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5andstrong

New Seizures?

My daughter had her first seizure at the age of 4. She was sound asleep in her bedroom and I luckily had a baby monitor in the bedroom next to hers for my son. I heard a noise and found her staring to one side , teeth clenched and vomiting. It was the scariest day of my life. We called an ambulance and they had to intubate on the way to the hospital. This happened a few times. This pattern continued through every year for the next three years. Her medication seemed to control it but she would have a 'break through' seizure every year. At the age of 7, she started experiencing 'facial twitching and jerking along with severe headaches' She would feel the onset of tingling on the right side of her face followed by jerking of the mouth and eye. This would happen up to 15 times a day. We finally had a video EED done and she was diagnosed with a new form took her to the ER where she was diagnosed with a NEW pattern and type of seizure... new medication. Keppra.. It took a long time ti get her on the right amount but its been working. Her headaches are daily.. she had now learned to just live with them. Sometimes they are so severe she cries and just lays down... but when they are dull an ongoing she takes Motrin and pushes through. I finally convinced her doctor that the headaches have been disrupting her normal lifestyle and he added Vimpat. She has been doing great. No more twitching at all! Headcaches stopped for a year. HOWEVER, now at age 10, she is back with the headaches AND now she explained that she randomly 'gets confused' she can be listening to a friend or a teacher explain something and she just ' loses focus' (quoting her) She explains that she can see there mouth move but she cant hear or understand anything... and then she regains focus but is totally confused about what was said. I've contacted her neurologist who mentioned increasing her Vimpat yet again.. and suggested waiting to see if it occurs again. he explained that if this does occur, he recommends another video EEG to see if it is a new pattern.. possibly 'absence seizures'? Thanks in advance for listening to my story. Here is my question: My husband and I are reluctant to increase her medication again without knowing for certain that this is a new pattern of seizure... what if its the medication? why would we increase her medication without knowing for certain? She takes Keppra and Vimpat and a Vit B6 plus countless amounts of Motrin. Her headaches have been ongoing for over 6 months!! Daily! Every other day she 'confused' for seconds at a time. Here I thought she is reaching adolescence and she might outgrow this??!! Im scared for her, Im confused for her... I would appreciate any thoughts an/or guidance on how to handle this.

Comments

Re: New Seizures?

Hi...I am new to the boards, in fact this is my first time posting. To start I don't have an answer for you but your post caught my attention as I am in a similar situation. My daughter too, at 4 started with strange behavior at night however hers is not extreme but she had what I was calling nightmares at the time. She would wake up screeching sitting up in her bed just staring. One time I ran upstairs and she was wrapped up in her curtains across the room screaming and crying. There were other similar episodes that followed.

Fast forward to Thanksgiving this year at age 5 she started have "staring spells". Sometimes her eyes would roll up and other times she would "check out" anywhere from 3 - 5 seconds. If you called her name she could not hear you. On November 15th we had an EEG performed and she was diagnosed with Absence Seizure Epilepsy. She started out taking Zarontin but due to the terrible side effects they changed her medication to Lamictal. This past month the characteristics of her seizures have changed some. I have noticed on two occasions she had back-to-back seizures. Also, instead of stopping and staring like before, she now is walking while the seizure is occurring and almost running into things. Lastly, she seems to be doing a form of twitching like you mentioned accept my daughter is sticking her finger in her ear and itching the back of her head or neck frequently. I called the neurologist to tell them what I was seeing and they want to perform a 24-hr video surveillance EEG as well. I'm not sure what to expect from this and was hoping you could share your experience? Also, what pattern did they find different with your daughter on the video EEG?

Lastly, I am seeing the same neurologist for my daughter who is 8 who does not have epilepsy but experiences terrible headaches. There are times where she is curled up in the fetal position screaming. We too, dose her with Motrin or Tylenol when they occur because it usually does the trick. We also dose her before she goes to birthday parties or loud functions as these type of environments usually trigger a headache. However, our neurologist informed us that you can actually make the headaches worse by dosing Motrin too much! He said he has seen parents stop giving the Tylenol/Motrin and the headaches disappear. Just food for thought...With my daughter, he wants to put her on a preventative migraine medicine to control them. But I'm not convinced she needs that yet. Meanwhile, we are still controlling them with Advil. I hope your daughter finds and answer soon. Thanks for your post!

Tlo