Fighting Tooth and Nail

Just to look at C’s teeth and cut his nails.
The day went as i thought it would apart from a slight detour! 

The best interest meeting had gone well. We had been referred to a private hospital because it is smaller and quieter. Through the Challenging Behaviour Foundation parents email network it had been suggested to use Rohypnol as a pre-anaesthetic as you can’t taste it, smell it, it knocks you out and you can’t remember. Perfect. But in the UK it is not licensed, if you have an understanding GP you can get it privately. C’s GP agreed, a week later changed his mind. He also wouldn’t give permission to do a blood screening (haven’t a clue why?)

The hospital wanted C to go in and have 3 MRSA swabs (underarm, groin and nose – I don’t think so!!) and they wouldn’t believe C’s manager that there was no way C would allow this intrusion, they were adamant as they had much experience of autism before!!!! This is when the label autism isn’t much use as people have general pre conceived ideas.

C went to the pre-op meeting with an entourage. Me, key worker, home manager and the service provider’s psychologist. So I felt well supported. We had agreed beforehand that we would not restrain C as this is just too traumatic for all.

Again they went on about the swabs, I tried to explain about the intensity of C’s SIB but it wasn’t until our psychologist said firmly he could fracture his skull that we got through to them. They were very good after that!! C also did some happy head banging which shocked them which also helped. They also didn’t agree to the rohypnol, but did agree to taking blood and cutting his nails.

The day of the op soon came. We gave C 10mg diazepam before leaving the home. C was going to be first on the list but because no MRSA swabs he was last so we had to wait. Wasn’t too bad as C was oblivious to what was about to happen. 25mg of midazolam was given to C in a drink – enough to knock anyone out. But not C!! He had other ideas, as soon as he had finished the drink he looked at me and then ran and lunged at the wall smashing his head, he did this again and again and again. I tried in vain to distract him, stop him to no avail. He wasn’t going to stop. I looked at the psychologist through tears and we all agreed to leave.

We walked out the hospital. Shocked hospital staff chased after us. (Like a scene from Benny Hill I can sort of laugh about this now but at the time it was very serious) Got in the car as staff tried to talk us into staying as they were worried about C’s breathing, C continued to head bang, so we drove. C calmed and was now fighting tooth and nail to stay awake. The hospital phoned me on my mobile and we went back to talk to them. The consultant and various staff were waiting for us at the road side. I agreed to give it one more go as apparently now 40 mins on the drug was at its peak and they assured me that C would not remember, and I didn’t want to put C through all this again another day. A wheel chair was brought out as they said C would not be able to walk. I opened the door, C got out and walked! Much to the amazement of staff. He was pliable enough now to let us guide him straight into the theatre where we held a mask over his face until he did eventually pass out. We were ushered out.

Didn’t have to wait long till we were called back. Blood had been taken, his nails were short (looked weird) and they had done 1 filling (which could explain some of C’s unexplained SIBs?) there was also some erosion on his back teeth from reflux. But after 21 years of not being able to brush teeth and poor diet – quite impressive. The consultant said because of the ‘trauma’ to Cs head he would recommend a referral to a ……… dermatologist?!! And C would not have to come in to visit a dentist again – the dentist would go to his home annually. So maybe they did learn something that day?

We were then told C would sleep for the rest of the day because of the amount of drugs and GA in his system. Half an hour (I held C’s hand for a whole half an hour :))))  ) later C was awake and up. We were out of there!

So we got there in the end, but at what cost to C’s head. It’s frightening and left me feeling emotionally exhausted for a couple of days. How it made C feel I can’t imagine. We have to do this again in 5 years. I will push harder for rohypnol next time. Has anyone any experience of this – or anything else that would work better?

I really hope they are right and C won’t remember.
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Jen Shrek

Mum, advocate and #ActuallyAutistic challenging the system.