child with post viral fatigue syndrome

[angielou791417]

Hi everyone I want to raise awareness for children with post viral fatigue as it is poorly recognised by people and its hard enough to cope with an ill child without knowing people are saying its all in her head or her problems have become habit! This is an ilness that has been progressing for three months but the diagnosis is new and I am unsure but think it the same as ME . My daughter is ill but no one agrees because she doesn't look poorly all the time they think she ok and I'm tired of friends and family how ever well meaning appearing slightly disbelieving. I am her mother and I know she is ill x even some doctors give me the over reacting mother look and it is so frustrating! So I am interested to hear from people who may have gone through similar things or from people with ME or PVFS or CFS who understand how difficult it is when no test can prove what u know!!! ME is real and it is horrible

Hi angielou ... think there is still a support thread around on the children's health thread for parents of children with ME. Have a look on the AYME website (Association for Young People with ME) also Tymes Trust. You are not alone but unfortunately there is still a lot of ignorance out there, often from well meaning friends and relations. My DD was 15 when she became ill. Unfortunately, she is still severely affected 6 years later but this is very rare and most do recover and go on to lead normal lives. It is crucial not to push to hard in the early stages though and to pace activity sensibly. I need to go out now but I will look in later if you want to ask anything or you are welcome to pm me.

Oh thank you so much its so nice to hear from someone who can relate to it all x am sorry to hear it lasted so long for ur DD but at least she has you to help her and understand x I did post on a similar thread and got a lovley helpful reply from a lady with ME recomending that website so thanx I will have a look x did u have to make drastic changes to your life when your DD first became ill ? And did it get worse at first because my daughter is nine and she has more symptoms today than even last week she can do less and is exhausted easier so it is significantly getting worse ! Am going back to GP on friday to try get more info x thank u again x

your poor DD - only 9. They usually get worse because they are doing too much. It is really important to pull back on what she is doing until she can manage her activities without getting worse. There is information on pacing on the AYME website. With the summer holidays almost here, it should make things easier without the pressures of school. Is your GP helpful? Unfortunately not all are. Who gave you the PVS diagnosis? I think after 3 months you should probably be pushing for referral to a paediatrician.

angielou I could have written your post. My DD was diagnosed with PVFS last year at the age of 13.. She was a really sporty girl and has cut back on almost everything. Her school have been fantastic and really supportive, she does half days - going in for core subjects. She has managed to keep up with her classmates because she's wanted to, no pressure from school. Her friends are hugely supportive and understanding, and will arrange girly chill out days so she can still have a social life.
She has good days when she's almost back to her old self, and she has really bad days when she can't get out of bed, and we never know from one day to the next how she'll be. Unfortunately, she is worse now then when she was first diagnosed. Her consultant told her 'to live within her limitations and listen to her body'. She is getting better at that but sometimes still pushes herself too far when she has a good day.
Please PM me if you want to chat.

Oh thanx for that I feel better already that I can chat to people who totally understand!! My DD wasn't really sporty but is extremeley clever she could read write and spell at two and a half and now on a bad day she has to ask what certain words mean and she is confused. also she used to be the most laid back child ever nothing ever bothered her she was just happy to get on with life and now she has tantrums and crys and clings to me which she has never done in her life! My GP has been good he listened and didn't make me feel stupid when I said I was worried bout leukemia and did blood tests and sent her for a MRI scan. I tk her to opticians and dentists to rule out anything underlying and there was a horrible time when she got severe abdominal pain and ended up in hospital where they did an ultrasound. All the scans and tests were clear so she was referred to a neurologist. After the hospital admission I was sick of waiting for a neurologist appointment so went to the GP again and asked him to try speed it up! Well the message between the doctor and hospital got mixed up so they rung me to take her to a ward thinkin she still had the pain! Even though we were there by default a neurologist saw her did a few tests and he gave me a diagnosis of PVFS which I think totally fits. Ellise was sat on the bed eating chips and seeming fine when we saw him and he asked her things she couldn't understand or answer so I was a little aware he couldn't see much wrong with her at that time but she had been falling asleep that lunchtime and had done nothing for two weeks just rested after being in hospital with morphine! I think the most valuable thing I have in getting help is the daily symptom diary I have kept so the doctors can see how she has to live her life and how affected she gets by simple activities and also how much worse it has got x We are now waiting for the original neurologist appointment where I can hopefully find out more. Ellise has headache earache sore throat joint pains exhaustion and gets mentally confused she has had the abdominal pain which is probably cos I let her have a full week at school as she seemed to be a little better before that.if we hadn't ended up at the hospital by accident I would be goin out of my mind not knowing and also totally making the illness worse by encouraging activity on good days. She has only done that one full week at school since easter and it put her in hospital! Now she can't do much at all or if she does it means she is crying and exhauseted after particularly a few days after. I can't seem to get people to realise how ill it makes her and to remember ellise before all this and how out of character the outbursts are and how that isn't her it is the illness. Thanx for reading my post sorry for the epic novel but its good to chat x

