Hi everyone.
My name is julie.
I have an 11 year old daughter. She had her first seizure when she was 5. It was what they call a grand mal seizure. Her hand and legs were drawn and her eyes were rolled back in her head. I had never seen a seizure and this being my first and only child,I panicked,I thought my baby was dying!!!
When we got her to the ER, she had a small fever (100.5) so they said it probally was a febrile seizure and that she would probally never have another one. They did a cat scan and found nothing.
Well a month later she was standing by the car and slowly started to go the the ground and was kind of moaning her right leg was barelyI mean barely trimbling. we got her in the house it only lasted a matter of seconds. we called theER and they said since she had had one before it was to our discretion if we wanted to bring her in or not.
Well she was having tingling in her legs so we took her on to the ER. By the time she was seen, she was fine bouncing off the walls.we went home. The next morning she was in the chair watching TV. She was covered up andI noticed she started kicking the covers of soI went to remove them. She hollored help me andI saw her right side begin to trimbleI picked her up to lay her in the floor and beforeI could get her in the floor it had stopped.
Once again just a matter of seconds.We took her to theER and when she got into an examing room she was tired and cranky. While we were there talking to theDR I heard her say in the saddest voice MAMA Help andI heard the bed rattleI looked around and she was trembling. TheDr gave her a shot of valum and at this point admited her to the hospital. They started her on Tegratol and the next day ordered an MRI. They then referred us to a child neurologist.
The MRI, cat scan andEEG showed nothing. We were thankful that it showed nothing but we wanted to know why. why was this happening. Every movement she made scared me to death.I was scared to sleep afraidI was going to miss something.I was afraid to let her go anywhere. Everytime she made a lot of movement or was lying in the floor or on the groundI was like areyou OK?This is how bad it was, one time she was asleep andI heard a lot of movement andI looked at her and saw her hand and leg moving rapidly andI was going are you OK, are you OK?
Her response was mom you are getting on my nerves allI was doing was scratching my butt. You know it is bad when a 5 year old tells you that you are getting on their nerves!! Well she stayed on Tegratol about six months she wasn’t having seizures but was having awful mood swings. One minute she was so hateful and angry and the next minute she would be crying saying you don’t like me and when we would say honey we love you she would sayI know you love me but you don’t like me.it was awful and heartbreaking.
They switched her meds to Trileptal. She stayed on it for about 2 years and they decided to take her off. They weined her down. She was taking 1 and a half in the morning and 1 and a half at night. She got down to a half a dose and she was at school andI got that terrifying call. My heart sank!!!! My biggest fear, she had one andI wasn’t there!!I felt horrible!I felt helpless!!I felt likeI let her down!!! They put her back on her medicine and once again she was fine. It has been 3 almost 4 years and she had not had a seizure.
We thought everything was ok, worse come to worse she would just be on meds.I could sleep,I didn’t worry about things as much, a seizure honestly hardly ever crossed my mind. Then 2 days ago our whole world fell apart.
It was 4 in the morning and she let out a scream and said mom help,I ran to her and at first thought she was about to roll off the bed, but whenI put my arms under her to lift her upI realized what was going on. Her eyes was opened but you could tell they were terrified!!! Her body was stiff but barely trembling.I kept talking to her and something told me to look at the clock.I would look at her then at the clock, look at her then the clock thenI noticed her lips were beginning to turn blue and she seemed to be gasping for air andI remember thinking oh God no please no!!!I rolled her over and she began to slobber and relax. It had lasted about a minute.I picked her up to set her in front of the toilet becauseI remembered before she would vomit afterward. She was lifeless and still almost gasping for air. She was awake but not responding.
We got her to theEER in about 10 minutes. She still had not responded and when they layed her on the bed finally she started crying.I remember thinking thank God. She was ill and trying to get out of the bed and didn’t really know where she was. ER knew that this was normal but then we realized she couldn’t speak. It was like her tongue was too thick for her mouth. The nurse insisted the she had bitten her tongue and it was probally swollen.I told her thatI was with her the whole time and her mouth was open,I could see her tongue and there was no way she had bitten her tongue. she got a tonue depresser and forced her mouth open because she was fighting tooth and nail and sure enough there was no sign that she had bitten her tongue. After a few minutes she started vomiting and kept vomiting. Everytime we got her back in the bed, she had to go again.
They did a cat scan and course once again found nothing. they called her neurologist and got the on call service and they said to up her meds to 2 in the morning and 2 at night. And to call next week to make an appointment.of course I’m thinking why is this happening she is on meds and has never had one while being on meds. Our whole world came crashing down again.
I’m thinking now we are back to square one. What now? Ican’t leave her!I can’t sleep. What if she had not been able to scream out what would have happened? Where didI go wrong? What didI do wrong? What didI do to fail her? I feel so helpless because she says mom help!! andI can’t!! There is nothingI can do to help, there is nothingI can do to make her better, there is nothingI can do to make it stop!!I would trade places with her in a heartbeat ifI could!!
This one was worse than the others andI am terrified for her. Iam so scared and so sick to my stomache.I try not to show too much fear in front of her.I go to the bathroom to cry a lot.
I know sometimes she knows I’m crying butI can’t help it. Now she asks mom why didI have one andI feel so helplees bacauseI don’t have the answer.
Does this ever get any easier??
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