son diagnosed as having cfs

uolypool

Hi after son became ill last november with hepititas he has just been diagnosed as having chronic fatigue syndrome, its actually nice to be able to put a name to his condition ,I was beginning to feel he was imagining some of his pain tiredness etc........ would he qualify for any kind of disability benefits he is 12 years old nearly 13

mealone

uolypool wrote: »

Hi after son became ill last november with hepititas he has just been diagnosed as having chronic fatigue syndrome, its actually nice to be able to put a name to his condition ,I was beginning to feel he was imagining some of his pain tiredness etc........ would he qualify for any kind of disability benefits he is 12 years old nearly 13

You arnt awarded DLA on a dignosis but on the care and mobility needs you have.

It is very difficult to get an award for CFS but it is possible, you need plenty of evidence to back up a claim and you should start collecting this now by talking to everyone who has a part in your sons care to documant the needs he has above a "normal" child of his age.

To claim your son must have been ill for three months and be expected to be ill for at least another six months to be considered for DLA.

Dont fill in the forms yourself, find a WRO from recomendations is best but that can be hard to do.

Invasion

I have ME, and being 17, I claim both incapacity benefit and DLA, DLA at HRM as I use a wheelchair outside and have trouble with my legs collapsing, and low rate care, as I need help with washing, dressing, getting in and out of bed, making a meal, generally being safe.

As Mealone said, it's not about the diagnosis, in general, ME or CFS is seen as a mild illness... and not one that affects peoples daily lives too much, which obviously isn't the case for all, I manage having a bath maybe once a week, with bath board and help from mum, and she washes my hair etc. What things does he need help with that any other healthy/undisabled child his age wouldn't. Proving that he's likely to be ill for 6 months or more is also unlikely to be all that easy, the criteria for diagnosis has changed, and often people are being diagnosed and "getting better" in a matter of 6 months. Letters from a neurologist/consultant would be useful. And get help, DLA isn't always an easy thing to get, particularly with something that can be as varied as this. Good luck.

uolypool

many thanks to both of you , he struggles with mobility, cannot walk very far at all without needing to stop and sit on a wall or something similar max he can walk without help of some kind is about 50 foot he struggles with the stairs so much that he now has his bed downstairs in the lounge and when he goes up the stairs his brother supports him as he also does when he gets in and out of the bath ,he is like this most days and has been since november of last year.His cfs nurse has said that it could possibly take upto two years before he is back in school full time at the moment its 2 hours a week he is in school and they are recommending home tuition ready for the new school term in sept.He is waiting for his action plan to be drawn up and put into place

Paparika

uolypool wrote: »

many thanks to both of you , he struggles with mobility, cannot walk very far at all without needing to stop and sit on a wall or something similar max he can walk without help of some kind is about 50 foot he struggles with the stairs so much that he now has his bed downstairs in the lounge and when he goes up the stairs his brother supports him as he also does when he gets in and out of the bath ,he is like this most days and has been since november of last year.His cfs nurse has said that it could possibly take upto two years before he is back in school full time at the moment its 2 hours a week he is in school and they are recommending home tuition ready for the new school term in sept.He is waiting for his action plan to be drawn up and put into place

Aww hugs to you both, after years of pain and suffering, and people not really believing me, today i was given my diagnosis Fibromyalgia, same boat as your son in the sense of distance of walking or is that staggering sometimes, i bum shuffle most of the time up and down the stairs to the loo, i'm a single mum and thank god i can just cope with a bath without my 14 year old son helping me


I've had to give up driving it's too painful
Housework whats that, i can't even vacuumn i feel so embarrassed

Invasion

Just a question, if he's at the stage where he can't get up the stairs by himself, should he really be trying to get into school at all? I had home tuition for a few months and managed to take 5 GCSE's from home after having no education for a year, as I was just too poorly. It's not worth making yourself worse for something that can be done at any time, once you've slid down the scale and keep pushing it's much harder to get back up again.

An OT assessment might be useful, I have an OT that I see every month, at the moment we have a bath board, grab rails, anti slip mats, it's given me a little more independance. Does he use a wheelchair in school? If he's struggling to walk that badly and he's too exhausted and weak to do so, then it might be worth looking into getting one on loan from the red cross? Trekking poles in the house for some extra stability and support.

Can you look into home tuition? If he's well enough at all? It does still take a lot out of you, but it's easier to manage and you get aLOT more learning out of an hour than you do in a classroom environment, you'd need a letter from consultant to get that most likely.

