Because the neurologists are just shit and don't seem to know and the tests are taking forever (after the last clear MRI actually wasn't clear and DSs right temporal lobe is asymmetrical. But they only found this 4 years later so waking for another MRI test but this is taking forever
Anyway. He seems to respond to heat. Not like having a fever but if he gets too hot with the temperature or if he has a meltdown and gets stressed and hot he will have a seizure.
These can be anything between looking blank and glassy eyed and unresponsive, to having jerks and falling down (sometimes while still conscious and feeling very scared) or going glassy eyed, falling and stopping breathing while making an ugh ugh sound.
He has had 2 clear EEGs and one clear sleep EEG so they have ruled out epilepsy.
Other issues that may or may not be relevant:
He has autism, brought on at age 4 by a sort of brain failure causing a regression of all his skills, except his gross motor skills, which are amazing. He has small brain regressions still once every 6-12 months ish. These are nowhere near as big as the initial regression.
He is doubly incontinent (leaks all the time and can't feel when pooing) and he had Reynauds disease and some skin in the corner of his eye.
He is severely developmentally delayed caused by the initial and subsequent regressions.
He's also the most amazing child I've ever met.
But I really just want to know what these seizures are.
If anyone has or knows of anything similar please help.
This had now been going on for over 4 years and I have no answers and it's killing me as a mum to see them and not being able to do anything or explain them away.
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Children's health
Does anyone know what these seizures could be? Desperate plea for help.
Hurr1cane · 25/07/2014 17:31
Just to clarify I know the neurologists aren't really shit. I've just only got to see one once in the past 4 years and they misread the results 
the new one seemed very thorough but she couldn't give me answers.
Really the funding to the NHS is shit and they're too over stretched and we are lucky to have them. I was just venting a bit.
I have no advice but didn't want to read and run! My ds is 2 and has recently been diagnosed with focal epilepsy and even though we have a name for it it is still scarey when he has a seizure. The neurology consultant we are under has cancelled every appointment she has made for us...every time it was due to her last minute deciding to go on holiday...of course she is entitled to go on holiday but every appointment cancelled!! I understand your frustration. I have found the epilepsy nurses much better and more informative than any of the consultants too. They see children with conditions/illnesses etc all the time but I think they forget that we don't...especially when it's our own precious children it's difficult to know how to deal with things for the best. Hope someone more knowledgeable comes along soon 
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