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HELP 14 year old with ME

(8 Posts)
Travelledtheworld Mon 03-Nov-14 11:21:06

Anyone any experience of dealing with a teenager with ME?

Friends daughter has been very ill with a second attack of ME.
Hospitalised for a week. discharged last week but completely exhausted and has limited use of her hands and legs. Needs assistance walkimg and going to the toilet. The whole family are in turmoil with granny helping out when Mum has to go to work.

She will be out of school for a while.

What support services are available to them ?
What's the best way to deal with school ?

Advice please.
Will also post in health.

PositiveAttitude Mon 03-Nov-14 21:42:43

Hi,

My daughter became ill with severe CFS/ME the day after her 14th birthday. This was the reason I joined Mumsnet as there was a really supportive thread going, but that was 6 years ago now. Here is a link to one of the old threads, but it is old, but it might give you some encouragement: www.mumsnet.com/Talk/childrens_health/906011-Support-thread-for-mums-caring-for-child-teenager-with-CFS

DD3 was unable to attend year 10 or 11 at school, she was unable to stand at all for a year and was totally bed/sofa bound. Life was not brilliant for her, but she has gradually got better. She is now 20 years old and is married and has a young baby. On the whole she manages her illness well now and can live mostly a "normal" life, but she has to watch her energy levels still.

The one piece of advice I would give is to stay positive. There is light at the end of a tunnel. I will happily answer any questions, sorry, I am feeling a bit exhausted myself tonight after a llloooooooooong day at work, so cant really typw a load now, but I didnt want to leave your message unanswered.

PositiveAttitude Mon 03-Nov-14 21:47:39

Does your friend's daughter have a good consultant? Our consultant went into the school and spoke with the staff. In our situation the school was a nightmare and the best thing we did was remove her from the school (after many months of arguing with them to get them to help her and trying to get them to understand her illness) Within a few days of us removing DD3 from school the pressure was off and we were all so much more relaxed. It did mean that she did not do her exams at the time that her peers, but looking at the bigger picture it was by far the best thing we did. It is not set in stone that everyone has to do GCSE at the age of 16.

PositiveAttitude Mon 03-Nov-14 21:53:57

Sorry, me again!! blush I also had to work and after a bit of a fight to get some help we did get a carer coming into the home while I was at work, which was brilliant. I could work still, which kept me sane really!! I had never thought I would be at home with a teenager caring for her 24/7.

Has your friend seen a specialist consultant. We were seen by Dr Crawley from Bath. She came to visit us at home and she gave some brilliant support and advise. Have a look at the NICE guidelines here: www.nice.org.uk/guidance/cg53/resources/cfsme-guideline-consultation-full-guideline2

Travelledtheworld Mon 03-Nov-14 22:20:13

Thanks Positive.
F's D is Year 10
I gave friend the same advice about school.

No, she has not seen a specialist consultant. Just a Pediatrician at local hospital. The hospital sort of said " you can go now " and sent her home last week and that seemed to be it. The family really are at the beginning of a long journey and don't know where to turn for help and support.

I have advised Friend to speak to her own GP and to District nurses to get practical help with things like wheelchair. They really need social services referral. How did you manage to get access to carers ?

We are actually only 30 minutes drive from Bath. I wonder if Dr Crawley is still around ?

Travelledtheworld Mon 03-Nov-14 22:25:23

Very helpful advice thanks.

PositiveAttitude Wed 05-Nov-14 19:23:34

Hi,

I have done a bit of googling and it does seem that Dr Esther Crawley is still around and works still at Bath. I would try to get a referral to her. It is worth having a look at some of her articles online and getting some insight into this illness. Another fantastic resource is AYME. They were my absolute lifesavers! Look them up online. Their helpline was so useful for me.

As for the carers, it was a battle!!! Our pediatrician was brilliant and pushed SS to help us out, but it was still a struggle. If your friend can get just one helpful, understanding, knowledgeable proffessional onside, then I suggest use them as much as possible. AYME will be able to point you in the right direction.

Thanks for your message too. Could you get your friend to join here? Ask anything you want to, either here or Pm me. smile

Travelledtheworld Wed 05-Nov-14 20:45:00

Thanks. I passed the details of the team at Bath on to my friend and the Granny too ! They were very greatful.
Will also suggest they talk to AYME.

It's been a fascinating learning journey for me too.

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