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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

206 replies

go8smacked · 30/09/2011 21:00

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 Shock 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.

OP posts:
Original poster
go8smacked · 30/09/2011 23:22

worraliberty she has been diagnosed with chronic fatigue, consultant is going to write a letter to the school to discuss moderation of activity etc and to remind them to keep a diary of her activity/symptoms which he will need as further evidence in combination with a diary kept at home to diagnose as Chronic Fatigue Syndrome They started the diary earlier in the year but let it lapse.

OP posts:
ImperialBlether · 30/09/2011 23:22

And of course children do mirror other people and become very clever at it, too. OP, if ME is post viral fatigue, why would it be hereditary?

Lougle · 30/09/2011 23:23

dd2 'self-soothes'. She is 4. She sucks the back of her hand and pinches the inside of the fold of skin next to the thumb. It tells me she is tired. That's it.

cory · 30/09/2011 23:24

If the paed said he would be writing to the school a week ago, then it may be a few more weeks before the letter arrives (in my experience). I would contact the school now and tell them the letter is on its way and ask if they could contact you when it has arrived to arrange a meeting with the SENCO. If you haven't heard from the school in a fortnight's time, then ring them to check. If they haven't heard from the paed in a month, then ring his secretary.

porcamiseria · 30/09/2011 23:24

dont hold back acolpyse, say what you think!!!!

OP I think you should not pop in to school and try and let your daughter manage it and trust the school to manage it

It might be that she does play up a bit????

squeakytoy · 30/09/2011 23:24

I also made a point of updating her medical records to show that she is being assessed for chronic fatigue

she has been diagnosed with chronic fatigue

Which one is it???

nenevomito · 30/09/2011 23:24

I think that people are being bloody harsh to the OP and that these comments wouldn't be flying around if it were any other condition. Some of the comments on here are Shock

CocktailQueen · 30/09/2011 23:26

Um, it comes across that you are a v overprotective mother. Just because you have ME does not mean that your dd does. I don't think that popping in beteen classes does any good at all. Let your school deal with it. I know that when parents come in to school their dcs' reactions change and they play to theor dps.

ghosteditor · 30/09/2011 23:27

OP, I'm not going to weigh in here as I think you've had an unnecessarily tough time, especially given the info you've now provided. One genuine question though - could you point me to the evidence that says there is a genetic link for ME etc? My mum has chronic fatigue and i've always been told that there is categorically no evidence for a genetic link. If new studies have been published I would like to read them as it is something I need to know, for me and for my children. Thanks.

cory · 30/09/2011 23:27

ImperialBlether Fri 30-Sep-11 23:17:44
"OP, you seem to contradict yourself.

You say, "I also spent years being labelled a hypochondriac despite being bedbound and unable to stay awake for more than 2 hours a day."

Then you say, "I don't get any attention because very few people know I have it and I fight it every day. My children don't even know that I am ill."

Those two statements contradict each other."

Do they? IF the OP has had ME for 20 years is it not feasible that she may have been bedbound at one stage before she had children, but not at a later stage when she did? Plenty of time to fit that in in 20 years, I would have thought. My friend's ME fluctuates: sometimes she can work, sometimes she can't.

ShirleyKnot · 30/09/2011 23:28

I haven't completely read the whole thread OP, but I am terribly sorry that you feel bashed and bruised by it (AIBU is a particularly harsh environment for anything other than Wedding Wankery and Neighbour DingDongs).

I've read all of your posts, and I have a friend in a similar situation. Her lovely DS has missed most of the last term due to his Chronic Fatigue and he ended up in hospital last week. It's exhausting for a parent who hasn't got this horrible illness, to deal with the ignorance of Joe Public, let alone someone who is battling it themselves.

I completely agree that the headteacher's comments were unreasonable and if I were you I would push for a meeting during which you educate her on the problems facing children who have this debilitating illness.

(ignore the foamers)

ALSO - FFS. Is there actually any need for the fucking absolutely shitty comments on this thread? It might be in AIBU but it should have been in Children's Health - have some fucking compassion!

Original poster
go8smacked · 30/09/2011 23:28

ImperialBlether I have had ME for over 20 years. The horrendous experiences I suffered when first ill have caused me to hide my condition. I also moved hundreds of miles away and do not keep in touch with anyone except my family from that time. ME comes and goes, when I was bedbound I had it severely. I now have a much milder form and have learned to pace/regulate myself.

