AIBU to be gobsmacked that DD2's Headteacher told her to stop pretending to be ill when she has chronic fatigue.

[go8smacked]

DD2 has been suffering from fatigue for nearly 3 years and is under the care of a paediatrician. School know this and that he will be writing to them to discuss how to manage her fatigue.

Today DD2 was very tired, paediatrician has advised that she needs to go to school but we need to moderate her activity, so I send her to school but go in at 11am to check on her. I can see that she is tired as she is self-soothing (she is always tired to some degree) and when she sees me she pleads to come home. Her teacher (also the headteacher) starts to tell her how she has been fine all morning and to stop making me worry ?!?!?!?!? I'm not happy about leaving her but I don't want to undermine her in front of the now assembled crowd of children. I tell my DD2 that I think she should stay for lunch and that I will phone the school after lunch to see how she is. DD2 is not happy but accepts this.

After lunch it takes 30 minutes before anyone even picks up the phone. The secretary goes to check and comes back to say DD2 has not complained again of being unwell. DD1 & DD2 come home. DD2 say's no-one asked her how she felt but that the headteacher spoke to her about how it was important not to pretend to be ill DD1 says that DD2 was tired at lunch and had to sit on a bench.

I cannot believe that the headteacher has basically accused my DD2 of hypochondria - DD2 was laying it on a bit thick when she saw me but I could see that she was tired.

I have had ME for over 20 years and so I am well acquainted with the symptoms and how people just can't 'see' that you are unwell. However the headteacher knows that DD2 has had extensive tests and regular hospital appointments. I also made a point of updating her medical records to show that she is being assessed for chronic fatigue.

I can't believe that the headteacher has taken DD2 aside and told her to stop lying about being ill. I know I need to speak to the headteacher but at the moment all I want to do is remove all my children from this school.

Thank you go8smacked. for what it's worth your info may well be out of date now, but it will certainly make me spend some time reading up on the latest info. Researchers are so far from identifying causes of chronic fatigue syndrome that I can't see them being able to pin down one gene or a set of genes on which to blame it. in any case, I think I need to look into this a bit more. Thanks. Hope your little one gets better.

squeakytoy she has Chronic Fatigue but further evidence is needed for Chronic Fatigue Syndrome. I updated her records when her other health problems had resolved.

They haven't diagnosed it though, Whatmeworry

To which I quote, from the OP "she has been diagnosed with chronic fatigue, consultant is going to write a letter to the school to discuss moderation of activity etc"

....or am i missing something?

CoctailQueen it is a paediatrician that is assessing my DD for Chronic Fatigue Syndrome - he was already assessing her for a much more frightening illness. I do not want my child to have ME but there is something wrong with her and I would be being negligent to not allow her to be assessed. I would not wish ME on anyone.

CocktailQueen the school has been ignoring that there is any issue - that is why the consultant is having to write to the school. To reiterate I popped in today for the first time because I was genuinely worried and wanted to see her for myself as on previous occasions when I have relied on the school to manage the situation she has come home in a terrible state on various occasions.

BTW DD1 was in the same class and so she could tell me how DD2 had been.

Is it a Steiner type/private school where you can just pop in?

It's lucky you can leave work and pop into the school, and fortunate you work near by to be able to do just that.

Are you able to take your dd home and if you work, can you get cover just like that? Sounds like you must be self employed.

It is very sad that your dd has a chronic tiredness condition, especially, as you say, you have other dc and presumably they are older and don't have the condition.

Is she one of the youngest children ever to be diagnosed do you think? Is there a group where you can meet other parents with the same condition? May be you could start one up if there isn't?

No doubt they checked her thyroid levels? Sometimes there is a link especially with anaemia and fatigue.

All in all, a worrying situation for you. Your dd clearly played up when you arrived as you say yourself she laid it on a bit thick, but that's to be expected, she's only 5 after all so it's not really surprising the HT made the comment.