It is good you are seeing a neurologist who seems to be on the ball. When is your appointment? You are definitely doing the right thing recording all her symptoms as it is difficult to remember everything when you see a Dr. Other people will only see her making an effort, you know her best. One of the really difficult things is the fact that the symptoms happen afterwards, not at the time. Could you send your family and friends links to some of the information on the internet or print something off? AYME have a really good helpline with people who understand - might be worth you having a chat with them.

I hear www.tymestrust.org/ are good.

Look at this pdf, it is 36 pages long, but near the end on pages 33 and 34 there is a "Letter to educators & agencies regarding young people with myalgic encephalomyelitis (ME)"

Also see investinme.org/ and www.facebook.com/groups/5804522506/

and www.facebook.com/VoicesfromtheShadows?sk=wall and voicesfromtheshadowsfilm.co.uk/

Hello, I'm the lady who recommended AYME and Tymes Trust They really are fabulous charities, and well worth contacting for advice and help if you need it, especially with issues surrounding schooling.

Sadly doctors are so sceptical of this illness it's almost barbaric. There are some who are fantastic though, it's just difficult finding them! Does your area have an M.E clinic? I know Hampshire and Dorset have them as I have been under both, not sure about other areas but if there is one it's worth asking for a referral. I know from M.E friends that Bath has (or did have) a very good department for adolescents with M.E and post-viral fatigue.

My heart goes out to children who get this illness, it's one of the most difficult to come to terms with and as an adult sufferer I can't imagine how hard it is for young people to get their heads around. All of you mums sound amazing Just having someone who believes you and doesn't force you to do things when feeling so poorly is an absolute godsend.
Angie if your daughter is struggling to do much at the moment try encouraging her to do smaller activities when she is up to it to help with the emotional side and the boredom. Activities that I and other AYME people have found useful at a lower percentage include audio books (there is a great charity that loans them out for free), crafts, baking, word searches and puzzle books, colouring in, writing letters and painting nails.
Has your daughter started pacing at all? This is the thing that most sufferers find most helpful and is often what helps start the road to recovery. She needs to find her baseline and stick to it for a few weeks, then very gradually increase what she can do. It's so boring but it really does work!

I think it's great you want to raise awareness, these type of illnesses are so underfunded and largely overlooked. If more people knew how severe they can be they would be much easier to cope with.

hi everyone am so greatful to you all for your replies. The neurologist appointment is on 12th of august so am getting all my symptom diarys ready so am prepared. My DD went to school today as it is the last day of term her only day in a week, and she fell asleep at playtime and was crying and hysterical when i picked her up begging to go home. when we got home she was really disorientated and kept saying she wanted to go home and this wasnt her house and she felt confused!
she calmed down and within a couple of hours was ok just exhausted x went to GP as already had an appointment, and he said she had a provisional diagnosis from the hospitaland would recieve a proper one from the neurologist but that he and his superiour had also queried PVFS. i said i knew it was that and as we have ruled other things out i was confident with the diagnosis as she has almost every symptom and has really deterioated over the last two weeks.She is really confused and asking me whats wrong with her and why she has to go to bed before her younger sister and im not sure what to say. we are going to look at all the sites suggested tomorrow and maybe it will answer a few questions for her.
i am a childminder so the face it is the summer holidays makes it harder as i am paid to tire children out with outings and fun stuff. i had already scaled down the plans i had made to help DD cope but am realising now i have to really rethink the wonderful summer i had hoped we would have. luckily the children who come are great and we will have a good time with revised plans and their parents are very understanding but it is a shame and saddens me.
we have signed up to one of the sites mentioned above and are waiting for confirmation email and thanx for the activitites sugested they are fab ideas. As for family and friends well i know people are trying to be kind but it kind of hurts a bit when they misunderstand so much, sugesting it is the heat or her age or stress or.....................! it is already really difficult to accept she has something so debillitating i need people to agree with me not try to dismiss a diagnosis i already have and know is right. can i ask if anyone knows if it is possible to get a badge to park near to places for i cant go anywhere with her that involves walking far. thanx again everyone.

