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Help/advice please - Simple partial seizures in 2 year old son
Thu, 03/22/2007 - 13:40Topic: Parents & Caregivers
My 2 year old son has simple partial seizures based on a history diagnosis only. We are on a waiting list for an EEG, MRI, bloods and Neurologist appointment. Despite weekly hounding its been 2 1/2 months and still no appointment date yet!
The Pediatrican is putting him on Tregretol tomorrow as his seizures which started at about 18months have increased in frequency from one evey 4 weeks to every 2 days and often in clusters. During a seizure he is conscious, his eyes flicker and his head turns, eyes well up with tears. He is very scared and cries and remembers the seizure afterwards.
His behaviour has started to change - he's being naughty alot. I dont know if this is because I dont want to tell him off (having trouble as I am worried that I may upset him and bring on a seizure) or if it is because he is 2 years old (terrible two's) or if it could be related to the seizures?
I guess I want to hear from anyone else who has had a child with partial seizures or has it themselves. I have read too much information online and have frightened myself that his seizures are symptons of a debilitating syndrome or brain trauma of some kind.
Any advice please?
Comments
Re: Re: Help/advice please - Simple partial seizures in 2 year o
Submitted by Ryansmum on Thu, 2007-03-22 - 14:52
Thanks Barbara - Im a Barbara too - Barbara-ann actually!
Im in London. I have called Ep Action the site for the UK and they told me to get tests done and are sending out an information booklet. But we have to go through the national health system as we do not have private cover and cant take out private cover for this now. Still as the UK is part of the Eu I will fly to Paris if necessary to get an appointment as we are meant to be one big free flowing happy family now! The health system here is a joke.
I am so worried about my son. Have been very strong until now but broke down over the last 2 days. I will let you know how my appointment goes and call on you for advice if you dont mind.
Thank you
Ba
Re: Re: Re: Help/advice please - Simple partial seizures in 2 ye
Submitted by bmcmullin on Thu, 2007-03-22 - 16:41
Barbara in Houston
Barbara Anne here...at your beck and call. You must at leat try the ketogetic diet...it really works.
Re: Help/advice please - Simple partial seizures in 2 year old s
Submitted by bmcmullin on Thu, 2007-03-22 - 13:59
Barbara in Houston I'm 49, had sz since 9. My son has sz's too. Allow me to communicate what we feel like after a seizure (called post ictal) I had a sz this a.m. I feel like a hatchet is burried in the center of my head, my forehead feels like a frying pan hit it. My calves are extremely sore from the contractions. My mood is "just let me be". About the neurologist...what city do you live in that there is only one neuro. In Houston we haveto very comprehensive epilepsy centers. I checked into one last Oct. to see if I could get better control for sz or an operation...so far, nada! Get another Neuro, call it an emergency...I would, you are your childs only advocate. I'm here for ya, bmcmullin@houston.rr.com Best wishes or a bright and happy day, Barbara