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Im new, here is my story...
Mon, 10/02/2006 - 00:15Topic: Parents & Caregivers
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
Do you have Diastat? It is
Submitted by ekoorb on Tue, 2006-10-03 - 22:48
Do you have Diastat? It is the suppository that is given only if the seizure lasts over 5 minutes. Really it is for emergency use and may not apply to your situation but you may want to call your doc.
As to the meds, it takes time. Make sure you keep your doc informed in case he feels a different med may be better based on your child's reaction. Do you go to a E specialist versus a general pediatric neurologist?
I understand the tears. I have found myself driving and tears just come. I am not sure you ever "get over it" but things gets better with more information and control. I think it is good you deal with the emotions. Better to let it out and work this through.
Have a nice trip and congrats on her first stand!
Re: Im new, here is my story...
Submitted by crazyglued on Wed, 2006-10-04 - 00:03
Hi, My son is 20 months and had something similar happen at 7 months....his seizure lasted 45 mins ( that I can account for) anyway a long story short I am from Canada and he is on Clobazam however he isn't seizure free BUT it has taken awhile to get to where we are... where in Canada are you from? I live in Vancouver... I know it is scary... you aren't alone....
take care
Jacqueline
Re: Im new, here is my story...
Submitted by momofaperfectbaby on Tue, 2006-10-03 - 22:38
thanks everyone. I am trying to "get over it". My husband seems to be handling this a bit better. I cry all the time. She is medicated. It is called Clobazam. I live in Canada, so I am not sure what this drug is in the US. Anyway, it is apparently the mildest, with the least side-effects. But today I cried because she seems medicated, and different. More moody and sleepy. A little vague. I hope it goes away. I feel like I lost a bit of my beautiful baby...where is she???? She seems to stare off into space a bit too these last few days, and like she is seeing things I don't...maybe these are more seizures, I don't even know. We are going on a breif vacation tomorrow, and I hope everything goes okay. I have my watch, a cell phone, and her medication....what else would I need on a vacation??? Oh ya, on a good note, she pulled herslef to a stand today for the first time, and seemed interested in walking. For twelve months I know that is not late to walk, but my other kids were running. Perhaps this could have been from the seizures too? Thanks for listeing everyone. My name is Tania.