I am delighted to report that after two consecutive nights of Joshua not sleeping at all, that he has slept last night and is still sleeping now! What a relief as I’m not sure how I would have coped with a third night of a staring, restless boy.
I was frustrated as a couple of weeks ago I had discussed his insomnia with his consultant who had prescribed a sedative for use just on the occasions when he needed to rest but seemed unable to. I had collected the potion from the hospital pharmacy and put it in my cupboard for emergency use, so we had not yet tried it. This being the case, I had forgotten to pack it on our holidays along with his other medications and the night before last is exactly the type of situation when I would have made use of it.
So at 9am yesterday I phoned our surgery to try to find out how I could get a prescription on holiday, ready to have some sedative for last night if necessary , explaining that a third night of sleeplessness would make us both ill. Our home surgery was very helpful and told me to register him temporarily here on holiday, which I did. At 9.30 am I had registered and the local health centre had spoken to my gp to ask them to fax the consultants letter outlining the prescription over. It was all looking promising, except they insisted that I needed a doctors appointment to activate the prescription and I could only be fitted in at 5.15pm!
I tried to argue that it was not necessary but they insisted but did at least accept that I could represent Joshua ,as initially they asked that I brought him along. It was only when I explained that he was non verbal and unwell that a supervisor relented. So I left the health centre and returned at 5 as requested, due to the large amount of paperwork that I would need to complete! That consisted of one form where I recorded both addresses and Joshua’s full name and date of birth. I then waited for 45 minutes in the waiting room and was again grateful that I did not have him with me, as even I was inpatient by the time his name was called.
He was a pleasant doctor and he listened to my tale of woe and acknowledged that Joshua had ‘been through the mill’ since his surgery. As he wrote out the prescription he warned me however, that he doubted that their pharmacy would stock the required sedative. It would probably need to be ordered. I explained that was why I had started the process at 9am in the morning. He replied that they had needed this appointment in order to learn all about our situation and that a receptionist on receiving the fax, could not have known that the drug was rare. He even told me that it cost £144 for a bottle and once opened it only had a 28 day shelf life. I joked that I was not going to sedate my son just to use up the whole prescription , as by now I was losing patience.
I took the prescription next door to the pharmacy as by now it was after 6pm, but as expected, they did not have it in stock. The pharmacist kindly phoned round other local late night chemists but none who answered the phone had it in stock either, all saying it was not a drug they had seen for years! I came home and my husband drove to a supermarket pharmacy , who did not stock it either but have ordered it to come in today.
So we had to manage last night, despite everyone’s best efforts, without the sedative. All the time I was cursing the bottle of this rare liquid that I have at home in my kitchen cupboard, oblivious of its real value!