Down in the Mouth

Towards the end of last year, Joshua stopped eating and became painfully thin – he is already slim built, but he became very ribby and his hip bones stuck out sharply. We took him to the GP and tried to tempt him with all of his favourite high fat foods and , as a last resort, had his teeth checked out at the dentist. It is so hard when your child is non-verbal, it is necessary to be a detective to identify what might be hurting and how you can help.

On the last day of  term before breaking up for Christmas, we took him to his special needs dentist. It took three of us to hold him still so that she could look inside his mouth for long enough to identify the problem. She diagnosed oral thrush – which  she said would feel like sandpaper in his mouth, making eating unpleasant – and she found that he had cavities and gum disease. We came away with fluoride toothpaste,  an anti fungal prescription for his thrush and a strong sense of guilt that we had neglected Joshua’s oral hygiene. I had brushed his teeth, as best as he would allow, in the bath all of his life, just once a day maximum and now he was paying the price for my neglect.

We now have a much better dental routine : we have invested in electric toothbrushes for home and school and his teeth are now cleaned, of a fashion, three times a day using fluoride toothpaste. He now has his bedtime medication in sugar free yogurt, rather than chocolate mousse and he drinks more water than sugary J2O, which was his drink of choice. So we are doing all that we can, albeit his 17th year will be the first year of his life when we have taken oral hygiene as seriously as this, before then, if I am honest , his seizures and lack of sleep took precedence over his teeth. But now that his seizures are reasonably well controlled and he has never slept better, it is time to focus on his teeth:

Joshua will need to be sedated for them to properly assess and clean his teeth and to fill the cavities, and so he was referred on 22 Decemeber 2017 for that treatment.  Now almost 7 months later, we are still waiting for that appointment! I chased his appointment yesterday, only to be told that he is on the waiting list and that some patients wait for 14 months!!! I told her that I was not waiting that long when it was a child who was not eating and was in pain, what kind of system is that where that is acceptable. So while I can chase as a parent, I have engaged the support of his social workers,  school and his paediatric consultant. We should not have to go to these lengths when he surely has a basic human right to be looked after and not to be in pain?

Caring is bad for you?

My sister told me that now that I was over 50 years old, my body would start to let me down and ‘bits would drop off!’ . While nothing has dropped off exactly, this year I have had two warnings that I am indeed getting older: back in May, my calf muscle was giving me a lot of pain and after I had to crawl up the stairs and could barely walk, I reluctantly saw a Doctor and immediately he told me that I had torn my achilles and that it would be 6-8 weeks to recover. He showed me some exercises to stretch it and told me to ‘listen to my body’ and rest when I needed to.

I discovered that two things eased the pain : a hot bath, so I was having two of those a day, and raising it up when I sat down. It would get more painful if I had not rested it enough, until I was forced to sit down. Since having a torn achilles, I realise in caring for Joshua, how little I sit down before he is in bed at 9pm and at how often I need to run up and down stairs too. So I have become more organised and saved up trips upstairs, rather than going each time I needed something, or I have asked my husband to fetch and carry things for me more. But being in a caring role, really is not conducive to sitting around with my leg in the air.

At the  same Doctor visit, I had blood tests done and they showed that I am pre-diabetic – meaning that if I do not change my lifestyle, I will becoame diabetic in the future. This news struck me hard and I immediately began taking more exercise. I had got into a routine if coming in from work and spending the evening caring for Joshua, eating my evening meal, bath then bed and there was no room for exercise in that weekday pattern.

At the moment ,I am awake and up early in the mornings, full of energy. So I decided to harness that energy and now, on three days a week, I cycle 1.5 miles to our local leisure centre ready for them opening up at 7am. Then I swim for 35-40 minutes and then I cycle home again, getting home for around 8am, where my husband has got Joshua fed and dressed. I have now been doing that since early June, so this is my sixth week of this new routine and it suits me very well. Unfortunately swimming makes me very hungry afterwards, so I have seen no real weight loss, but I am certainly fitter than I was.

The Doctor will monitor my blood sugar levels in 6 months time and the nurse thought that if I could exercise more and reduce my carbs – that is a tougher ask! –  that I would be out of the pre-diabetic zone. I have found time in my busy week to slot in some exercise that I enjoy – I am a fair weather cyclist so I will not be cycling there in the winter or when it is raining – which has to be a good thing. Even to be released from dressing Joshua everyday is a bonus.

I am not blaming Joshua for either my torn achilles or my pre-diabetes, but as his primary carer, I know that I need to keep fit and well for him as long as possible, as he needs me.