Are you worried they think you're overprotective with Munchen by proxy tendencies? It sounds as if you are so, do something about it, get a working plan of action with the school ASAP to reassure you and keep your dd/school happy as it's going to be very difficult for a teacher to keep an activity diary for just her when there are large numbers of boisterous children in your dd's class if she isn't recognised as having SN.

Good advice there from jugofwild. I found I had to work very hard to ward off suspicions of Munchausen by p- but it paid off in the end.

jugofwildflowers no I'm not worried about Munchen by proxy I hadn't even considered it.

DD2 has been ill for around 3 years, she has had various problems with anaemia and low hormone levels but when these have gone back to within normal range her fatigue has not gone away.

My worry is that the school told my DD to stop lying about being ill.

Thank you to those who have posted productive/helpful comments. Good luck to those fighting the effects/prejudice of ME. I will not comment on this post again as it appears that some of the people (not all) who respond to AIBU are indeed BVVVU.

Ok, but do you not see it was a pretty valid comment when you yourself saw she laid it on a bit thick?

DC lay it on a bit thick when they see their parents, it's natural! Anyway, you are clearly very upset about it and that is sad, but you should go to bed now and think about a plan of action which you can discuss with the HT so there is a positive way forward for everyone concerned.

go8smacked - hope your Consultant hurries up with the letter to the school. Until that arrives, I wouldn't worry about tackling the HT - you will do better once you have the piece of paper in hand.

She shouldn't have said what she said to your DD - your DD may now think that she mustn't tell people when she is feeling tired in case she is accused of pretending again - that is a Bad Thing.

Whoever asked about post-viral syndrome being the same as chronic fatigue syndrome - no it isn't exactly. They are in the same arena, sure - but there isn't always an identifiable prior infection to CFS. And yes, there is a possible genetic link for susceptibility to CFS/ME.

shirley is right

i really feel you have had a very hard time here op - a lot of you should be ashamed of yourselves.this is an awful illness which destroys lives and relationships and families.
i have lost pretty much everything i had including my independence since i became ill 10 years ago.
fwiw i think there us a genetic/family link as my grandmother was very ill with something similar to me before she passed away but was dismissed by doctors after being told 'old people don't get me' - a lot of doctors don't believe in it full stop.there is no diagnostic test at the moment - doctors basically eliminate everything else before you get the diagnosis.i was tested for loads of conditions including a brain tumour.
i never really had any ill health before this illness so if it can happen to me it really could happen to anyone.
just be very grateful it hasn't happened to you.awful illness with terrible prejudices and currently no cure or treatment.

but at 5yrs old, are children really that manipulative/ able to exaggerate behaviour in order to get out of school and come home early

Oh yes, without a doubt!! My friend's dd (5) has done this a few times in her very short school life. She is in reception still (don't start school here until 5). Always complaining of something, one time a 'terrible' headache, then a tummy bug, next time a tummy ache. Each time the teacher has fallen for it, as has mum, going in to fetch her home. As soon as the child is home, she is full of life & eating/drinking/running around the house. But during the time she is 'sick' she is very convincing!

It has happened at least twice a term, so 6 times since January (start of school yr here)

So yes, no doubt that 5yrs are manipulative enough to get out of school.

I wish that my son's school and doctor had taken it seriously when i said that he was repeatedly injuring himself as he was hypermobile like me. Instead they told he was hypochondriac and exagerating, and told me it was just copying. Fast forward 4 years and his paediatrician has diagnosed him, he is under an OT and hid pen grip is so irevecably damaged that he will need to word process and use scribes for the rest of his life.
Mums have enough trouble being accused of being hysterical by proffsionals without other mums joining in.
Regardless of the circumstance I don't believe it appropriate for a teacher to discuss with a child wether they may be exagerating or not, that's the parents job, especially when properly qualified people are involved.
OP YANBU

Mums have enough trouble being accused of being hysterical by proffsionals without other mums joining in

I think most mums on this thread are not "joining in" but are saying, in one way or another, that you will have a much more fruitful discussion with the school once you have some formal medical documentation.

