3 seizures within a few hours....Sooo Scary

1nation

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My daughter was diagnosed on March 21st with Epilepsy. We go for our first MRI this friday and her eeg is next Thursday. She has had 7 grand mal seizures. All but one was during the day. The other was 3:45am. Friday she had 3, which were grand mals. The first one was around 2. She went with her sunday school class to a place in town where kids jump on indoor blow up houses. When I got to her she was awake and alert. Usually she falls into a deep sleep after her seizures. She went to sleep on the way home and when we got home she was asleep on the couch and had another one that lasted about a minute and a half. Went back to sleep and woke up 20 minutes later with uncontrollable crying and frustration. She then went back to sleep and 15 min later had her 3rd seizure. We then took her to the ER as she has never had multiple seizures in a day. On the way she just laid in her daddy's lap in a dazed stare and would not respond or look at him. It scared me sooooo bad. We got her to the ER and she remained in that same state for about 15 more min and then started coming to and throwing up. Her neuro just upped her keppra(generic) 100mg to 2.5 tsp 2x a day. She was taking 100mg 1.5 2x a day. This will be the 3rd time we have upped her dose. She is 4 and weighs 37pds. I'm so ready to talk to her Dr.....we don't see him until the 31st. I have had her on a better sleep schedule and have done her medicine on time. She was seizure free this past time for 28 days. She was having them 1-2 weeks. I really thought I had found her triggers and she was going to have control until this happened. The 3 in a day really scared me. I wander how much more her dose can be increased or if this medicine is even really helping. She also has myoclonic jerks some nights and are these normal or could it be seizure activity? I'm scared she's not resting good and it's causing her to still be sleep deprived.
 
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oh i feel so bad for the little thing i do that staring for hrs sometimes it scares my wife an mom.keppra can be a scary but effective drug for some people im on it i hate it with a passion im also 29 i would talk to her dr. about maybe something else cause somethings got to give at that age.
 

Nakamova

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Hi 1nation, welcome to CWE!

I am so very sorry that you are dealing with this now. It IS scary, especially at first when you are still getting a handle on things. The MRI and EEG should help the docs figure out where in her brain the seizures are originating, and perhaps indicate a different direction for her treatment to take. Good for you for trying to figure out her triggers -- that's an excellent approach. It can take some time and attention, especially with a growing little girl, so don't give up. Sometimes there can be a combination of triggers playing a role.

Given that she has had the tonic-clonics (grand mal seizures), it seems likely that the nocturnal myoclonic jerks are also epilepsy-related. Sefinitely mention them to her neurologist. You might want to ask about having sleep study done -- sometimes their can be things like apnea or nighttime seizure activity that can make the quality of sleep problematic, and leave someone vulnerable to more seizures during the day as a result.

I hope you get some answers soon.

Best,
Nakamova
 

1nation

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Thanks Nakamova, I hope to have some answers when we see her neuro next week. I'm also going to ask him about the sleep study.
 
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Hi there! I am so sorry! It is very scary. I know from my family how scary it is for them when I have a seizure. I will pray that she gets the help and meds she needs. God bless you all.
 

donnajane

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Welcome! This is such a great place and I know I get so much support while my sons Nureo, Paed and other specialist try to work out whats going on with him. He's 16 months old. We are also waiting for an MRI, July 13th is our date. We have had 5 EEG's. My sons seizures alter a bit and often he has trouble when he "comes" out of them. For awhile he was having almost 120-1500 mini events a day thankfully no more. But now his events to me are more scary as i don't know when they are going to happen and can go on forawhile. My son is not on medication as his Nureo wants to see what his events do and where they progress to or if they go away.
Its horrible seeing your child in this state but I try so hard not to let him know I am worried just give him lots of hugs etc. I have found if he's having a longer event sometimes playing music to him helps him. have you tried this?
Take Care.
Donnajane
 

eissmo

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dietary therapy

please look into dietary therapy. start at Johns Hopkins.
 
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