What's it like to have a child with CFS/ME

There is no easy answers to this because each Child / Young Person is different.

They all behave differently to the illness.

Also your attitude makes a definite difference to how they respond and cope.

My Story  

I am a mother of 2 Children/Young People

Helen and Leanne,

Who have and are suffering with this dreadful illness which is causing untold disability and misery to them and deeply affecting our family.

Right so that’s the heavy stuff over with yes!

It’s all doom and gloom

There’s no way out!

WRONG!!

Why?

Our children are our most precious possessions we fight tooth and nail to protect them and when we see something strike them down we need answers.

Life’s not like that though is it?

Sometimes it stalks us and when you least expect it, it strikes out

Now, adults are expected to deal with it,

But what if you are a Child or Young Person?

They need our help

How did it start?

In April 2002 one of my daughter’s Leanne became ill with a chest infection, nothing new there, she suffered chest infections all her life, so off to the doctors to get the medicine’s - antibiotics - and spoon feed her while she lay on the sofa poorly.

Three weeks later, she went back to school still feeling washed out but HEY - hat’s what an infection does - wears you out - so I told her she would be better soon.

The finer weather arrived because we were into May now and she seemed to have picked up a little but still complained that her chest was hurting her, I said that because she was Asthmatic and it was lingering on.

June came and went and school holidays were on there way, when both girls (Twins) Leanne and Katie were offered by school an overnight trip to one of the teacher’s farms.

Both girls were excited and wanted to go, so I said yes and off they went they stayed overnight.

When they came back Katie was full of how the trip had been, Leanne was Poorly, she could barely stand and her breathing was really laboured, straight away I thought chest infection this was around the 16th July 2002.

Leanne informed me that she, Katie and another girl had slept in a washed out Horse Box but that she could still see horse’s hair and that it stunk and it made her chest feel really tight.

Off to the doctors again, this time he said no infection must just be a reaction and it would settle, it did not settle in fact she got worse, she was hardly able to move, passed out on me a few times now you start to WORRY

What dreadful illness is affecting her?

I went back to the doctors and said 'She’s getting no better',

'GIVE IT TIME!' he said

A week later after having to spoon feed her in a darkened room, assist her to the toilet, hold her hand while she tried to pass water and the pain was screaming from every orifice, I went back to the doctor.

The Doctor first said “Do you think she’s depressed”

'No I think she’s ill '

Next he said 'Do you think she is being bullied at school and is trying to avoid it? '

'No I think she’s ill '

'Well I have listened to her chest and I can’t hear any problem there, so there can’t be that much wrong with her!!'

Two days later went to see another Doctor in the practice, explained all the symptoms again. He said 'We should do a urine sample to check for diabetes', that made more sense to me, so did the check

Nothing abnormal showed.

I'm getting scared

By this time I was accessing the internet looking for information as to why my child was so poorly and I appeared to be the only one concerned. Things progressed from there, Leanne became even more Poorly sleeping Day and Night I admit I was Scared, I thought she has a major problem and they are missing it.

Then when Leanne was awake she said that she could not see, had blinding headaches and could not pass water no matter what I tried. That was enough for me, I took her straight to accident and emergency and said I was not leaving until a consultant saw her.

Leanne was put onto the children’s ward and kept overnight, the consultant said that he felt she may have a virus of some description and he would run some tests and speak with the GP’s.

To be fair The Consultant did everything right, he ran tests gave her pain relief and said that there way no more he could do but would follow her up in clinic.

This was now August, he saw us about 10 days later by which time I had heard and read about CFS/ME. I Never knew anything about it before Leanne got sick, so went to see the Consultant armed with my Information and sat with him describing Leanne because she felt too ill to do it.

He asked me 'What did I think it was'?

I said one of four things

1. Tumour

2. M.S.

3. M.E.

4. Something else

He said I don’t think it’s a Tumour, she would show other signs and constant sickness, He didn’t think it was M.S. she was not old enough, I said in America they have websites for kids with MS so why should it be different here? he said he would have to disagree,

I said what about ME

he said 'to be honest you probably know more than me about it, so I would like to reserve judgement for the time being'.

I said if you don’t think it’s any of them then what’s wrong with her?

He said 'I don’t know. Nothing has shown up on any of the tests done so far.'

So I said 'What now then?'and he asked 'What would I like to see being done', I said' I would like a Brain Scan to rule out tumour or MS' and he agreed to start with that and see were we go from there.

Leanne had the brain scan and nothing showed up, she continued to have problems all indicating ME, her eyesight was still bad, she went to under 6 stone from about 7.5 stone, she could barely keep anything down and everyday life was a struggle for her.

Her struggle continued for over 3 years

This daily struggle with life continued up until January 2006. What has made the difference? you may well ask.

We discovered quinine which is a tablet that helps in Malaria cases.

Leanne started taking it and it decreased her pain levels to a manageable amount and by decreasing the pain it made her want to move more. Although the tiredness and fatigue levels influence her day she is more up to life and thinks about a future, which prior to taking the quinine would never have been on the agenda.

This all started for Leanne over four years ago, so where are we today?

Leanne has developed a strong sense of character coming from when she was so ill, she still is so severely affected that without assistance from another adult she cannot:

completely wash herself

prepare a cooked meal

shop

go for a gentle walk.

What role have the professionals played?

Leanne’s Consultants have been excellent, supported us all the way.

Our GP`s have been less than sympathetic.

We have had to fight to get her Disability Living Allowance (DLA),

I ended up going to the DLA Commissioners and we won.

To get her the necessary support I am still fighting with Social Services and I refuse to give up. I have now taken it to the Ombudsman.

The Education Department have been excellent, they have tried to help Leanne every step of the way, with home tuition and have provided the necessary support to enable her to try to access courses outside of the home.

Where do I see Leanne’s future?

As a parent I want only for her to be Happy

But I am now more hopeful, If she maintains her improvement and pace’s herself and continues along similar lines and try’s not to over do it then I think over several years she could work towards being well enough for a 'sitting down career'

But we will take each day as it comes and be thankful for tomorrow.

The last 4 years have been a nightmare not just for Leanne but the whole of the family that surrounds us, which is why it is important to get your Child or Young Person to be involved with other Young People who also have this illness.

It show’s them they are not alone and there is a support network out there.

What about Helen?

You may remember at the beginning of my story I said I had two daughters with this illness, my other daughter Helen is now 22 she has had the illness for the last 9 years, so it does not look like it’s going to be leaving her anytime soon, she was not as ill as Leanne, but when she get a chest infection and goes down they some of Leanne’s major symptoms kicks in.

Helen has always be a law unto herself and she ignores the illness until she can ignore it no more then gets laid up for about 1-2 weeks feeling really poorly and then starts the cycle all over again.

I, as a parent cannot help her, she wants to do it her way

but I know deep down, that in later life she will pay and there is nothing I can do about it.

And Leanne's twin Katie?

If you also remember I said Leanne is a twin, well in this last year her twin sister has started showing signs of the illness, again nothing like Leanne just little glimpses, like extreme tiredness after college or becoming excessive hot or cold, I am keeping a watchful eye.

What have I learnt from all this:

Expect the unexpected

don't expect that because there is an improvement in the symptoms that it will continue 9 times out of 10 it won’t.

Always fight for what you know to be true

Even when others are against you!

Use you’re most valuable resource which is teaming up with others who like you!

People who care and understand what you are going through

Together we can make a difference.

Take Care and Regards, Margaret Dyas.

November 2006.