OP posts:
cory · 30/09/2011 23:30

fwiw my dd has packed being wheelchair bound and performing at ballet shows into a much shorter period. Not because she has been cured, or because she has been faking it, but because her condition fluctuates.

Original poster
go8smacked · 30/09/2011 23:31

ImperialBlether DD has had all sorts of visits to Drs/hospital like any other child. She knows that she is tired all the time obviously and that the Drs have been trying to find out why. This has been since she was 2 so it's just like a visit to the dentist to find out why she has a sore tooth for example.

OP posts:
Whatmeworry · 30/09/2011 23:31

I can't work out who had what when from all the contradictions here, but the solution seems pretty clear cut to me:

  1. Get the Paediatrician to write the letter with the actual diagnosis, then you can have a more productive discussion with the school about what is wrong and how to work with it.
  1. Stay out of school unless they or DD call you from now on, you are not helping matters.
Original poster
go8smacked · 30/09/2011 23:35

ImperialBlether there is a theory that there is a genetic predispostion to Chronic Fatigue Syndrome, so I may have passed down a gene which made her more likely to get it :(

OP posts:
ImperialBlether · 30/09/2011 23:36

They haven't diagnosed it though, Whatmeworry.

Original poster
go8smacked · 30/09/2011 23:40

ghosteditor I may be out of date, it was what the ME specialist told me 17 years ago. Sorry if I've alarmed you. A quick google search brings this up:

chronicfatigue.about.com/od/whatcausesfmscfs/a/genetic_predis.htm

OP posts:
nenevomito · 30/09/2011 23:40

If there wasn't a problem than the paediatrician would have said there wasn't a problem. They don't keep kids on their books for no bloody reason at all. But hey, why listen to a medical professional who is qualified to make an assessment when you have Mumsnet AIBU to diagnose. Oy!!!

Read what ShirleyKnot has said above. She's got it right.

worraliberty · 30/09/2011 23:41

It's not normal for 'any other child' to keep visiting the Doctors and hospital though Confused

piprabbit · 30/09/2011 23:43

I think it is a shame that your DDs teacher expressed doubts about your child's illness - it is unfortunate because it can only undermine the relaltionship between teacher and pupil. Children tend to be very sensitive to 'unfairness' and if your DD feels that her teacher was unfair then it is likely to be something she remembers for a very long time.

I guess that you will be keeping a close eye on your DD over the weekend. I hope she doesn't suffer any ill-effects from being pushed to complete the school day. I've skim read most of the thread and don't think you mentioned how she was when she got home from school. I really hope that she is able to rest and recover quickly.

The sooner the hospital write to the school, the better. In the long term, I think you are going to have to rely on the school to contact you when DD is struggling (hopefully once they are better informed about the illness). You may need to go in and discuss the exact consequences to your DDs health if there are any future episodes when they do not take her seriously (e.g. by saying that DD told Ms X that she was ill, Ms X decided not to take action resulting in DD having to take 2 days off school to recover).

Good luck to your DD.

garlicslutty · 30/09/2011 23:46

Imperial - jury's still out. www.actionforme.org.uk/get-informed/news/archived-news/research-news/2011/evidence-for-a-heritable-predisposition-to-cfs - there's a link to the full paper at the end of the page.

FWIW, it seems to be set off by extreme stress - emotional or physical - such as a long operation under anaesthetic, a bereavement, lengthy virus infection or doing important exams, etc. It could be worth taking very much extra care when you or your DCs go through such experiences. I don't know if anybody's found out why some young children have it; it appears they can be born with it.

nenevomito · 30/09/2011 23:46

It's not normal for 'any other child' to keep visiting the Doctors and hospital though

Not for a child who isn't ill though worra. I've lost count of the number of times I've been in and out of hospital or with paediatricians with DS to the extent that DH and I joke that we're finally getting our money's worth out of the NHS.

Thank your stars that you don't have a child with a chonic condition, but that doesn't mean that the OP doesn't.

cory · 30/09/2011 23:47

Re the diagnosis the OP stated in an earlier post:

"DD is being assessed for Chronic fatigue syndrome (also known as ME)but has been diagnosed with chronic fatigue."

So I can't see why people are still asking if there is a diagnosis. The OP has already told us that there is one diagnosis and that her dd is under assessment for a further diagnosis.

worraliberty · 30/09/2011 23:48

Exactly babyheave and that's my point...the OP says her child doesn't know about her illness so can't possibly play in it.

Anyway OP, I can't see the school having much understanding until you make sure the paediatrician contacts them.

Good luck.