Take control of your epilepsy and seizures. Seizure management has never been easier.
TAKE CONTROL TODAYSo Kaitlyn had another 23 hr VEEG at St Louis Childrens Hospital. We saw an Epilepologist there. She has been diagnosed with Progressive Myoclonic Epilepsy. It's just devastating. This whole time I have been wishing for the day that we would find a balance with medications and seizures and we haven't gotten that because we can't. It won't happen. I wish that I could find peace with this all, but I can't. I'm just crushed. I want my little girl back, I want to be able to appreciate the simple things in life again and not be worrying about when the next seizure is going to happen or the latest temper tantrum.
I just want to yell "WHY HER?" at the top of my lungs and fall to the floor. I know that it could be worse, but this is worse for us. It's hard enough to deal with her having her mood swings and the seizures but to know that it will never get better and will most likely get worse.... I just don't know anymore.....
WHY?
dido |
rycharde |
Sobralia |
agrace New - Two neurologists, conflicting opinions, what to do?
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Wyn |
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kaitly... |
elly |
nik Could a "partial" be as small as forgetting a few words?
Created by nikat5/29/07 - 11:58 am|3 Comments |

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I just discovered your blog, I am so sorry to hear that. I think I can understand how you feel. My husband was diagnosed with pme in Aug. Since then they have continued to run a barrage of tests to find out why he has it and why suddenly at his age, 35. It has been an incredible ride of emotional ups and downs. Some days it is all you can do to get out of bed. But you do. Just hang in there. Now that they know what it is, most likely they can get a better control of her medication. It has made a world of difference with us. I have even read some where that people with pme can live to their 60's depending on it's cause and treatment. And God bless you for taking care of a 2yr old on Keppra!
Take care,
Mindy
Dear Emily,
I've sat reading your blog over and over, wishing that there were some way that I could help. All I know to do is tell you that you have my prayers, and to encourage you to not despair.
There is a certain courage that rises from within during such turns in life. You have displayed this from the start, and I've no doubt that you will continue to do all that you can for your darling child. You are a fabulous, loving and caring mother. Your child has you to care for her, and that in itself is one of her greatest blessings. Your love for her will get you through. You are her rock.
My personal beliefs take me to a mindset that tells me we are never to give up hope. Who knows what might be discovered tomorrow or next week? There may not be any answers now, but we can hold onto the hope that new ones will present themselves.
Pace,
Anna
"...Only God never changes." St. Theresa of Avila
Anna,
I just wanted to tell you that I appreciate all of your kind comments and uplifting words. I try to remind myself that I have to be her rock and her biggest advocate. Some days I just find myself wallowing in sorrow. I hate to be so upset by all of this because I know that this doesn't change her, or who she will be I just worry that it might change her, or her future and that terrifies me. To think that she might not be able to do everything that she will want to breaks my heart. I know that I can't protect her forever from everything.
Thanks again hun, it really means alot to know that you and everyone on here cares so much.
Emily
emily, i was in tears for kaitlyn, you and your family when i read your blog. i think i have a fair understandirg how you must feel, just by how i feel about going from controled to uncontroled t/cs. the only thing is this is a billion times worse cuz it is your precious angel kaitlyn. she is just a young child whom you love unconditionaly and want to protect against all things bad. i wish i could take away your pain my sweet freind, but i can not. but i can keep kaitlyn, you, christopher and nick in my prayers. maybe we can start a prayer chain for her, you have lots of freinds at e.com. emily you are not alone, i think of you daily. and i will give you my email address.
love,
sylvia
I am so sorry do here about your diagnosis. I am in this with you. Thats Carter diagnosis to. A good website is www.idea-league.org. It is for families and caregivers of Severe Myoclonic Epilepsy or also known as Dravet's Syndrome. Let me know if you need anything.
Tracy
tigger_9697@yahoo.com