Hi, I've just joined this community. I have a 3yo daughter with global developmental delay and mild hypotonia. since she was a baby, whenever she'd have a fever we noticed that she was unable to hold her head upright. it would fall to one side or hang down like a newborn baby. she started crawling and sitting at 13mo, walking at 2y and 7m. her walking is very clumsy. she doesn't have a wide base but she never walks in a straight line, always kind of wobbly. she falls A-LOT!!! she used to fall every few steps, now she only falls every few minutes. if she's just getting out of bed in the morning, she falls as soon as she starts walking. Whenever her fever goes up - the ataxia gets worse and so does her hypotonia (cannot even sit unsupported if the fever is very high). doctors have taken metabolic tests recently, at the time she had a fever and ataxia got worse. We are still waiting for the results but her neuroligist is suggesting she has episodic ataxia.
Anyone here with episodic ataxia who can tell me a bit about it? does the ataxia/clumsyness appear between episodes? can it start from birth? does it usually involve global developmental delay?
I'm not sure this doctor is right, the ataxia is there all the time but she is somehow managing it. when she's sick - all compensatory strategies are lost.
is there anything we can do to help her? so painful to see her falling so much