Hi again. You won't be able to get a blue badge (disability badge) as she has not been ill long enough. You normally automatically qualify (although have to apply separately to your local council) if you are on higher rate mobility of Disability Living Allowance. Alternatively you can apply to be assessed by the council separately but there is normally a criteria of having to be disabled for a number of months. Have a look on your council website as my memory is rusty on this. One suggestion, would you use a wheelchair for her just to get her to places - you can borrow them in return for a donation from the Red Cross - again you can find out where from on their website. It will just save her energy so she can use it to enjoy herself when she gets somewhere rather than being worn out when she gets somewhere. Must admit .... your DDs confusion about knowing where she was when she came home is a little unusual imo ... make sure you mention that to the neurologist. ME/CFS memory problems are often described by sufferers as "brain fog" - they can't think clearly, remember well etc. I have not heard of any total confusion and disorientation.

Thank you I did think it was a long shot getting a parking permit its just really crap where I live u can't park anywhere! I have considered a wheelchair but to be honest I am still finding it difficult to accept this as all happening and the visual shock of seeing her in a wheelchair frightens me! But I will do that if she continues to decline its better than her sitting in a pushchair which is my only option at the moment and she is a big girl!!!thanx for the advice cos I wouldn't have had a clue where to get one from . I think she was diroriented because she was so exhausted and confused and it makes her panic when she feels like that I think she forgets what she is saying and gets mixed up but I will defo tell the specialist x thanx for replying again x

I know what you mean, it is a tough one. You are doing your best for her and I know it is hard on you too. Let us know how things are going.

I will thanx its really good to chat x how's your DD? Hope she ok x

My 14 yr old DD has CFS and we have a blue badge ( have never tried to apply for any types of DLA or benefit) ,we did have to attend for assessment and the woman doing the assessment really didnt have a clue about CFS ! My daughter has been out of full time education for 18 months and was part time for 4 months before that ,she won't use a wheelchair which is very limiting .The one bit of advice I would give is try to have a routine and stick to it where you can , don't let your daughter stay in bed for whole days even if getting up means you only go as far as the sofa .The most important thing to stick to is a bedtime and a getting up time ,that is one of the main things we gained from a course of CBT that she did at KIngs Chronic Fatigue Unit. Good luck ,I hope your daughter improves soon .

Thank you for replying I'm sorry to hear your DD has been ill for so long I can't believe this could continue for years but I know I am goin to have to try get my head around it! I still think and hope she will get up tomorrow and be fine but I know I'm wrong! The idea of a course appeals to me as I intend to get all the information I can to make sure we as a family can help my DD x how do you all cope with work commitments?? Has anyone had to give up work to look after their child??? I have other children and work from home so my daughter has to get up with us and I have given her an earlier bedtime but she is sticking to it so am trying to establish a kind of routine x hope ur DD is ok and managing x

I've always been a SAHM fortunately ,there is no way I could work with my DD the way she is now . We currently have a tutor for an hour a day either at home or at the library and the times vary each day / week to fit in around all the others that also use the tutor . Educationally she is doing ok so it was a better decision for us to be out of mainstream education , she was barely going to school but we very rarely cancel the tutor .

Luckily I'm a childminder so I can work from home but I was going to retrain over the next year and do something else when the little boy I mind goes to school x its good I can manage to care for my DD as I do this job and she doesn't get bored with other children here but sometimes its too noisy amd sometimes she just wants me to sit with her and I can't which makes me frustrated and sad x also she is goin to have to miss a lot of our activities this summer as she too tired but we are on holiday the last two weeks in august and I can't wait cos I can give her lots more time then x I can't imagine how difficult it would be if I had a diffrent job it wouldn't be possible. I'm glad your DD is doin well with the tutor amd keeping up with her work I havnt really thought much about schooling I supose I will have to on september x