Thank you very much for your reply.
I will endeavour to further explain Kay's symptoms. Kay has no movement in her legs when awake, but occasionally when she is asleep I have witnessed obvious and large movements from her legs. The other night she turned over and placed her right leg over both of mine. her arms were alongside her head. She normally uses her hands to move her legs. She describes periodic numbness to both of her legs, and this is very intermittent and can vary greatly.
She also has hyper sensitivity; for example about a week ago I used some foot cream I had used several times before, however on this particular occasion she couldn't bear the sensation. I quickly removed the cream with cold water.
The pain originally started in her left lower rib area and gradually spread across her abdomen and across her back. This pain can be very debilitating and often leads to several days spent in bed. She has also recently experienced pain down the length of her spine. During these occasions, her spine is so sensitive that even light finger touches are intolerable.
A neuro physiotherapist Kay is now seeing, has identified contraction and relaxation of her quads. She assesses this by placing a hand lightly on the muscle. Therefore any movement accomplished is very subtle.
I have asked Kay's paediatric consultant on several occasions about the idea of her seeing a neurologist. He consistently replies that this was not necessary as her MRI to brain and spine were normal, together with the nerve conductivity tests,
Kays medication currently comprises gabapentim 300 mg three times a day, paracetamol 1 G 4 times aday, naproxen 250 mg 3 times a day and tramadol and oromorph as required.
Although I suggest the neurologist, the consultant disagrees. He has never offered an alternative suggestion. This attitude has been both unhelpful and anxiety provoking. From the information I have provided do you have any further understanding of the cause of this illness?