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| Mothers of Children with BHS |
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My almost two year old was first diagnosed by our primary doctor with having epilepsy, and then by the neurologist with having breath holding spells. I'm not sure what to do at this point. I'm here to read other's stories and see if they sound similar.
I POSTED THIS ON AN EPILEPSY MOM'S BOARD A COUPLE OF WEEKS AGO:
There isn't much to our story yet...though soon I can tell there will be another chapter added. Right now we are at the scared and stunned part where we got handed a diagnosis of epilepsy for my 23 month old daughter.
Her first seizure was two months ago. Life was normal before that day. Everything seemed as carefree was it could ever be. My daughter Audrey was always healthy. Sure, she's a wild and an often clutzy toddler, but she was healthy. Her older sister was the one with all of the medical issues (her sister has Turner Syndrome), but I never had to worry about Audrey....until that day.
I remember it all very well. We were at my parents house, and I could hear Audrey's little feet pitter-pattering on the hard-wood floor. Suddenly I heard a loud "thump" immediately followed by a horrible, scary cry. I jumpped up to get her, but my mom beat me to it. She had quickly scouped her up on her arms, and Audrey seemed to be "winding up" to let out another cry. She let out a second horrible cry, which is when I took her from my mom's arms.
As I held her she stopped crying and I looked at her. Her eyes rolled back into her head and her arms were shaking. I yelled for my mom and she called her name several times. After probably only about 15-20 seconds she came to. I was so relieved to see her eyes looking at me again, but I was still freaking out. I had my mom call the doctor as I watched my husband hold my precious baby. She was so cold and pale and clammy. So tired. So out of it still. Weak. I was about ready to take her to the hospital, but my mom started talking about "breath-holding" spells and about a girl at the day care who would do that. It was the best-sounding explination I heard, and I wanted to believe it so bad, but there was somethign about it that just didn't make sense to me. My instinct told me that there was somethign more going on, but it got muffled by my desire for everythign to be ok, my mom's explination of the events, and the fact that shortly after it happened, Audrey was acting like her normal self again. I tried to forget about it, and go about life as usual.
It was nearly a month later when it happened again. Audrey and her sister were running around in the livingroom. Suddenly Audrey stopped, and Aleah bumped into her. She fell and immediately started to cry. I picked her up, and when I did her eyes rolled back in her head again, and her arms were flailing around. I called her name over 10 times before she was looking at my face again. Afterwards, all she wanted to to was lay down. She laid there, still and pale and clammy again, for about 20 minutes as I watched her closely. I called the doctor and told everythign to the nurse. I didn't get to talk to the doctor, but apparently the nurse did. She came back and told me that he said that sometimes kids hold their breath and pass out and to not worry but to keep an eye on her. I didn't accept this advice very well. That night I posted the events on a website asking for medical advice. That is when my fears were confirmed...three people told me that it sounded like seizures. I agreed.
I immediately made an appointment with her doctor. I prepared myself for a "fight". I was not going to let anyone tell me that she had breath-holding spells again. I KNEW that wasn't it. When the doctor came into that room, I was ready to stand up for my child. I soon found out that it wasn't going to be a fight at all. As soon as I began to tell him about the first incident, he looked at me kind of shocked and said, "that's not breath-holding, that's a seizure."
....SINCE THAT POST:
We went to an appointment with the pediatric neurologist, and she said it was breath holding spells. She did not expain it. When I told her that it didnt seem like she was holding her breath, all she said was that children don't have to hold their breath to have a breath holding spell. She didn't really explain it at all...just that. And then she gave us an order for an EKG, and that was that. Nothing else. So my research online has been my only source of information. I"m hoping someone will read Audrey's story and say "yes, that's just what my child had." and help us understand if it is a form of epilepsy, breath holding, or what.
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| Posted by Rachel on 09/21/2008 10:33 PM
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