I received the letters through the other day from the paediatrician. She has written to quite a few people and really is worth her weight in gold.
I now know the GP has the letter stating she is to prescribe melatonin. The blood test forms (there are loads of them as she is testing him for lots of things such as thyroid (for which I suffer from), diabetes, iron level, liver, the Smith Magenis, and so on) I now have in my possession.
She has asked for the Occupational Therapist to contact us to arrange the soundproofing on the top floor so that J can go back up there and not disturb the household when he is jumping around. Now although she has written to them, does not mean I will hear a peep. We are still 'at the top of the waiting list'. I have been given that line for what seems like years.
What will be a huge ordeal for J is the blood tests. They have decided that he will have them done fully concious at the children's clinic. Oh how I wish they would take me seriously when I say that he will not allow them to touch him, let alone keep still, have a band wrapped tightly around his upper arm, and a needle inserted into his vein, with several vials being used to collect his blood.
His one and only blood test in his life was at age four (ish).
There we had to go along to a special childrens clinic again.
There we learnt just how strong he was.
It was me sitting in the chair holding him on my lap. His father kneeling on the floor holding his legs together to stop him kicking out.
A nurse either side to hold him straight. A plebotamist to try to extract the blood.
Then another nurse came in to hold his head still.
And another came in to hold what ever other body part he was moving.
He had turned beetroot in colour and was screaming.
So change of tact.
Let's extract the blood from the wrist.
Repeat the same scenario as above.
So they moved on to his thumb.
It took half an hour to get even a quarter of the vial filled with blood which was squeezed drip by drop from his thumb, all the while he is still screaming.
I have the appearance of a wrestler - all sweaty and bruised.
J is now a shade of purple.
I vowed never again.
And now as J is nine years old he is even stronger so will be fighting even harder.
So here I am again. Battling for someone to believe me that he won't allow any blood to be taken from him unless he is sedated.
But because the childrens clinic are so good with this situation it will be fine.
Oh yes, because J will sit and watch a DVD on the screen and not realise that there is a metalic sharp pointy device headed for his uncurled arm. And yes enough soothingly patronising comments are really going to make all the difference to a child who has no idea what you are explaining to him and no idea what the hell is happenening, apart from a lot of noise, lights, the smell of medical equipment, lots of chatter and me trying to keep him calm and still - and that is before we enter the room of doom.
So it is with trepidation that I take him for these tests. And no doubt we will then be told he needs sedation.
Got to love the time wasting eh?!
