Frustrated parent.....

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jesterjkl

jesterjkl

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I'm a Father of a 4 yr old little boy who has a seizure disorder. In the last 6 months he has had several "cluster" break throughs. Every time we are told to go to the ER by both the family Doc and the Nero. Then every time nothing is found out. Today he has had a total of 8 in the last 18hrs. I know there must be something wrong but I get nothing from the docs. And Nero is a good respected one that does well with children.
 
Hi and welcome,

The dr. didn't do anything ---- after your son had 18 seizures?
 
Hi jesterjkl, welcome to CWE!

You might want to seek a second or third opinion from another neurologist, even though you have one with a good reputation. It can't hurt, and it may well help. Does your son have a treatment plan (either medication or diet)? Do you keep a seizure diary tracking his symptoms? It might help the docs get a handle on what's going on.

Best,
Nakamova
 
He is currently on keppra and leviteracitam. We just started journaling last week and started videoing today.
 
That's great, I hope you get some answers soon.
 
Videoing can give some very important clues to the neurologist: duration of seizure, types of movements, etc. Check the eye reflexes and breathing patterns when the seizure if over. Anything that could be relevant.

Wish you the best of luck.

I’ve filmed my son for months at night because he has nocturnal TLE and diagnosis was far from obvious.
 
Well, we got admitted to the hospital after having 2 more seizures. Now we get to be here for about 2-3 days for observations and to get seizures under control.
 
I'm so sorry you aren't getting the help your son deserves! If you live in the pacific northwest, have you considered having him referred to an epilepsy center for more extensive testing and observation? There is a highly acclaimed epilepsy center in Seattle called Swedish Epilepsy Center. Maybe they could help you. I think there might also be one in Portland, OR.
 
Well we got to come home today. Yeah!!! He is now Dilatin. To my understanding, we will be weening off of Keppra, but staying on Leviteracitam. Luckily he finally had a seizure in the hospital so that the doc's got to see for themselves. It was the worst one that he has ever had, but the doc said that even it was mild on the severity scale. Now we are having troubles getting new med. Our usual pharmacy is out, and no one else in town has it. They are trying to get an emergency allocation from hospital for today and tonight. It sucks having to wait on phone call. Not to mention that the hospital is one town over from me.
 
Thank you all for support. So far so good. We were able to get meds from hospital that same day. Luckily that pharmacy went ahead and filled the entire script. Our main pharmacy has put that med on a "profile" list for us, that way it should be there when we need to refill.
 
It's good that the hospital came through with the meds. A quick question -- you mentioned that he was weaning off Keppra but staying on Levetiracetam -- those are actually the identical medication (one is the brand and the other is the generic). Maybe you mean a different med? Or is he just switching from the brand to the generic (usually done to save money).
 
Nakamova said:
It's good that the hospital came through with the meds. A quick question -- you mentioned that he was weaning off Keppra but staying on Levetiracetam -- those are actually the identical medication (one is the brand and the other is the generic). Maybe you mean a different med? Or is he just switching from the brand to the generic (usually done to save money).
Click to expand...

yes, i was thinking the same thing.. i am on keppra and i believe keppra is the exact same thing as levetiracetam, just keppa is the 'brand' name
 
I'm really sorry about that. With all the medicine talk lately I got mixed up. Yes, Levetiracetam is Keppra. His other med is Lemictal.
 
No need to apologize! I hope the Lamictal works well for him.
 
yes- i agree!! there's no need to apologise- i can't even seem to spell it right!! I meant Keppra, not Keppa! :) i hope the docs start supporting you and your son better, best of luck
 
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