The reason is, I suspect, that schools are continually faced with parents claiming various (undiagnosed) ishoos that entail special treatment for their child and are probably therefore sceptical of any one claim until it is backed up with professional medical opinion.

FWIW - I don't think YABU. You're doing the best you can for your child in the way you know how. I think the head was out of order to preach to your daughter about the importance of not pretending to be ill!

As for some of the nasty comments on here, you should be fucking ashamed of yourself.

I wouldn't be checking on her, I'd be waiting for her to ask.

I see the old ME prejudices are alive and well from some of the posts on this thread. For those of you who have contributed in this way just consider for one minute what it is like to have an (often) excruciatingly painful and debilitating illness for years on end - with the added misery of having no-one believe you are ill. Then factor in that you have a child who has also started exhibiting some of the symptoms that you have been to hell and back with. Not a pretty picture is it? Perhaps the OP is deserving - at the very least - of being cut a little slack.

OP, sorry to hear that the head spoke to your daughter in that way, he had no right to do that. I think that once the paediatrician has written his letter then things should improve for your daughter at school. However, I would be vigilant with regard to teachers trying to imply she is not ill and that she is swinging the lead. When push come to shove you know your daughter best and if you say she was near the point of exhaustion and you were worried then I for one believe you. Trust your gut instincts and look after your daughter in the best way you can. If the worst comes to the worst and she does have ME then at least she has an understanding Mum who will be able to give her good advice and help her manage her illness.

I don't think YABU.
Schools assume kids are all exaggerating illnesses. Some kids are actually shy of telling how bad they feel. My friend's son told his teacher he 'wasn't feeling well", and she ignored it, only to realise hours later he had been sick in the toilets and had a fever. My kids have had several incidents of telling teachers they aren't feeling well;they have been told to rest in the corner and then jollied along when really they needed to be home in bed,
Why do schools assume kids are all hypochondriacs? Some kids are, and some definitely aren't.

Another thing people don't realise unless they've been through it is the delays first in getting a diagnosis and then in getting the paed to contact the relevant authorities. It takes time, I can assure you. That is no reflection on the OP.

Totally agree with snailoon about how some schools assume that all children are trying it on.

I still remember the paed's non-plussed face when she had done her talk to the school and asked if there were any questions: the only one that came up was "how will we know if she is in pain?"

"Well, she will tell you", spluttered the paed. Dd was 10 years old at the time. She was diagnosed with a condition causing severe pain. The school had seen her for several years in pain, they had seen her crawl on her hands and knees to access lessons or get to the toilet whenh they wouldn't open the disabled toilet for her or move her maths set- and their default position was still that she must be lying.

My son had glandular fever for a while year, that also causes fatigue, he couldn't swim or do PE, I was told it could lead to ME he was 9.

I sent him to school every single day, I never checked on him.

My biggest concern was it would lead to ME if I allowed it to, if I pampered him.

He also had a chronic cough which would wake him at night.

Rather than pander you have to lead as normal a life as possible, don't go in and check. So she might be tired? Well she can always doze when she comes home. By playing to the illness you could in fact be making it worse.

What a horrible post, Fabbychic. Did you not read garlic's post, about how soldiering on with a flat battery can lead to utter prostration? Yet you choose to tell the OP that she is somehow going to make her DD's condition worse? How extremely unpleasant of you. :(

Fabbychic
You're lucky you didn't make him even more ill. Glandular fever can have terrible complications, especially if you don't do a good job recuperating.
I would assume there was something seriously wrong with the school if all these kids are so desperate to pretend to be sick.
On a thread a while ago everyone was bragging about how they NEVER let their kids have a day off school unless they were really ill. Sounds like there are a lot of children who feel the need to lie and fake illness.

OP as you know from my first post, I think it's outrageous your child was accused of pretending, and I would be absolutely furious if I were you.