Moorfields

The World Famous Hospital! Specialising in disorders of the Eye!
Yesterday was Joshua's 3rd visit there and each time his vision has deteriorated, last visit in August His Visual Acuity was 6/150 best corrected. This intiated the Consultant to register him as Severely Visually Impaired / Blind. The document came over the weekend so we came home to them.

Yesterday his Acuity in his right eye was 6/190 and in his left eye 6/263.

Both Joshua and I had Electrophysiological testing to check all the miniscule areas of vision. Mine was fairly normal....whatever that means. Joshua's however werent. In the words of the consultant a Professor no less. Joshua's testing was fundamentally abnormal! However nothing really pointed directly in anyone direction. The pictures of the back of his eyes showed pigmentation and bright spots and Attenuated blood vessels, some areas were suggestive of Choroideraemia yet the overall photograph did not shout out this is the retina of a patient with Classic Choroideraemia! The electrophysiological tests showed differences and defficits in the Rods and Cones, suggestive of X Linked Retinitis Pigmentosa, yet doesnt really shout this is the EP of a person with classic X linked RP.

I did ask if it was possible to have an overlap of both diseases? he was pretty dismissive saying it would be one or the other. I have to say I am not convinced, I have overlap of autoimmune diseases, and David has two concurrent diseases of similar origin. so why could it not be?

Anyway, it seems that all of his results contradict each other, and the electically acheived Visual Acuity suggested better vision than he actually has. There is apparantly some eye conditions that can cause that but nothing has shown that indicates any of those!

I do vaguely remember similar conversations happening when my eldest brother lost his vision, Which sparked the conversation with the Prof about him seeing one of my brothers. I know we asked them all back in 1999 and non of them were keen to go through it all again. Howver I have emailed the two I do have contact with and will leave it in their hands, I can understand them not wanting to go through it all. Yesterday was bad enough for us.

We know that nothing can be done for Joshua, this is more about ensuring that anything that can be done for his children can be identified.

The bright spot in yesterdays trials was meeting up with Tia. We had planned it as just that, meeting up and spending some time together, having lunch together and just enjoying one anothers company. Then the appointments arrived and they wanted me to have these tests too and I couldnt take any other children with me, but had Eve! David had to go with Joshua which left us with a dilemma that Only Tia could solve! So instead if sitting it out in the waiting room chatting over all our thoughts and concerns, we deserted Tia in the waiting room and headed of for hours if boring flashing lights whilst wired up to electrodes including ones in oour eyes....really not comfortable. Then being told to open eyes wide whilst the technician pured a gallon of pure acid into each eye!!!! She insisted it was just a few drops of eye drops but it was most certainly at least a gallon and stung like crazy! (me? A Whimp? Surely not)

Anyway these tests went on for so long that Tia had to go and so Eve wsa manouvred into the cubicle alongside me in pitch black. whilst the testing went on. I was seriously fed up by now and ready to tell the technician to forget the rest, but I resisted and continued to the end.

I did however refuse to trapse back over to the adult hospital for photographs of the back of my eyes. Knowing they did Joshua's photos right here in Children's I asked that they did mine too. I was really struggling to walk yesterday and was not prpared to do more than was absolutely essential. After a little debate the technician did go and ask for me and they called back the photographer and he did them there at the Childrens unit.

We eventually left the hospital a little before 6pm got a taci back to Kings Cross and had the time for a hot drink before requesting the assistance on the train and being led to the platform before it was announced. There was no wheelchair space but Eve fitted nicely between two seats and David and Joshua got the ones opposite, I managed to secretly put my feet up on the seat behind Eve! Bliss!
Arriving home at 9.30 pm 131/2 hours since we left we were pleased to discovere everyone else had had a good day.

So now back to the battle to get school to begin to look at things from Joshua's point of view. The SENCO at school was by the door when I dropped them off today and I managed to have a few words about him dropping Art and PE. It has been agreed and i just need to put it in writing to satisfy Ofstead.
There is still more emphasis on Joshua developping coping and organisational skills and not enough on the staff getting to grips with how to best make the lessons accessible to him.
For now though it is all about trying to help him to make the most of what vision he does have. Ensuring he is not gettin to down about everything. And giving him the opportunity to be a 13 year old boy furst and formost.

Meanwhile I have some concerns about Christina I cannot expand on, prayers for her would be greatly appreciated!