I’m quite good at answering people’s questions when they telephone the Pernicious Society’s Office, after all I do have eleven years’ experience in dealing with members’ problems with getting a diagnosis and adequate treatment. But I took a call last week which not only shocked me, but left me unable to offer any help. That’s why I’m writing this – I’m hoping that one of you will be able to offer me, and the caller, some advice on how to deal with this particular issue.
I have never known the joys of parenthood – a decision I took when I was fourteen. With twenty odd years of teaching other people’s children I am aware of the challenges that children bring with them and I’ve never regretted that decision that I took all those years ago. This particular problem involves a young child which I have been unable to help with, hopefully you can advise me.
The call came through on Wednesday last. I had spoken to the lady before. Her particular story is bad enough; it took ten years for her to be diagnosed and she has been left a shadow of her former self as she struggles to cope with everyday life and has lost her business that she had built up over the years.
She has two children, one is two years old and the other is nine. The call was about her nine-year-old who has had problems in the past including development delay. The mother, concerned that her children might also develop Pernicious Anaemia is vigilant for the symptoms. He is still night-time incontinent and wears nappies to bed which is worrying enough. When he started complaining about feeling tired all the time the mother asked her son’s doctor to test his B12 levels. Guess what? The results showed he was deficient with a reading of 140pm/L. The laboratory’s reference range is 180 – 900pm/L – so he is clearly deficient.
Now, I say ‘is’ clearly deficient because he still is; the GP told the mother that the readings were perfectly fine for a nine-year-old and refused any treatment. And that’s why the mother telephoned our helpline.
“I really don’t know what to do” she told me. “Should I go ahead and treat him?”
And this is the dilemma that parents face in such situations. Firstly, she would be ignoring medical advice based on the GPs clinical decision and that wouldn’t look too good in any court proceedings. Secondly, if she was to administer injections then not only would she be guilty of assault and perhaps Grievous Bodily Harm, but also there is the danger that the child has a severe reaction to the injection in some shape or form including suffering an anaphylactic shock which would require urgent medical intervention. There is the option of using alternative delivery methods such as patches, sub-lingual tablets and sprays, but again, this could be seen as going against medical advice and possibly abuse of a vulnerable person.
However, doing nothing will almost inevitably mean that the youngster’s health would deteriorate with the very real chance that he will develop serious and irreversible nerve damage.
I really am at a loss to offer her advice. She has spoken to a personal friend who is a practicing Paediatrician who, rather unhelpfully told the mother that the GP was ‘a fool’ but could offer no other support.
I spoke with the mother again yesterday and suggested that maybe there are other mothers out there who have faced the same problem and that, in the hope that there can be a positive outcome, I might write this blog to invite my readers to offer some advice. Please keep any comments positive and avoid making any comments on the GPs behaviour. We, that is the mother and I, are really hoping that someone might offer a solution.