Reading the comments left by the other members made me realise that the shoddy treatment and disbelief shown by the medical profession to my 13 year old daughter is commonplace.
Since her first episode of ‘numb’ feet and ankles in Sept 06 she has been treated (or should I say seen) by our GP clinic, two different private neurologists, three ED doctors and admitted to hospital overnight with total loss of sensation in her right arm and the side of her face.
The diagnoses have ranged from ‘teenage neurosis’ , a slight case of GBS, a viral illness, obviously a physiological cause due to pattern of numbness, no physiological cause, some type of auto-immune syndrome to a recommendation to see a neuro-psychologist. One specialist told us he could not help us and stood holding his office door open until we left ($100 thank you). What these people seem to be forgetting is that my fit, happy child is now in constant pain and some days can barely get out of bed.
Our next step is to drive to Sydney, over 300km, to see a paediatric neurologist. Hopefully they will have the sense to realise that of course one can feel a toe being moved when it is that hard that there knee is jerking! Trying to explain to a 13yo that they need to say WHERE they can feel sensation not just that they CAN is also very frustrating!! How can we expect anything but disbelief when she cannot feel a toothpick but then says that she can feel a tuning fork. It was only several hours later that she said she could feel it in her ankle not her toe. AAGGH!! the doctor that we were pinning our hopes on is now also recommending a psychiatrist. We did this months ago on the hospital’s recommendation and her opinion was that she was one of the most together 13 year olds she had ever met.
Sorry for such a long post guys but once started a vent can be hard to stop!! LOL