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