Catch 22: Big time - Quite (& for quite read incandescent) cross

[Katymac]

The consultant says that 'anything' I do to make DD's life easier/more acceptable/more interesting while she is like this will increase the length of the condition

So no:
Touch typing lessons
Talking books
Screen Reader
Reading to her
Letting her friends help her
Providing a 121

Nothing

& it will last about a year (so on day 1 it was a few hours, then a few days, a week or so, a few weeks, maybe a month, a couple of month & now a sodding year)

& she can just join the year below when her sight comes back, cos there is no point going to school without any support

[thumbwitch]

FFS!! is the consultant serious?? WTF Are you supposed to do with her then? ARGH!

THat is possibly the worst shit I have heard (way worse than being told to do dizzy-making exercises 3x a day to stop my vertigo)

So - by that account, your DD gets to put her life on hold for up to a year. no fecking way!

[thumbwitch]

Have they offered any form of therapy for this? Like hypnotherapy for e.g. if they're so sure it's in her mind? Or have they just washed their hands of her?

(I just knew this was going to be you when I saw the start of the thread title)

[silverfrog]

I'm confused

(sorry if I'm not up on the terminlogy, don't wish to offend)

is this because your dd's conditionis self-imposed (for want of a better term)? and that might be down to general anxiety/stress? (I think, from reading previous threads. again, sorry if wrong)

so, if that is the case, how on earth will making her more comfortable and at ease be detrimental to her? surely keeping her anxious/distressed/stressed out would be worse?!

[thumbwitch]

I get the impression they think she is attention-seeking, silverfrog - and that "pandering" to her attention-seeking will elongate the duration of the problem.

Very about that whole idea, tbh.

[Katymac]

Why thumbwitch - bad spelling??

Umm she has appointments with a psychologist - these have been about her stress levels & her ability to deal with them. But this needs to change and they need to be about re-assuring her that her sight will come back

[silverfrog]

am right there ing with you, thumbwitch.

I can't see how not helping her is going to do anyhitng but panic her, tbh. I mean, it's not as though she is pretending to not be able to see, is it? and that she's going to just say "oh yes, you're right, I'll just start seeing agin then"

ffs.

surely a better way to deal with it would be to totally make it not the focus of attention, by giving help as necessary, in a natural, non-highlighting way.

[thumbwitch]

nope, not bad spelling - your DD's problem has just been on my mind a bit, I guess.

I didn't think you were going to get such a response from the consultant though, even though I also didn't think you'd get very far with it.

I hope the psychologist can be a bit more understanding and helpful as I think that consultant response is dreadfully unhelpful.

If I couldn't see to do anything by myself and was told that I'd get no help with anything for up to a year, I'd be so upset! What in God's name does s/he expect your DD to do in that time? She is likely to become so withdrawn!

GRRR! on your behalf now.

[thumbwitch]

I have another "alternative" suggestion for you - it costs a bit more than some of the others but might be helpful - a floatation tank. Supposed to be very very relaxing, you lie in a pod thingy of salt water, sufficient that you float (like in the Dead Sea), either with or without music. Ideally, you close the lid (some people find it claustrophobic though) and it can take you off into serious limbo-land for the hour.

might be worth a go, since she's not allowed to do anything else?

Just had another thought - do you work? WTF are you supposed to do, give up work to look after her? Since she can't see too well, she can't sensibly be left on her own all day, can she?

oo, I'm getting crosser by the minute!

[Katymac]

I'm sorry I will respond later/tomorrow - I am SO upset

[treedelivery]

Oh bless you. I have been lurking about, and my heart breaks for you.

ANd naturally am for you too. Unbearable.

[minimu1]

Right Katymac don't get upset you need a plan of action. Lets get the mumsnetters at this!

Go back to your GP without your daughter and explain your concerns.

Ask for a second opinion even if the GP is awkward and patronising.

Demand a scan or the tests that you have researched are necessary to rule out other causes.

If you want us to help you word you request to your GP I am sure some literate Mumsnetter would help(!?)

If you want us all to come to the surgery with you for moral support I for one will.

