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We didn't know
Mon, 03/12/2018 - 23:06Topic: Share Your Story
My four year old was diaganosed Friday with seizures after she stopped breathing on me and I did CPR on her on the side of the hughway. Followed by her doing it twice more in the ER where they had ro assist her wirh breathing. I know know this is common. What isn't common I hear is the way most of her seizures present or at least the way they were prior to Friday. For the pasr 5 month she had "episode" where she would immediately stop doing whatever it was tell us she was going to throw up and then end up spitting up about a tablespoon of saliva followed immediatlybwirh saying her head hurt and then immediatly wanting to be held and falling asleep wirhin minutes only to sleep for 20 min or 2 hours. All the Drs were saying she had migrains. Even in the ER where a nurse, ER Dr and a nerologist seen her do an episode that time withe stopping of breathing they all said it doesn't appear to be a seizure. Her eyes never stare off, she never jerks and she always remembered at least until Friday when she had the big ones. Then Friday night she had one like she had been having at home and we captuted it on the eeg and was told it was defiantly a seizute! Over the last 5 months she has had no less than 75 of these and we never knew! We just thought they were headaches! Have you ever heard of a seizure being like this? We are now on Keppra day 4 of it and she is a differnt person. I am heartbroken she is very quiet doesn't want to talk or play only sut as if she is in a daze. Will it get better? Does it take time to adjust to Keppra? Please help me!
Comments
That's a stressful load to
Submitted by Amy Jo on Tue, 2018-03-13 - 13:36
That's a stressful load to deal with as a parent. One family that posted to the old EFA web site used a pulseox at night to be alerted if their child stopped breathing.There is a learning curve with each child, don't beat yourself up over this. Focus on what's needed for the now and future. Don't get dragged down by guilt (past) or worry (future) as it does not address your child's needs. Don't assume most docs know what is and isn't a seizure, there's such a wide variety of seizure presentations that aren't obviously seizures that even epileptologists can be somewhat off (but they are usually in the ballpark, unlike many other docs).Keppra started working before my child got to a therapeutic level. Your doc may suggest supplementing with B6 while on keppra. My child took the suspension and it tasted awful (worse than anything else ever). Our child had a reaction that caused us to stop keppra but for those it works for, it's usually a wonderful drug.
Migraine headaches are
Submitted by birdman on Tue, 2018-03-13 - 16:13
Migraine headaches are sometimes referred to the "borderland epilepsy". Many of the medications used to treat migraines are also used to treat epileptic seizures. There are definitely several similarities. Seizures often do change as we grow. Children especially go through lots of changes in metabolism and seizure characteristics. Hopefully things will improve.You wrote that your daughter is a different person since starting Keppra. I sympathize since I know I would be such a better person without medication. Thirty years ago my doctor agreed we could try getting off medication. I went into status epilepticus (non-stop seizures) for a second time in my life. My mother says I was a totally different personality when I am off the pills, but this is not an option for me. New, non-drug treatments are available. Ketogenic diet helps some children. There are also electronic implants for seizures. These implants are only indicated for people with seizures which are uncontrolled from medication but one day that rule may change. There is hope that one day patients may be less influenced by the effect of pills.
There are many different
Submitted by just_joe on Tue, 2018-03-13 - 11:25
There are many different seizures and the things you posted are parts of several. If you have seen her in a state like she is day dreaming then that too could have been a seizure. Research absence and focal seizures.Her sleeping and headache can be a post ictal state...The postictal state is the altered state of consciousness after an epileptic seizure. It usually lasts between 5 and 30 minutes, but sometimes longer in the case of larger or more severe seizures, and is characterized by drowsiness, confusion, nausea, hypertension, headache or migraine, and other disorienting symptoms. It takes time for the brain to get back to normal after a seizure, Most ER doctors do not know about all the different types of seizures. If they said they are definitely seizures did they prescribe medications? If not then do see a neurologist and get some prescribed. The neurologists can tell you more about her not breathing and rescue meds that might or will help her. Please try and get a neurologist that specializes in epilepsy. They are epileptologists.