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Pediatric Myoclonic Absence Epilepsy Advice Please

Sun, 04/12/2015 - 20:52

Hi everyone,

We are looking for advice/experiences with myoclonic absence epilepsy especially in children under 5.  Our daughter who is a twin and almost four years old experienced her first seizure on 1/4/15.  This seizure was a classic febrile seizure (new to us) where her temperature spiked to 104 when it happened.  The ER (children's hospital of Oakland or CHO) was quick to reassure us that it was nothing and we were dismissed.

Fast forward three weeks to 1/29/15 and she experienced a seizure at preschool with no associated fever.  I picked her up and 2.5 hours later she experienced another seizure - both approximately 45-60 seconds.  Back to ER (CHO) that evening, given a loading dose of Keppra and dismissed.  Approximately 24 hours after the loading dose was given she started seizing again and back to CHO.  This started our journey and a 21 day stay at CHO to figure out the type of seizure and how to control them.  

In week three of our hospital stay we were introduced to the new on call neurologist who finally stopped the madness and asked deeper questions to get a better understanding of the type of seizure.  Before he arrived we had gone through 3 EEGs, Spinal Tap, MRI, CT Scan, Countless medications and blood draws.  He finally determined that she has Myoclonic Absence Epilepsy.  

We were almost three weeks with no seizures (miracle) and then she got a cold virus (she is three and in preschool) and started seizing again.  She was put on Lorazepam along with her normal meds to keep her from seizing while fighting this common cold.  She was on that for a little over a week.  We saw the neurologist and he adjusted her medication by adding in Phenobarbital 32.4mg twice a day.  This is along with her regular meds of Clobazam, Ethosuximide and Phenytoin.  The goal is to work her off Phenytoin - the Phenobarbital will replace that but it apparently takes some time for phenobarbital to get to a therapeutic level.  

My concern is that all of these medications have taken my daughter away - she is a shell of who she use to be.  Of course I don't want her to seize, but I feel that she is walking through the day in a very medicated state.  Any success or experience with change in diet with this type of seizure?  Any trials with medical marijuana? Anything that we/they have not looked into?

We are now seeking out a second opinion (different hospital research group) - I just think its good to seek out as much advice as possible.  

Thank you for reading my rambling message and appreciate all advice or experiences.

Best,

Holly

Comments

Welcome HollyIf you go for a

Submitted by just_joe on Tue, 2015-04-14 - 10:39
Welcome HollyIf you go for a second opinion and they give you the same diagnosis whould you think the same thing. While I know it is hard for the parent I also know it is hard on the kid. I had just become a teen when my diagnosis was made which was prior to the week long testing. I do know it is hard on the person taking the medications and I went thru a lot of things. You need  to understand that when a person is put on a medicationthere are side effects which is the body having to get used to the medication. That period of time is generally 2-4 weeks depending on the medication. With the addition of another medication that period starts again. Once a person is on the medication and it is controlling her seizures then they have dosages set at theraputic levels. If she gets sick those levels could be high enough to control seizures but not high enough to maintain that level is she gets sick. If she did this because of a cold then any illness can cause the same thing. I know it has happened to me when I get sick. When  person gets sick the body is fighting the illness and that takes energy. With colds we drink more water therefore we wash out medications that are to help us.  I hope your daughter gets streightened out and she gets seizure free... Joe

Holly,My daughter at aged 6

Submitted by Ella's_mom on Mon, 2015-04-20 - 00:51
Holly,My daughter at aged 6 started having absence myoclonic epilepsy following a fever in June 2014. Previously, she was a very healthy, brightchild. There is no history on either side of our family of anything genetic(that we are aware of) that would have prepared us for this journey. She was worked up for autoimmune disease and has undergoneextensive immune modulating therapies, which unfortunately have not been helpful.Fast forward 10 months to today. She currently takes Zonogran, Onfi, Depakote, andZarotin and averages about 15 seizures a day. She has been to Duke MedicalCenter three different times and they honestly didn’t know what to do with her!We returned last week from the Mayo Clinic in Rochester, MN andwere seen by a pediatric epilepsy specialist and neuroimmunologist.  They both recommended the ketogenic diet. Wewere told that for children with refractory epilepsy which is generalized thatit might be helpful. Like you stated, the drugs our is daughter are on, turn her intosuch a shadow of who we know her to be and on her “good days” she returns to usand on her bad days she’s a zombie-tired and listless. The side effects rob herof her drive, personality, creativity and concentration.  We live in Florida and the low THC Marijuanawill be available here soon (it was passed last year, the state is working outlogistics). But we are putting our hopes and prayers in the keto diet first. Itwill be challenging, but if it means reducing even one medication and she hasseizure control I will take it! One of the things we learned at Mayo that I had never heardbefore, is that with Myoclonic absence seizures are at greater risk for developingthe tonic-clonic seizures which I was unaware. I pray that won’t be our case(or yours) but it made more desperate for us to do something radical. Please be in touch. Kim 

Holly-Our daughter has been

Submitted by Anonymous on Wed, 2015-06-03 - 23:22
Holly-Our daughter has been on the ketogenic diet for almost 30 days and so far all I can say is that it is a miracle! Ella went from having 26 seizures in 5 hours to maybe one a day. She's had several days with no seizures at all. We are currently weaning one of her meds and hopeful it will be the first of several. But even better is that she coming back to us! We were discourged by several doctors from pursuing the diet but I wish so badly we would have started here. A great website for information is the Charlie Foundation. Please be in touch.Kim

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