18 month old dx with epilepsy.mom having nightmares.please help.

Bersaa

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Hi,
My 18 month old was dx a month ago and started on keppra.To give you a little hx he was a normal toddler till 12 month old. After his mmr vaccine he developed seizure on the 8 th day . Since there was fever of 103 they said it was one and not to worry . It was a prolonged kind he was in it for 30 mins at that time.His MRI, eeg , everything was normal. This was in February. Fast forward to July he suddenly started having chills like feature when he woke up from naps. It only happened in the middle of naps.he would suddenly wake up and be hot and flushed and seem like out of it for a few seconds and snap back into reality.after a few days the duration seem to get longer and it started after every naps.one night it went longer and frequent so we took him to the ER.From there we went to children's hospital where he had a more prolonged one and they do him with seizure and put him on keppra.

I know nothing about epilepsy, we have no family hx of seizure on either sides of the family. So from a febrile seizure fx which seems pretty common to seizure/ epilepsy fx seems surreal. Googling keppra came back pretty scary.

The main thing is after starting keppra he has more tantrums, seems to scream a lot, goes from one activity to another in a second and is more irritable. He is also more tired and less hungry. His sleep is kind of troubled. He tosses and turns all night, gets up and sleeps back in( he was never a good sleeper though) but not this bad.Has what seems like myoclonic jerks all over the legs when he sleeps after starting keppra.His balance seems kinda off from last few days. He tips and appear clumsy. It seems like he has muscle weakness or something.

Getting to a neurologist seems like really hard. The most I can reach is a nurse practitioner who wants to increase his dose. I am frustrated.i need some opinions on what to do next from people who have been there. Is he developing other kind of seizures? Does it feel like keppra is working enough.is it just muscle weakness or something more? How do I find out? I am really worried for my child please help me out.
Thanks for reading.
 
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I am not sure how much help I will be, but I wanted to tell you I understand how you are feeling. I have a ten year old who was completely normal until last Dec. He too is on Keppra.

If I were you, I would get on a wait list to see a neuro. I would not be comfortable with a nurse practitioner. It seems to me that you seem to be wondering whether the problems (irritability, problems sleeping, clumsiness) are due to seizure activity or med side effects. I guess you could go with the nurse practitioner's advice and increase meds to see if that helped, while you wait to see a neuro.
 

Nakamova

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Bersaa --

It can be tough to tell with a child, but it sounds as if the Keppra may be doing more harm than good. A pediatric neurologist would be your best bet for evaluating the medication, so if there's any way to see one, the sooner the better.

Keppra IS known to disrupt sleep and cause crankiness and anger, so it's definitely possible that the tantrums are related to the medication. Some folks have found that a B6 supplement helps offset the mood-related side effects, so you might want to check with your son's pediatrician about adding that it in.

Anecdotally, some people have found that making dietary changes have helped with reducing/controlling their own or their child's seizures. What works for one person may not work for another, but if you'd like to read about some of those approaches, you could start here: http://www.coping-with-epilepsy.com/forums/f23/dietary-changes-seizure-control-25355/ With any change in treatment approach it's best to consult with the doctor first.

Good luck, I hope you and your son get relief soon.
 

seagull

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has pediactrc neurologist actually told you he has epilepsy..personally I would wait until you got finite diagnosis until you seen PN try not to worry so much...I think you got kick arse to see one..Giving a child keppra or anything without that seems strange thing ER to do.
 

jimj

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I also think you should get seen by an epileptologist or at least a neurologist as soon as possible. How many seizures has your child had and how long have they lasted?
 

seagull

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if he has another one can you insist er doc to refer you or do it not work like that in States..certainly your gp should done something by now
 
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