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

[Katymac]

I think GOSH will test her properly

[thumbwitch]

So from this it appears that no one is planning on doing any neurological testing or scans, would that be right? They've now accepted that it's conversion disorder and they're going to carry on with that diagnosis without further challenge?

Hmmm.

Let's hope they're right then - personally I would have ensured by elimination that there was no neurological cause. But then I'm not a doctor constrained by budgets (or arrogance!)

[Katymac]

Apparently the CAF came to the conclusion that 'I need support too'

God knows where from (apart from here)

[treedelivery]

I wouldn't be doing too good either. How stressful.

[Katymac]

So, actually I'm not doing too good

[Katymac]

As always I am channelling my rage into action......written action admittedly

"DD - Visit to P Hospital 27.05.10.

Mother and grandfather accompanied DD to the hospital. A series of tests were undertaken, which appeared to be similar to previous tests: to check the physical configuration of the eyes? structures and to test the eyes? reactions to stimuli and motor movements (my terms). The results were to confirm that the eyes were normal and behaving in a normal fashion.

The consultant confirmed the arrangement for DD to attend at Great Ormond Street Hospital for a second opinion and further tests. These tests would appear to be a check of the eye signals passage to the relevant brain centres. It would appear that these tests would normally be undertaken on a first reference to GOSH. Getting them arranged between J and N appeared to be a less than ideal arrangement. Notwithstanding, we think we can accept that the additional testing is very unlikely to change the current diagnosis (Conversion Disorder). The reference may however allow a new insight that might be helpful.

DD was wearing her prescribed glasses. There was no criticism of this but the consultant?s opinion was that they were unlikely to be effective.

We explained to the consultant the arrangement being made to enable DD to continue at school. He expressed some disquiet that additional procedures (medical) and the kinds of support that DD needed at school all mitigated against the most effective response which was to create in DD?s mind (consciously and unconsciously?) reassurance that her problem was temporary. At this point we said that taking all this as correct it left us with a problem in establishing an effective coping strategy. Accepting this problem the consultant indicated that we were moving outside his field of expertise. We suggested that CAMHS might be the right reference point and he agreed. That final new piece of information is that the potential time scale before DD recovers her sight has now moved from a few days, 2 or 3 weeks, a month or 2, to a year.

DD was party to these discussions. We are stuck with the problem that she gets angry and distressed if she feels information is being kept for her. We took, and will take until advised otherwise; the view that more worries are created by her not knowing than otherwise.

Outside the hospital we conjectured that we are now ?between a rock and a hard place?. If DD is to attend school in any normal fashion then the interventions and support are essential ? if only on safety grounds. To remove DD from school even with private tuition is likely to create even more stress by cutting her off from her friends and normal activities.

DD - Coping Strategies

DD has a diagnosis of Conversion Disorder affecting her sight. It is difficult to tell how severely her sight is affected and the impairment may fluctuate. It appears that she has more peripheral vision than central vision. She will react automatically to movement; for example, she will try and catch or ward off a thrown object coming from the side. At times we believe she has ?seen? but is not aware of having done so but her reaction suggests she must have ?seen?.

She appears to be remarkably accepting of her sight loss. It clearly concerns her but her reaction to it is much more muted than we would have expected. Mainly she is concerned that it stops her doing what she wants to do.

We wonder about the value of continuing to try and discover a stress or trauma source. Nothing definitive has come to light so far. In this as in all things, however, we accept the rightness of having to take the advice of others.

Our most pressing need is for us and DD to develop some coping strategies. If, as the consultant opines, almost everything that signals her out to herself as different from normal is counterproductive what do we do?

We have considered such things a sending her away with favoured relatives for a short break to get her away from the influence of our stress. Her Mother has managed to arrange for her to continue with her sailing course: the potential loss of which she was very unhappy about. We are almost sure that her continued attendance at school is in her best interests. Right now, as far as possible we are trying to keep her in her normal environment and doing the things she likes and is used to ? and just hoping that we are getting it right!

Would hypnotherapy help or psychoanalysis? How far do we make allowance for her anger and any difficult behaviour (not that the display of these seems other than normal)?

We seem to need reassurance and confidence in our actions as much as DD!"

Writing is good

[treedelivery]

How are you doing today Katymac?

[Katymac]

It really wasn't unhelpful & it has lead me on to other similar therapies - we will see how it goes

[thumbwitch]

EFT is used for PTSD as well, wiggly. But from what I read, there is a fair amount of crossover between EFT and EMDR anyway.

