12 year old son housebound with ME.

[user1490267822]

Does anyone out there have a child with ME that is so affected by their illness they are housebound and too exhausted to even have friends visit for 5 minutes?

Hi there...I don't any more...but I did.my daughter was diagnosed when she was 7, off school for nearly 3 years...returned back for 15 mins a day.... now at 15 is full time at school on rack for GCSEs. Telling you this so you know there is hope.

I am happy to answer questions if you have any? It was a v thought slog. I would suggest you contact AYME if you have not done so already and loo up the work of Dr Ester Crawley

Please look after yourself as well....it is v hard work looking after everyone.

Many thanks for taking the time to respond. Good to know there is hope. Hope you're daughter does well in her GCSEs.

My ds 13 also has it. Diagnosed at 2- the youngest in our region. He hasnt been too bad until secondary school. Year 8 and now struggling. I do know a bit of 16 who has only managed an hour a week at school the past year. Hoping time and rest and good diet stops things getting worse for ds. It's a mine field. .

dd3 had it here from the age of 14. She is now 22 and has been able to have a near normal life for the past 3 years. At her worst she didnt go out of the house for a year and we had to lift her from her bed to the sofa, feed her, wash her and do everything for her.

Have you been seen by a specialist consultant? If not it is worth having a look at the NICE guidelines and getting a referral. Once DD had been seen by our specialist we had a plan and things gradually improved - although slowly.

I joined Mumsnet because of my DD having CFS/ME. I was told about a lovely supportive thread that ran years ago with mums in the same situation. here's a link
and here's part 2

You might find it useful to read through and see what helped each of us and the issues that we struggled with.

I am also happy for you to message me if you need any further support. It's a hard road, but there is light at the end of the tunnel.

I don't have any advice but I am so sorry as can't imagine how hard this must be. I feel almost glad it's me who has ME (or something similar) in our family rather than the DC; They did start off low in energy but it gives me such relief to see them build in strength and stamina as they grow bigger. I do hope things get better OP.
I am very interested in gut health as it seems at the bottom of a lot of things but have yet to find a big improvement and just manage my activity carefully.