Elizabeth,
There are at least 25 different kinds of szs and about
that many meds. I like to type Epilepsy Ontario
into my Yahoo tool bar. That website has a lot of info.
For the szs -- there is a list of them and whichever one you
click-- a description will come up and tell you about it. there
is a lot more info there also.
Millie
> yes shes been weaning off for a week tomorrow. Im not really worried about
> the weaning and getting off the keppra totally. Shes been on it for two
> years and what the side effects have been its worth her getting off ot it.
> The pros out weight the cons of getting her off of it. Tegratol didn't
> help and made her loose her hair and have a rash, depakote made her gain
> 15 pounds and didn't help that much either. Keppra has been good but its
> not stopping the seizure and the side effects are beginign to get worse
> which happens when she is getting immune to her drugs.
> Im wondering more about the jerking in her arms and legs then anything
> else while Im waiting on her epitologist to call me back!
> Thanks!
> Elizabeth
>
>
>
>
>
> ____________
> From: "mylmy@bnin.net" <mylmy@bnin.net>
> To: epilepsy@yahoogroup
> Sent: Tuesday, June 30, 2009 8:49:12 PM
> Subject: Re: [epilepsy] Question: withdraws
>
>
>
>
>
> Elizabeth,
>
> Is your daughter going off of Keppra now? Maybe she
> needs both meds. Every person has to find their own med.
> Just because Dilantin and Phenabarb work for me doesn't
> mean they will work for anybody else.
>
> Most of us have found that brand name meds work better that
> generic. I know brand name Dilantin is stronger than the
> generic.
>
> Millie
>
>> I ushually dont post on here but try to help other with what I have
>> learned from the past 6 and half years of my daughter having ep.
>> My 6 and half year old daughter has had ep since the age of 2 weeks. We
>> live in Texas we have been to Lubbock, san Antonio, San Angelo, Dallas
>> and
>> Fort Worth and Austin to see nuerologist. Till we finally got to go to
>> Houston to Texas Children's Hospital to see an epitologist. We finally
>> got
>> a diagnoses last August that yes its ep and that its because of her
>> metabolism. My daughter has been on Keppra 8 ml am and pm and Vitamin
>> B-6
>> (for the emotional side effects of keppra)since August and shes been on
>> keppra in general for two years. We just went and saw her epitologist
>> and
>> we decided that if Keppra was going to be her drug of choice to stop the
>> seizures it would have already done it. So we added zonisamide (geniric
>> of
>> zonagram) 100 mg at night with a smaller dose of 7mls of keppra. Since
>> we
>> added the new medicine the side effects of the keppra like her very bad
>> and tramatic axiety, emotionalness, moody swings etc have been less and
>> shes doing so good. I mean she is totally a differant child. I talked to
>> her epitologist via phone last Wednesday and we had the pediatricians
>> report that Karon is doing much better on the medicine and we all were
>> in
>> agreement to start wheaning her off of the keppra at this time 1ml less
>> at
>> a time per weekly. As in last Wednesday we went from 8mls twice daily to
>> mls twice daily and then tomorrow will be 6 mls twice daily and
>> continues
>> for 6 more weeks till shes totally off. Since we added the zonisamide
>> four
>> weeks ago tomorrow she has been seizure free except we speculate that
>> she
>> did have a bad seizure we didn't catch at some point in time but other
>> then that seizure free and a totally differant child.
>> My question is:
>> she came to me last night and her arms and hands were jerking. Not
>> really
>> fast or hard liek her grandmal but jerking forcefully. I made sure she
>> had
>> her meds on time and everything. She was standing right in front of me
>> talking and able to walk and function like normal except her arms and
>> hands were jerking. Then when she got in my bed her feet and legs were
>> doing the same thing. Shes been checked by her peditrician and my
>> daughter
>> is pretty much on what she calls lock down. We aren't leaving the house
>> etc and shes limited to where in the house she can go without her
>> seizure
>> alert/service dog or her brother, me or her Pawpaw (my dad). We have
>> been
>> told to watch and observe which is fine with us we dont want to medicate
>> more then what we have. And we are waiting on a call from her
>> epitologist.
>> Just wondering if anyone has been throught his or not?
>>
>> Sorry its so long to explain!
>> Thanks!
>> ELizabeth
>>
>>
>>
>>
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> [Non-text portions of this message have been removed]
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>
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