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 :)

Sleeping Problems – Aug 15th 2011

Again, this week seems to have been a long week, with Robbie still seeming to struggle a bit more than usual.

Robbie is still being severely affected by his arm and leg twitching when he goes off to bed, where originally a hot bath seemed to relieve the dystonic movements for a short while, whilst he dropped off to sleep, this no longer seems to be the case, and Robbie has real difficulty falling asleep in the evenings.

Our hope is this is due to a mixture of school holidays, (being out of a normal routine) and all the excitement of having free time during the day, and the poor weather where Robbie hasn’t been able to get out as much as he normally would during the day to burn off some energy, although with the reasons given above, I am not totally convinced this is the case, and my deepest fear is this could be part of the natural progression of the dystonia… time will tell.

Robbie is back to school tomorrow so at least a standard routine will be bought back into his day to day living, and fingers crossed as he settles back into his routine things will go back to their original state.

My Wife and I will be phoning Robbie’s consultant in the Sick Kids tomorrow to try and arrange an appointment for him to go back and see the specialist about these sleeping problems, as the poor wee soul constantly toddles around looking tired, and is constantly a bit irritable, again this could well be a vicious circle developing as a side effect of the dystonic movements, regardless as this sleeping issue has been apparent for a few months now it doesn’t seem to be getting any better, so feel it best to seek medical advice.

Other than Robbie being affected with the sleep issue we also need to give thought to his siblings as they are not getting a steady sleep routine, as when Robbie is up, that is pretty much the case for the whole family !

In the evening when the twitches start happening Mum will often go and lay down with Robbie, and it is rather sad to hear him saying “Sorry” because his arms or legs keeps moving, it tears on the heart strings to hear him apoligising for something he clearly, really has no control over… again we feel helpless, and struggle to deal with this issue as we cannot help other than reassure him we are there for him for a cuddle when he needs it.

The really ironic part of this small chapter is once he does actually drop off to sleep, the dystonia disappears, and the contractions seem to simply stop.

I am not a religious man, as I have stated previously, but I pray for the days to hurry up and pass quickly so Robbie can get his DBS and some relief from this affliction he has.

Certainly I know there are a lot of children out there, in a much worse condition, however I am sure you can all appreciate as a parent your child is your own, unique, primary concern, and it causes so much pain to see your child suffer in any way…

Regardless when he turns to you and smiles, with his big cheesy grin, your heart melts and you know inside, we will get through this regardless of what comes in the future, we will be with him every single step of the way.   

Message To God and Skydive - Aug 7th 2011

Here we are a week down the line since our return from the Evelina, it has been a long week, and Robbie seems to be struggling a bit more than usual with his mobility since his return to Scotland.

I think this could be due to a variety of reasons, from the initial anti-climax of leaving the medical environment where he was constantly given full focus and attention, to going back to the home environment, where perhaps the focus needs to be more shared amongst all the family, alternatively it could be due to the hotter than normal weather taking it's affect on the Dystonia, then again, maybe it is just appears this way as we are now more aware of his dystonic movements, and the effects they have on his stability and mobility.

He has also had a few outbursts this week, and seems to be mainly down to him becoming more aware of his inability to perform everyday things as quickly or efficiently as his peers... this seems to lead to frustration within Robbie, and he does seem to be becoming more prone to quite angry moments. Patience has to be the key here, although it can be difficult at times to remain patient...

I would like to share a perfect example of self frustration Robbie is currently experiencing, early in the week Robbie was playing with a mobile phone, and a very interesting and thought provoking small discussion took place...
Mum asked "What are you doing"
Robbie simply replied "sending a message to God"
His Mum then went on to ask, "Okay, and what are you saying to him"
Robbie replied "I am asking him why he gave me twitchy arms and nobody else has them"

As you can see, from the above very short conversation, Robbie is obviously very aware he is a bit different from other children his own age, and this is really affecting him. I am sure through time he will come to terms with this, however it is painful to watch him becoming more aware of his condition and difficult to cope with both from his perspective and from a parent's perspective... Roll on DBS to try and help him on this aspect and allow him a bit more movement and control.

Overall Robbie is still getting along reasonably well, and no other problems to comment on at this moment in time.

Yesterday (6th August 2011) the whole family attended a skydive arranged in aid of the Dystonia society, the jump was done by a family friend (Jill O Donnel) who kindly arranged the jump, and went ahead and took the plunge into the big blue sky from 10,000 feet. (Braver than me by the way)

Not sure how much has been raised in total as yet, however this will be updated when we have the final confirmed figure. Hats off to Jill for taking the plunge, as similar to ourselves she was totally unaware of Dystonia prior to Robbie's diagnosis.

Other than this, it has been a relatively quiet week, apart from the standard back to school shopping for Robbie, as the schools go back in a couple of weeks up here. Looking forward to it as this occupies Robbie's  mind and keeps him busy...

Still no confirmation from the Evelina on a date for the DBS as yet, to be fair I didn't really expect to hear this quickly, however cannot help but feel a confirmed date on paper would make this process much easier to deal with as it would give us a confirmed date to look towards.