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?