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.
Hi Dougie
ReplyDeleteSorry we've been in the middle of the move from Brunei to Perth Oz .
Iv'e enjoyed ( if that's the right word sure you know what I mean ) catching up with how your all doing. I go through phases where I can't look at anything Dysonia related because the pain is too raw and other times where I read and devour all facts I can.
Robbie and Lily are of a very similar age . about 6 months ago her sleep , or rather ability to drop off was also being severely hampered by her spasms. It took us a while to cotton on , Lily being a kid who has always been a good sleeper we thought she was acting up a bit as we've never stayed for long once she's settled. She's also the type of child who doesn't like to be in trouble ,likes to please and is generally super co operative so her being so bad at bedtime was totally out of character. Of course like all kids she has her moments but she is a very easy child. We finally brought this up with her neuros because it was effecting her badly at school etc. She was spasming until 9 30 sometimes later. They suggested a drug which I know ( through my work ) is used as a mild pre med , a sedative effectively. At first I wasn't too keen but gave it a go starting at a low dose and figuring out the timing and a dose that was right for her. I'm happy to say given an hour before bed is working well. I still don't like it but it's better than the alternative. She's started to talk of pain during attacks so if all we can do is eliminate the night time ones then that's a good start. I hope this helps. Take care
Most children's sleep problems happen only occasionally. They are not serious and get better on their own, with time. If they don't, you need to take them seriously. As well as being upsetting, they may interfere with your child's learning and behaviour. There may be an underlying health problem, physical or mental.
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