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Im new, here is my story...

Mon, 10/02/2006 - 00:15
I have a beautiful baby girl. So calm, and sweet. Our last child of three. She turned 1 a couple of weeks ago. On Friday, I looked over at her in her hi-chair, and she was gray, with her eyes rolled back. I ripped her out of her hi-chair, with my 8 yr old daughter screaming. She was turning blue, and so cold. My husband called 911...I thought she was choking so I tired a little bit of Hiemlich manouver. I saw she was not breathing, and so I tried to give her artificial respirations, but her mouth was clenched shut. Finally she went limp, and I screamed, because as an RN, I thought she had passed away. She finally took a breath, and we were rushed to the hospital by ambulance. I spent the day doing tests, and bloodwork, CT scans, etc, and then observation on the pediatric ward. She was sleepy, but then normal again. We went home. Today she had another one. She was crawling, then slumped down, and my husband screamed for me. (We can't get over the terror of seeing your baby not breathing). We timed it, like they told us to, and put her gnetly on the floor, where she stared off to the side..40 seconds, then a slight tonic-clonic to total 1 min 30. (A lifetime). We were told today she has epilepsy, and sent home, terrifed of putting her to bed, and terrifed of every move she makes. We are terrified. And nothing anyone can say will make me feel better. But I am trying.

Comments

Re: Im new, here is my story...

Submitted by jmccand on Mon, 2006-10-02 - 06:53
Everytime I see a new parent going through this it brings me to tears. My daughter is 8 and was just diagnosed in July. She had similar episodes when she was a toddler, but she would not stop breathing. They were always passed off as something else. It was not until this past July when it was caught on video at a birthday party that she was given epilepsy as a diagnosis. It was and still is very traumatic to us. I can only imagine going through this with a baby. Although, now that you are aware, she can get the treatment she needs. My daughter has had difficulty in school, and socially seems a step behind the other kids her age. She is a little like Pooh Bear. Her recent VEEG showed she is constatly having absence seizures, so now we know why. These boards have helped me tremendously. The more you know, the easier it is to deal with. However, it still is not easy. I have gone through all of the phases, or crying the entire day, to believing it will just go away. It is not reallly happening, to angry she has to go through this. Now, I am just trying to learn as much as I can to help her since it is up to me to make medical decisions for her that will affect her whole life. This is a great place to vent or ask questions. I hope it helps you as much as it helps me through this frustrating process. Lori

Re: Im new, here is my story...

Submitted by angel_lts on Mon, 2006-10-02 - 07:59
Hopefully you will get answers from the blood work. Sometimes there can be a deficiency of some kind. Check out this site Infantile Spasms http://www.epilepsy.com/stories/ps_1064252409.html Try to hang in there. For it has to been hard as hell to see such a site with your little baby!! take care lisa http://health.groups.yahoo.com/group/epilepsyapproach/

I am sorry for your

Submitted by ekoorb on Mon, 2006-10-02 - 08:05
I am sorry for your frightening experience. My 5 year old daughter had her first seizure that we really witnessed in February. It lasted around 7 minutes where she sat up like she would throw up and then stared off where we could not seem to bring her back. It was horrifying. We also called 911. She has been diagnosed with Benign Occipital Childhood Epilepsy. I know right now you probably feeling numb and frightened and sad. When this first happened, I felt emotionally like a zombie for the first month while at the same time going into super mommy mode trying to find the right docs etc. It is so important that you find the right doctor. We go to an E specialist and he changed our life. First we saw a pediatric neurologist and he really was horrible. He did not take time to answer questions and he was rude. Our second doctor, during our first meeting sat with us for an hour and a half and answered questions. I cried during the meeting out of happiness that we found someone so helpful. If you can find the right doctor, you will start to get your feet back on the ground. I am not suggesting it will make you feel better right away or change what is to come but it will start the process of grounding you. Has your doc decided to medicate her? After a few months of finding the right doc and the right med, things felt a little better but what is also really important is taking care of you. I found that while going into to super mommy mode, I did not really deal enough with my trauma of seeing my daughter that way. My emotions, in response to everything else in my life, became really raw. You have to take this day by day. If you ever want to chat in the chat room, let me know.

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