Please be careful putting times on recovery, it can make it tough on the person that's ill if the people around you are expecting you back full time in X amount of time, and make it seem like a failure if you're not managing.

Also, I'd recommend ayme - association of young people (under 26) with ME, they have a bi-monthly magazine, and also online forums, aswell as a regional contact who can arrange pen pals/people to text or email etc. Foggy friends might be useful support and information for you

oops, main question :P It sounds as if, with a good claim and lots of supporting evidence, he might get Higher rate mobility DLA- in general that's can't walk 50m without severe discomfort or stopping, but pace and gait is also taken into account, and care, though I can't really say anything about rates, as after having my aunty stay for the weekend who's a welfare rights advisor, she thinks I should be on middle rate as opposed to lower. Have a look online, benefits and work website and use your local CAB too. Sorry for mega ramble

Millburn_farm

uolypool; and your son ((((((hug)))))) yes your son does quailfy, dependant on how ill and for how long; how much ?????

If/when you are going to claim; get the CAB or your similar local body to help with the forms; it helps in two ways; 1stly they just know the forms; and more importantly your son can sit and be honest with out-siders for a wee while then "forget" it's how I manage, and many people I know do too; admitting how ill you ar on a daily basis is almost impossible

the biggest hirdle; is you and your son; it's sooooooo difficult to admit how much ME/CFS takes from you; you will be able to do this more than he can it's how people cope with disabilty



on the up side; the people I know that have got over ME; were diagnosed young and had their parents full support; not a 100% guarentte; but a good plus

uolypool

Invasion wrote: »

Just a question, if he's at the stage where he can't get up the stairs by himself, should he really be trying to get into school at all? I had home tuition for a few months and managed to take 5 GCSE's from home after having no education for a year, as I was just too poorly. It's not worth making yourself worse for something that can be done at any time, once you've slid down the scale and keep pushing it's much harder to get back up again.

An OT assessment might be useful, I have an OT that I see every month, at the moment we have a bath board, grab rails, anti slip mats, it's given me a little more independance. Does he use a wheelchair in school? If he's struggling to walk that badly and he's too exhausted and weak to do so, then it might be worth looking into getting one on loan from the red cross? Trekking poles in the house for some extra stability and support.

Can you look into home tuition? If he's well enough at all? It does still take a lot out of you, but it's easier to manage and you get aLOT more learning out of an hour than you do in a classroom environment, you'd need a letter from consultant to get that most likely.

Please be careful putting times on recovery, it can make it tough on the person that's ill if the people around you are expecting you back full time in X amount of time, and make it seem like a failure if you're not managing.

Also, I'd recommend ayme - association of young people (under 26) with ME, they have a bi-monthly magazine, and also online forums, aswell as a regional contact who can arrange pen pals/people to text or email etc. Foggy friends might be useful support and information for you

oops, main question :P It sounds as if, with a good claim and lots of supporting evidence, he might get Higher rate mobility DLA- in general that's can't walk 50m without severe discomfort or stopping, but pace and gait is also taken into account, and care, though I can't really say anything about rates, as after having my aunty stay for the weekend who's a welfare rights advisor, she thinks I should be on middle rate as opposed to lower. Have a look online, benefits and work website and use your local CAB too. Sorry for mega ramble

hi many thanks for reply he hardly ever gets into school and it was the cfs nurse who has now suggested home tuition, upto now his consultant at hospital has just put it down to "his imagination" i think wasn't very supportive at all, was only when i became very persistant and put my foot down and insisted he wasn't making it up and got our fantastic school nurse involved that we were even referred to a cfs nurse, also it was the cfs nurse who made the initial comment that it could take two years before he was back in full time school, me i'm just glad that we finally have a diagnosis so at least we have something to work with , I will look into borrowing a wheelchair for him just to get him out really i thought i would just have to contact the local hospital

cyclingyorkie

you are not alone - have sent you a pm!

foreign_correspondent

you may want to talk to school about home ed, but whilst maintaining some visits to school (could he go on a part time timetable? maybe go into school for a particular lesson he likes, or the occasional lunchtime to see friends?)

I wrote my masters dissertation on the social aspects of CFS/ME for young peole, and a common feature which came up in my research was social isolation, which was very saddening for many young people, and made re-integration into school and college harder when they recovered, as they had become so remote from their peers. Friends often visit children off school for a few months, but then over a period of time, naturally this tends to dwindle, and can leave young people feeling very isolated.

feel free to PM me if you would like any more information on this aspect of the condition.