My daughter who is 15 years old has been diagnosed with fibromyalgia, it took years before we got the diagnosis and Sophie has missed so much school due to illness, she has been receiving home schooling which is going very well, the doctors seem to think Sophie will be ok to go back to school but we are horrified at the thought, I know we have the right to home school ourselves but I suffer with MS and my husband works long hours, money is also a issue for us and I was thinking of asking for DLA for Sophie to help us with private tutors, if anyone can advise us we would be so grateful
Thank you
Jacquie & Sophie xx
Written by
Jacquiefripp
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Sorry as I cannot advise on this but surely if your daughter is disabled you should be able to claim some sort of benefit. I would suggest contacting your local CAB office or the benefits advisor on FMAUK xx
I am so sorry to hear about Sophie. My daughter was diagnosed 18 months ago. She is now 18. It is awful to have this so young and I really feel for you both. Are you under paediatric or pain management? I would really push for pain management. What meds have they tried? Abby has not had any success with anything other than tramadol and this knocks her out and loses effect if taken regularly so she just uses it when she is really bad or goes into spasm. But others find medication does help more.
What parts of her are affected and does she get flare ups? Abby's is constant. Does she have any other symptoms as well as pain?
Abby finds that heat helps. We have bought electric heat pads which she uses. We buy Linnex which is a heat stick that you can rub on, it's a bit like a deodorant stick and is only available on the internet. It is expensive but you only need a tiny amount so,lasts ages and it does really help her. The web site is Linnex.co.uk. I have had it checked out by her consultant and it is safe.
I also give her a massage every evening which helps her to sleep and keeps her going for a couple of hours the next day. She attends college for about 2 - 3 hours a day and has a much reduced timetable. It.might be worth sophie reducing the number of subjects she is doing and attending part time? Abby is doing her a levels over 3 years. Are her school supportive?
Has she tried physio or hydrotherapy?
Did the symptoms start after the Ovarian cancer jab? There have been reports of this causing FM symptoms. I don't think it was in Abby's case though.
I really hope you find something that gives her relief.
If you need any further help, please contact anyone in Admin who will be more than happy to help you.
I would also advise you to find out more about home schooling from your local education authority to see if they would pay part or all tuition.
The Citizens Advice Bureau is also very helpful and discreet, and there may be a local Disability Advocate in your area who could help you.
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Many apologies for the long post, hope to see you around the forum.
Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that your daughter has Fibro at such a tender age, and I am so sorry that you suffer with MS, as does my dear lady wife.
The GOV.UK website has a cache on home schooling, so I have pasted you a link to this below:
Hello and welcome to you. I really cannot add any further information than already said, but I do feel for you and your daughter and of course your hubby and hope that we shall hear from you again....xx
Hi, it might be possible to apply for an Education, Health and Care Plan. This is for children with health problems or learning disability that require extra support to access their education. I believe you can make the application yourself but you would need to google to find all the information and whether it would be possible. Just wondered if it might provide extra help for home schooling or support to get your daughter back in to mainstream. Not sure if she would qualify but might be worth looking in to.
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