunnysunsun · 10/05/2007 21:03

Emkana, have they not sweat tested your ds? Thats surley the easiest way to rule out cf?
We had such a battle getting DS diagnosed he had blood tests and all sorts and a long course of cefalexain and azithromiycin.
Does your ds have digestive problems as well?

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