I wanted to share this article (click title above) as it is an interesting view from a Neurologist at Harvard about patients with Epilepsy. In case you didn't know, Epilepsy is often referred to as "E" in the world of those affected by it.
And, although I don't link to it, this is it! My home away from home, my support group, my friends, and fellow warriors again the E Monster! This is the place I've met Lily, Langan, Jason, Cloe, Jake, The Champ, and many others. I'm glad we've caught the attention of a doctor at Harvard... Who knows, maybe our doctors will start listening more to what we are saying, and will trust that we can understand!
I've always kept this place a secret. I consider it my own private and confidential support group. However, this is the first link I recommend to someone who is new to Epilepsy. There should be a place like this for all afflictions in the world, not just the Neurological ones.
Well done!
Tuesday, August 23, 2005
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4 comments:
Sorry, I'm dense... I don't see the article and you mentioned you didn't link to it here. I'd like to read it. Thanks.
The title is the link, click on that.
Wow! It's amazing to see that physicians are taught that we can't understand the complexities of illnesses/diagnoses, and it's wonderful to have such a champion advocating sites like the one you have here, and the ones you participate on. Congrats on making a difference, not for just all those with epilepsy, but for all patients who seek to take control of their healthcare!
Hi Kelly, I wanted to thank you for sharing your experiences, learnings and emotional journey so freely. This is the first time I have written to you, but I have been observing, learning and gaining strength from your posts and others. I came across your posts at "Kidsepilepsy" and from there met Lilyanna and Danielle (6yearmed) at Braintalk. I am not one to share my thougths so freely but I can certainly sympathize and have some understanding of what you must be going through. I think you are such a strong and brave person.
My daughter, now 16 months old was born with neonatal seizures which are under control with Phenobarbital (all her tests were normal). Her neuro wants to start weaning her off in Sept. as that will be when she's been seizure free for 1 year. I am so terrified that the sz will come back and cause her to regress (although he doesn't think so, about the regression part, he can't guarentee that sz won't return). We did tried weaning her at 5 months and they did return.
Anyways, I don't have a blog so I'm signing in anonymously. I wish you the best. I'll let you know how the weaning goes. Best regards...Eva (evali3@yahoo.ca)
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