OK, I take your point about crystal pyramids etc.; I did a significant amount of training, I feel, with significant exams (they certainly bloody felt it!) so hopefully don't fall under your "cranky" categorisation. I have met some very weird and wonderful people at exhibitions etc. who make me go in a big way as well...

I thought I'd better point out that in EFT and NLP, there is no need to focus on anything to do the eye accessing stuff - the movement of the eyes is enough.

[wigglybeezer]

I actually think there was a face tapping element to part of DH's treatment, I wonder if I'm getting mixed up (he did say it was a treatment used for post traumatic stress). DH is a bit rubbish at remembering exact names of things and this was a few years ago.

I'm sorry if cranky upset anyone, I was brought up in a plain speaking medical household (although Dad used hypnotherapy and acupuncture on his patients). What I think of as cranky are therapies done by people without significant professional training or any testing ie. sitting under a pyramid of crystals. Mind you some of them are quite relaxing and are probably harmless except to the wallet.

Incidentally A friend swears by INLP for her DD, I find it difficult to understand how it could work but I do try to be open minded with such matters these days especially since such a weird sounding treatment helped DH SO much.

Katy, I'm sorry if my suggestion was not helpful, I thought your DD had some sight ATM and didn't realise that she wouldn't manage tracking.

Some Doctors think it is their job to dish out hard truths (as they see it) without any softening empathy. I think some of them really don't care how they make us feel or what we think of them (especially male consultants) as long as they can make us do what they think is the right thing. It can be very tough to stand up to.

Keep your chin up.

[thumbwitch]

it's probably EFT (or possibly TFT) - that also uses eye access modes as well, iirc (I did it for my DS when he had the Fear of swimming).

Recommendations are always a good way to go.

[Katymac]

I'm sure my reflexologist knows one & actually I think she knows something about EMDR or something similar (in it's tapping forms)

[thumbwitch]

Ok, hasn't come through yet but it might take a while to arrive - I will keep checking.

There may be others who are INLPTA qualified who aren't on the register (usually one has to pay for being on the list) - not sure how you'd find them without looking through your local phone directory. here's a list of ones in Norfolk - if there is one near to you, you can check whether or not they are INLPTA qualified (I don't know much about any other organisation, I believe INLPTA is the best qualification there is but I've been out of it for a few years so could be wrong)

[Katymac]

I've catted you - but there are a variety of normal stress situation present in a majority of children's lives

Only 1 NLP in Norfolk

[thumbwitch]

katy, apologies for asking this again (you may have already answered it and I missed it) but what, if any, of those 'causes' apply to your DD? Was she stressed at school? Had she recently been excluded or blamed or bullied for something? Is there stress at home?

It's all very well them saying she has conversion disorder but they have to have some reason for it as well (as in the case studies)

The intervention plan you have C&Pd makes perfect sense when they believe that the parent is contributing to the problem. Removing the parent can reduce the problem - either by removing the cause of the stress or by removing the one person who refuses to believe it is "in her head".

I still think NLP therapy would be a good way forward for your DD - if it is conversion disorder it's a very good way of altering her behaviour patterns at an unconscious level and "fixing" the psychosomatic response.
Up to you of course. To find an NLP therapist, look here

[Katymac]

Dear god - I just read this "Intervention begins with an acknowledgement that the young person has a real illness which has seriously disrupted normal patterns of living. The presenting disability should be regarded as a symptom reflecting unconscious conflict. Wherever possible the child should be admitted to hospital, preferably with some limitations on parental access. This may prove difficult in view of current ward practice but it can often be achieved by reference to the child's age and normal level of independence and by firm reassurance that the nature of the illness does not justify a 24-hour parental bedside vigil. In many instances this will serve to remove the patient from the conflict that led to the illness and will also lessen the effects of parental lack of cooperation if this is an issue."

From here

[Katymac]

Reflexology in 4 hours & I can't wait

My only issue with the "Eye movement desensitization and reprocessing" is that it talks about following/tracking an object & DD can't do that atm

[thumbwitch]

Wikipedia's entry on EMDR is verrry interesting. Looks like it could be a useful thing to try, katymac - although the eye movement component of the treatment has no explanation in Wiki, it seems to me that is being used to access the different parts of the memory see this article about it. I guess wiggle would count NLP as a "cranky" therapy (a term I find fairly rude but hey) but believe me, it can have stunning effects.

Tree is right - you need to look after your own stress levels as well - ongoing stress is not good for you, especially if you are trying to keep a lid on it for everyone else's sake.

[Katymac]

Thanks - I guess so

[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]

"& 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]

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]

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

[treedelivery]

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

[Katymac]

Not actually coping with this tremendously well