Farrah - posted on 07/10/2009 ( 29 moms have responded )
You may remember me --I have a six year old dd, Hollie that was finally diagnosed with some seizure activity in April...after fighting for 6 years with tons of doctors. She was put on 40 mg of Lamictal a day and things seem to be improving. She has/had absence/staring seizures and some stiffening while they were occuring.
Well...my life fell apart on June 14th. My 8 year old dd, Emily had a grand mal. She has never ever shown signs of any seizure disorder. She WAS diagnosed with Selective Mutism at the age of three, because she will not speak in social situations, at school, with some (most) of our family, and has been on an IEP speech/language program since she started school....I just accepted the SM diagnoses, because like I said, she had never shown any seizure behavior before that day. After all this has happened her speech path and I are seriously questioning that diagnosis....
Here is what happened::
It was around 8:30 pm Sunday night and Hollie and Emily were laying on the couch watching tv and I decided to go take a shower. Emily hadn't shown any signs of weirdness.....nothing...she was fine the entire day. Well, I was in the shower for about 10 minutes came out and Hollie said "Mommy,Emily is acting weird". I look over and there is Emily--convulsing face down on the floor.
I ran over to her and turned her over and saw nothing but blood---coming out her mouth, all over her neck and my first thought was she was choking. I took her to the middle of the floor (mind you she was still convulsing) and checked for a pulse and breathing...I couldn't find any, so I started beating on the floor for my husband. (he was in the basement). I heard him run up and I yelled for him to call 911. He dialed it and handed the phone to me and he started working on her. She WAS breathing (I must have been freaked out too much) but they were shallow breaths. Her eyes were rolling into the back of her head and she was incoherent. The first responder got here in less than two minutes....it seemed like hours... They had 6 EMTs here and they got her vital signs and got her on a back board and into the ambulance. We discovered she was not choking on anything - when she fell off the couch, she split open her chin and her mouth was bleeding because her jaw was clenched so tight that she was actually pushing her teeth up into her gums. When I first got to her and thought she was choking, I had tried to pull her mouth open, but it wouldn't budge...it was TIGHT.
Anywho, all the way to the hospital, she was incoherent, combative and had no clue where she was or who was with her. We got into the ER and they got her on the bed and the IDIOT (doctor from not around here) Checked her out---asked me what happened..I told him that she had a seizure...he goes.."aha...I see". Then he proceeded to tell the nurses to get the suture kit so he could sew her chin up. Emily started coming around and was very confused. I kept asking the IDIOT what about the seizure...he wasn't addressing that at all. He finally decided to go ahead and draw some blood to make sure her sugar wasn't low or that she didn't have an infection....he sewed her up got the results back (they were fine) and told us that she was just scared when she cut herself and kids do that. I was like WTF???? I said, SHE HAD A SEIZURE!!! He said, "yeah..well it could have been a seizure, it could have been convulsions, it could have been a number of things...but she is ok now".He sent us home and my hubby and I sat there ALL night watching her while she slept. I still have to check on her every few minutes because I am so freaked out. I make her sleep right by me too.
Anyway, I told Derek that I was taking her to Slavens (our regular doc) on Monday--because a healthy, normal little girl doesn't just have a seizure for no reason. We took her the next morning and let's just say Andy/Slavens were appalled that the IDIOT didn't keep her for observation or do a CT scan. We were sent to the hospital right away to get a CT scan. Which came back normal. What we experenced that weekend is something I hope we never have to go through again and I wouldn't wish it on ANYONE. I just can't believe it was Emily that it happened to...It would make more sense if it had been Hollie, ya know....not that I want to go through that EVER again with any of them. Her poor mouth was really bruised too, and she had three very wiggly teeth. Two has fallen out so far.
Andy ordered an MRI three weeks ago and I was just told yesterday that there are definite abnormalities with her EEG--constant seizures- and we were set up with the Neurologist on July 28th. Our family doctor also started her on 25 mg of Lamictal per day until we see what the neuro wants to do.
I just can't believe that I now have 2 children with seizure disorders.
I would like to talk to others who have any support/knowledge with any of this and I would also like to know if anyone else has had a child around the same age as Emily who had a seizure out of the blue like that.
Thanks for any and all feedback!!