Go girl - you can sort this despite the moron consultant you have meet

[cory]

Just show me the way to this consultant and I'll come and run him over with dd's wheelchair!

What does he suppose a young girl is going to do with a whole year in which she is not allowed to come to terms with things and not allowed to get on with her life? I have experience of a similar situation and I could tell him a few of the things that she might do if he's not careful .

You must ignore this. As thumbwitch says, being natural and non-highlighting is the way forward. Adopt an attitude of "of course this isn't forever, but in the meantime we need to make sure you are making the most of your life".

We found dd's mobility improved when she was allowed to take a wheelchair to school. Not because hers was actually a conversion disorder (though that was suspected at first), but because even with a physical disorder, tensing up at the thought that you are not going to able to get through the day doesn't actually help you to get any better.

Our conclusion has been that we need to ignore the consultant (who is now making the same silly remarks about ds as he did about dd) and supply whatever dcs need ourselves. They have a wheelchair if it's needed, because I went to a shop and bought it. Crutches are there if and when needed because I've paid for them. I am not going back to ask the consultant for permission to use them.

Some consultants seem to have a very punitive approach to psychological disorders.

[treedelivery]

Get a different consultant.

If you have the energy and the headspace, go to the consultant who heads up the directorate.

Tell them there appears to be a misunderstanding.
Your consultation on the 26th of May seemed to overlook the distress and trauma dd is experiencing, and offered no signposts to you as parents on how to live through the coming year.
You look forward to a consultaton with the lead consultant for the directorate, with some clear plans on how to minimise the distress and trauma this condition is causing.
You also look forward to clear evidence, or in the absence of research based evidence [understandable given the nature of the illness], papers detailing current thinking to support the treatment plan outlined by the consultant seen today.
In the absence of any specific papers, an insght into the theories, thinking and experience of the directorate consultants that led to this treatment plan would be valued. As would any thoughts on alternatives.

Whilst they crack on with that, you can carry on being a stellar mother and wait for the GOS apppoitment too.

[Katymac]

Surely boredom will increase her stress levels?

Can't see school going for non-attendance/non-participation

[Hassled]

Katy - is the consultant actualy making complete inactivity a formal recommendation? Will it affect your Statement application?

My plan would be
a) disregard him/her completely. The conversation never happened, there was no meeting.
b) go to your GP, ask for a referral to someone else. Anyone else. The hospital porter would be better.

[Katymac]

I don't think he thinks she should be at school or if she is at school she should be rocking gently in a corner?

We should just wait & then forget about this year & move on

[wigglybeezer]

I don't know if this advice will help but DH had EMDR therapy (look it up)for a distressing physical symptom he developed as a result of anxiety and stress. It was tried after desentisation and cognitive behavioural therapy only partially worked but it worked really well. He recieved it on the NHS but it is quite new so not many people are trained in how to use it.
Seriously, it is unusual but is not a cranky alternative therapy.

[Katymac]

I'll have a look - Thanks

[Katymac]

Not actually coping with this tremendously well

[treedelivery]

WHo would? Who could? Take it easy, take a night off from coping. x

[Katymac]

I guess - I am (somewhat) controlling & I hate inaction & my inability to do anything

[treedelivery]

Oh bless you. You are a mother. Every bone we have urges us to sort it out, make it better, fight the tigers from the cave. It is very hard to feel helpless, and in this sort of situation even harder. Chronic conditons are the utter utter pits.

[Katymac]

"& she is bright so she will catch up quickly"

That is so unfair - she is bright maths

But she can't catch up a year just like that

[treedelivery]

Well, I think that the consultant can only really provide you with help on the medical aspect of her case.

He clearly has no clue at all about children, families and the dynamics of school and friendship. So lets not listen to his views on those things.

As it happens, his medical management warrants a second opinion, so if at all possible I would try and leave behind todays unfortunate meeting.

Although I think at some point the stress will have to come out, you can't simply store it up forever. For now though, if you can find it in yourself, try to at the whole event, and simply move on to the next medical person. Keep going until you find someone who talks sense. That's what she needs you to do.

I hope this makes some sort of sense. Poor poor you. You must feel utterly lost.

[Katymac]

Thanks - I guess so