Seizures or not?
 

Hi everyone, I'm new here, and new to seizures.

My daughter is 3 yrs old when she was born she had some problems and ended up in the Nicu for a while. She was on oxygen for a month after she came home and the Ped took her off the oxygen and she seemed to thrive well. She was a classic by the book child, walking, crawling, sitting up, so forth.

More then 6 months ago she started acting oddly. I quit my job and came home to take care of both my girls full time. I thought she was throwing tantrums and acting out at first like kids do. But she would be okay one minute then anything would trigger this sudden withdrawal, blank stare, and lack of communication. Then she'd lose it and start hitting, screaming, throwing things, biting herself, myself, pulling her hair, scratching her face. She becomes so strong that I have a hard time controlling her. She slammed my arm into the wall and dislocated my elbow. Then she sprained my wrist and hurt her sister. I started putting her in a safe place on a mat on the floor to keep her from hurting herself or anyone else. Usually she'd go to sleep afterwards, sweaty, panting, ect. After she had a tonsillectomy/adenoid removal she got even worse. These last for a few minutes and can repeat over and over. If I take her anywhere even shopping she starts twitching and shaking asking to go home.

She also does not sleep for more then 3-4 hours at a time before waking up. She hardly naps and goes on very little sleep which for the first year and half after she came home she slept through the night. So this is unusual to me too.

I was and am concerned so I took her to the ped and told her something was wrong, twice. Finally she said she thought she needed to see a neurologist then she put her on clonazepam as needed. She told me she thought that she may be having seizures.

I told my dad that I was really concerned that something was wrong and I live 6 -8 hours from Phoenix so seeing a neuro there is expensive. I was trying to located a ped neuro near by when my dad decided to call his friend her son is training to be a neuro. He said it sounded like she was having seizures. I needed a referral to Primary Children's for treatment so I took her to a PA at my doc's office and he examined her. We told him everything that was going on and he said that she needed to be seen by a neuro to see if it was seizures, migraines, or something else all together.

I am lost, I having stayed up many nights just researching looking for answers. This girl is so sweet and loving and will bend over backwards to help someone and she absolutely loves to sing and dance. Every day I am wondering if she will be ok or if she will have an episode. She can go for a period of time 4 days or 5 then have one. She is in preschool right now and recently everyday when I bring her home she is in the back seat grabbing her ears, screaming, biting herself, crying. She tells me its black inside her head, she hears a bzzzing noise, and that something in her head is hurting her, like hitting her and she doesn't remember the attack just after and before. She tells me she is sorry that she loves me and she doesn't mean to do this.

Like I said I thought it she was acting out but she comes from a loving family and is well taken care of and has never been abused or hurt by anyone. I love her so much and want her to be ok. I did get an appt on the 16th of this month to take her to the ped neuro closer to our home.

Has anyone had this happen or know of this happening or can relate to what this may be? I'm so lost. Sorry this post is so long.

Appletini

Sorry about the double post. But I wanted to add that I have taken her for a blood test, glucose, metabolic, ..everything came back normal in her blood tests.

Also when she starts these attacks she just goes into a blank stare and her eyes are open the whole time she is having the attack.

Thanks

A Neurologist Is A Great Idea
 

My Daughter Done those EXACT things. Sweet one minute then total melt down the next. She would space out kind of like Daydreaming. Crying and Screaming spells that can last for hours. Especially if i put her in the car.Then eventually it was the really convulsing full out seizure. During one episode she fell and broke her elbow. We went back and forth to her Ped. but they hadnt seen her during these episodes so the just kinda played it down until I would bring her to the office during each episode. Finally we got in with a Great Neurologist. And It was seizures some not so severe. My Daughter was born with CP. So the seizures go along with it. If I were you I would absolutely try to get her in with a Neurologist just to be on the safe side. I hope this Helps. Keep us informed..!!!

Good Luck....

Growing up with Epilepsy
 

Hello, I am 49 and I have had seizures since the age of 4. As you can imagine there is a lot I don't remember from childhood and a lot I do remember. There is one thing that does not change and that is the feeling of a seizure. Do not ever think that your child can't comprehend anything that is going on around her/him just because they are having a seizure. Screaming and getting excited does not help, it makes it worse. In the first stages of a seizure you can still be aware of what is going on and not able to respond so getting all excited just makes matters worse for a child. As an adult I just want to tell them to shut up, if I don't go into a convulsion I'll be ok in a little while and if I do it will be just a little longer so chill out; unfortunately, it does not work that way because I am not able to respond even though I am aware of everything going on around me. There are so many different types of seizures and I have several different types myself. Seizures take a lot of you physically, and after one seizure it takes a few days to recover. I sometimes feel nausea, always a headache, every muscle hurts, and your mouth really hurts. I have tingling feelings in my arms before seizures and bad headaches. My mama said I used to walk around in circles and I believe her, to this day before I have a seizure I get up and walk around and don't even know where I am going or why. I hope this is useful to someone, give the Seizure patients that you know a break, we hear and see more than you think. Be patient, and let your kid be a kid. My parents were great they did not let that hold me back from trying new things, of course they were their and safety percautions were always taken but let them be kids.