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Caring for a nonspeaking autistic, just started keppra HELP!

Tue, 05/19/2015 - 02:26

I am the caregiver of a 28 Non-Speaking Autistic female, She has a history of a seizure disorder in infancy through early childhood her last mentioned grandmal  seizure was when she was about 5 to 6 years of age. though she was documented to have had frequent Absent seizures however those were never followed up on or closely monitored after she stopped having more obvious seizures, Over the last 2 years or so we have suspected that she was still having absent seizures as she would have frequent memory lapses and had a tendencies to zone out and have stairing episodes. we recently got her into a neurologist who performed an MR! and a sleep deprived EEG however both came back normal, but the neurologist felt that she was likely still having the absent seizures as you don't always catch seizure activity with EEGs. She had us start her on the generic verision Keppra ~6 days ago. Since she started I have become very concerned about side effects. starting this new med comes at a bad time as we started it a week after she ost her mom, so I am not sure if all these are side effects and wat is related to grieving

I gave her the first dose at night  before she went to sleep, that morning(wed) she was really hard to wake and really cranky about being awake. I didn't think to much of it at the time, we had a late night and we were waking u early to get chores done, however as the day on it became clear something wasnt right, she was exhausted throughout the day, any chance she got to be still she passed out and fell asleep she was pretty strongly sedated and occasionally slow to non responsive, and when she was wake she was extremely irritable and highly prone to meltdown,  around noon time her and her fiancé had a bit of a fight and that sort of resolved but while walking back to the house her foot gave out some which set off a strong meltdown where there was minor self harm and inconsolable crying for about 15 minutes, Understand even when she is tired lethargy and napping are not really a thing for her, Even on 2 hours of sleep the lass will still be able to make it through the day and still might not pass out until very late in the night, so this was extremely atypical for her.  Around 4 to 6 pm di she start to wake u and we gave her the afternoon dose  and she seemed ok as far as being awake was concerned after 4, However she was still pretty irritable throughout the night and had at least one more severe meltdown where she hits and bit herself several times before I could restrain her and then held her until she calmed down.

she spent much of the next day (thursday) with her fiancé, he reported that  her energy seemed pretty normal and she seemed pretty neutral emotionally through the morning, around the afternoon she hit what i might describe as a manic state she was hyper extremely hyper, she could not sit still and she was off the walls, to the extent the doctor we were seeing even commented on it. and she kept this state for half the day until she passed out in the car,  they had a nice dinner but the day ended in a severe meltdown again. ''

 

 Friday we got some shopping done she had 2 further severe meltdowns and possible seizure episodes, after calling an on call doctor as by this time we were told to go to the ER with he, after arriving and being told it was completely inappropriate for us to be there we spent 5 plus hours in the ER we went home in frustration and because our driver was unsure about his ability to drive us home safely any later. We wound up back at the ER Saturday night after she had 3 more seizures and started to cough up blood. at the ER she was diagnosed with bronchitis she is now on antibiotics to treat that, she had a few more seizures in the evening  we had meltdown free days but Sunday night she was exhausted so we went to bed early

today she had at least 3 seizures that i noticed and maybe more, one episode nearly got her hit by a car when i realized her hand and looked away just for a minute.  after that she was exhausted, confused and upset. he coordination was also pretty off.

 

she is often irritable and moody and she has anxiety since we started the meds and the self harming meltdowns are nearly everyday.

she also has started drooling especailly after eating

 

she often doesnt realize she has had a seizure but is often very confused after them

I have a few questions i hope it is ok to ask

most of these seizures leave her confused, with poor coordination and often tired, I'm getting more and more worried about her and we are trying to meet with her neurologist before the absent seizures barely seemed to phase her but not these are taking a much larger toll on her could these be a different form of seizure? sometimes they come with skipping verbal stims and if she is standing she will walk backwards in a circle, or just freeze

there is a chance her fiance gave her a morning dose the first day with in 5 hours of her taking her firt doe before bed could that have made these worse or effected the level of side effects? would it have long term effect?

how long until the initial side effects wear off? Will these wear off?

 

I know this will sound weird but could the keppra be causing MORE seizures?

 

she also had a pretty bad head ache Sunday and she has a history of migraines could they be related?

 

she also takes thyroid meds T3 and T4 and metphormin at night ( prediabetic) sometimes if things get bad food seems to help but not always, does anyone know if keppra is better tolerated with food? Any advice in spacing of keppra with the other medications?

 

is there any risk of possible long term brain damage from these seizures?

 

im really just at a loss here and i am very worried for her safety. i had to carry her off a bus because she fell asleep today from the exhaustion. I am worried about other types of seizures developing

what things shouls i worry about as far as safety?

 

oh and today she started indicating she was having random pains shooting through her arms not sure if thats related

if we switch her off Keppra is there a chance these new or more frequent seizure episode will continue?(won't pull her off it without the doctors guidance).

I'm just so lost here and I am exhausted i know i had a lot more questions but i will start here thank you so much! any advice is greatly apprecaited


                                -Tommy

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