Sleeping Problems Resolved ? - Aug 21st 2011

After much running back and forward with calls to hospitals, and then the local Doctors, then back to the hospital, then back to the Doctors we eventually managed to speak to a registrar who could prescribe medication to help with Robbie's sleeping issues...

Bit of a long story but here goes, I made the call to the Sick Kids on Monday to try and speak to Robbie's consultant and after being passed from one department to another eventually got through to his secretary to be advised he was on holiday through to the end of August, I briefly went over the issue with his secretary, and she advised she would have one of the registrars call me back once they had finished their ward rounds later in the day, sure enough on Monday afternoon around 3pm a call came through and it was indeed the registrar, she was quite thorough with her questions, and we established that the problem seemed to be due to Robbie struggling to get to sleep and once he was sleeping staying asleep wasn't an issue... She agreed this was an issue and confirmed she would trial him on a low dose of Melatonin (2mg) this was to be given before Robbie's bedtime and would help induce sleep. 

Research online has brought back that this is a natural hormone produced in the pineal gland at the base of the brain. The drug hastens sleep without the hazards or side effects of sleeping pills. 

Then I had to call my doctors, and arrange when the doctor would complete the prescription, the local surgery said they hadn't received the fax as yet, and I was asked to call back the next day... another restless night lay ahead... On the Tuesday morning again I called the local surgery only to be told they had not received the fax as yet, I called the registrar who assured me the fax had been sent and received, and so it went on till 4 calls later the fax was resent and the surgery eventually advised they had received this, I was to pick up the prescription Wednesday morning, sure enough another restless night again !... I did manage to get the prescription on Wednesday morning a Robbie took the medication on Wednesday evening, he went for his bath at 7.30pm when the drug was given, bed at 8pm and he was still awake at 9pm, as I had gone up to speak to him, he did appear very drowsy, and sure enough 10 mins or so later he was fast asleep... fantastic, this was the first time he had been asleep this early in months...

The only downside was seeing him in a what can only be described as a drowsy, semi-conscious state, as it didn't feel right for some reason, but regardless this is being done for not only Robbie's but his siblings benefit also, after long deliberation my wife and I have decided we will only use the Melatonin on nights where Robbie has school the next day, so he will get a break from this.

Other excitement this week was back to school, Robbie at first, seemed reluctant to be going back to school, however quickly changed his mind once the day to return came and was up with the larks for his first day in Primary 2, where a new teacher and old classmates were there, and again we could settle back into a routine.

There have been a few "teething" problems in the first week back, and a meeting with the school has been set up for this week to discuss our concerns as highlighted below - 

Support Teacher - It has come to light the school had advised Robbie's support teachers hours had been cut, and the school had never thought to inform us as such, despite the fact on the last two meetings with the school prior to the summer break I had raised concerns that Robbie may have issues with the changing of classes and teachers, (He doesn't seem to take very well at all to change, I believe this may be another effect of the Dystonia), however as his support teacher (Mrs McDonald) would still be there the transition should be okay as he has a familiar face around... when we arrived on his first day Mrs McDonald was there however informed us she had been told her hours would reduce, and she wasn't sure who would be there in her place when Robbie arrived for school... I called the school regarding this and they assured me there would still be a support teacher, however couldn't advise me who at this stage ? When we arrived the next morning there was a teacher who said she was there for Robbie, but she wasn't sure if it would always be her ? - You can imagine this will be one of my main discussion points at this weeks meeting with the school.

Lunchtime Pick Up - The next day we went to the school to pick up Robbie at lunchtime to find him standing struggling to put on his jacket in the cloakroom unattended, the rest of the class had been taken to the dinner hall, and Robbie was on his own... this certainly upset me as Robbie struggles to stand unaided, and I certainly do not expect my child to be unaided at any time, especially on his own. An apology was given  when I went to pick up Robbie in the afternoon and I was told this was a mix up with times... This is a situation I will not tolerate happening again.

Water Bottle - On Friday, as we were running behind schedule, I got to the school with Robbie, and realised I has forgotten to pack his water bottle, when I spoke to his teacher she stated "well he will just have to do without" !!! I went straight to the school office, told them Robbie was on medication and advised I had forgotten his water, to which the school secretary responded "Not a problem, I will take water through to him" - Why couldn't his teacher have done this ?

Wheelchair - Robbie's teacher suggested to me that I take Robbie in through the office every morning as he has his wheelchair with him, (He isn't actually in it at this time, it is taken with him in case he needs it) I advised I wasn't happy to do this as I wanted him to be part of the class, and line up with his schoolmates at the start of each day, the teacher said "That is fine as long as you are here every morning to lift it in" ? 

Overall, to say I am rather annoyed at the school and their apparent lack of care this year compared to the teacher he had last year is an understatement, and one issue I hope to get resolved tomorrow... I do not know how aware his new teacher has been made of Robbie's needs but things need to be discussed and I have no issue raising my concerns where Robbie is concerned.... Okay folks rant over, and a new week dawns...

School Update - Just thought it best to add an update, we have now been to the school and these issues have been fully raised and addressed... hopefully we have seen the last of these problems. To be fair to the school, they were very quick to respond to my concerns and we are all satisfied the issues have been resolved :)