Reflex anoxic seizures – general chat – boards – genes reunited anoxic zone

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MaxiMary

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22 sep 2007 15:17

Hi lee, I know how frightening this can be, and as often as you see these episodes it’s always a shock to your system. My daughter was diagnosed with epilepsy at age 5, she was having 30+ seizures a day. They threatened her/me with a crash helmet and admission to an institution. Mercifully we hung on, she is now 38 with 4 children, able to drive. Still has epilepsy but very well-controlled thank god. Two of her 4 children also have a seizure disorder, not as well-controlled, but they are still going through growth spurts. There are so many drugs available now for this type of disorder that there is a very high expectation of excellent control.Anoxic zone the thing which seems to help both of us cope is to realise that WE are in charge of this seizure business, it is NOT in control of us. For us that puts it back in perspective, our lives are full with many other things, seizures just happen to be part of the mix. Good luck, god bless,mary

Researching:

Davies/morris/rogers/jasper/roberts – N wales; ogilvie – scotland eire; bowden/beer – england; dobbin – ireland; cochrane/ sword/craig – scotland.

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JaneyCanuck

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22 sep 2007 18:57

Hi lee — and first the disclaimer: I would never want to make light of a child’s problem like this, or a parent’s worries about it … But … Have you heard of tennessee fainting goats?Anoxic zone you can see a video of them here: http://www.Youtube.Com/watch?V=we9_cdnpujg the goats actually have myotonia congenita, which seems to be an entirely different disorder from your daughter’s, but the symptom looks similar. The goats fall down when they’re startled. When your daugther is older, and most probably has outgrown the condition, she might find it amusing! A couple of years ago I developed reynaud’s disease, which does something similar to what your daughter’s condition does, but only to my fingers so far: when they’re cold, some imp in my lizard brain decides it’s a good idea to cut off the blood supply to the fingertips so I don’t freeze to death. They turn white and go numb, and then eventually tingle and turn blue and then purple and then act as if nothing had happened.Anoxic zone one of those things you’ve never heard of until you get it, and then people come out of the woodwork telling you that oh yeah, they have that too. Winter is coming. Since I live in a coldish bit of canada (it isn’t really all arctic here!) and can seldom be bothered with things like gloves, and we keep our house very chilly in winter, and I am often found rooting around in the freezer for something I’ve lost, or just chopping up cold chicken, I’m looking forward to many episodes of rainblow-hued fingers in the near future. As long as my nose doesn’t start doing it, I’ll live with it. Now don’t be playing scary peek-a-boo with that daughter!

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MaxiMary

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29 sep 2007 07:21

Hi again lee, just got back here after a few hectic days. Just want to add that I may seem to be strong and to have things in perspective, but please remember it wasn’t always that way. I’ve walked your road, I’ve trembled with anxiety, wept many tears, etc etc, I certainly didn’t develop perspective overnight, I find myself saying, whatever would I do if my life was dull?? In retrospect I realise I’ve learned so many things I hadn’t planned on, and in some small way, hopefully I can now pass on the support which has been given to me, over and over again.Anoxic zone one suggestion is to write a brief journal at the end of each day, sometimes little daily observations can be very helpful, and I found the exercise of writing notes, basically charting on my child’s condition and behaviour, helped maintain my own sanity. That and mashing potatoes vigorously by hand for stress relief !! Best wishes, give her a hug for me. Mary

Researching:

Davies/morris/rogers/jasper/roberts – N wales; ogilvie – scotland eire; bowden/beer – england; dobbin – ireland; cochrane/ sword/craig – scotland.