Hello everyone I'm new to the site but hope someone with similar experiences reads this.
I have one adorable 4 yr old girl - result of IVF,horrendous pregnancy - lost twin, hospitalised twice, emergency c, prem, you name it - and she started having odd turns last autumn. Strange hand/arm movements, moving her mouth, staring and being unresponsive throughout. An EEG was normal and it seemed to go away but this summer we started seeing more episodes and some different types. These include walking around in circles moving arms etc, sudden jerky movements whilst grimacing, hand wringing etc. They don't last long (10-15 secs typically) and can happen 4/5 times a day or not at all. Usually its when she's tired, under the weather or not absorbed in a task - so often during meals as she is a tricky eater who often can?t be bothered with it. In every other way she is normal, bright as a button, incredibly confident and social with loads of friends and a busier social life than us (sound familar!)
We are waiting for a sleep deprived EEG which I dread - as she doesn't need much sleep its going to be a looong night for us keeping madam up and amused until 1pm the following day when we go for the test!
We are worrying so much and wondering whether to go private to pull the test forward - one imagines all sorts including other brain defects (caused by the horrible pregnancy or masses of scans I had) or worsening epilepsy if thats what it is.
I realise this may seem mild compared to much worse things many parents have to face but they are all so precious and it would help to hear of any similar experiences. Anyone know of a good Paed Neurologist (she's just under the local Paed at Kingston Hosp). Anyone with a child with diagnosed epilepsy on the drugs?
Eternally grateful for any info at all.
Thanks so much!