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Old 09-06-2006, 11:43 AM #1
Busymommie Busymommie is offline
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My Mood: Bye Bye Monotherapy... on two AED's now.
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Unhappy Bye Bye Monotherapy... on two AED's now.

Dr.Parrotts nurse Leigh called me back yesterday about the increased seizures and the side effects that will not go away from the Topamax, he wants to add Keppra to her Topamax.

I have known for a long time that this was going to happen. It was no surprise, but it was something that I had wanted to avoid, very much wanted to avoid. I am torn between optimism and anguish. This could be the magical solution to the seizures that just won't back off. At the same time it rips my heart out that things have progressed this far, what does the future hold for her?

I am concerned about Keppra being his choice, I know she wasn not on it long when we tried it before but the short time she was on it was aweful, she was so agressive it was unreal. Leigh said he didn't really think that would be an issue this time around but to let them know if it started to be a problem.

Tonight will be her first reduction with the Topamax and the addition of Keppra.

I am a nervous wreck.
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Denae- Mom to
Riley (9)- Lennox Gastaut Syndrome & Charcot- Marie-Tooth
Brittany (11) a Prissy Princess
Sarah (14) Aspergers Syndrome
Victoria (16) Above Average Teenage sister
Jade (11) my niece, but now also my baby
Jacob (6) Possible Aspergers, but we have to sort through his anger/abandonment issues first
Jackson (4) The sweetest little guy you will ever meet.
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Old 09-06-2006, 11:52 AM #2
jjbeck jjbeck is offline
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I am sorry Denae. I have heard good things abut Keppra. Did you neuro not consider Lamictal? Fewer side effects i think. beside sleep issues, Ava is doing pretty good on it.
Hope things improve soon.
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Old 09-06-2006, 12:21 PM #3
Mother's Heart Mother's Heart is offline
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sigh.

(((Denae)))
prayers this works out marvellously and erases all the bad feelings that go along with having to accept it,
cj
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Old 09-06-2006, 01:53 PM #4
langansmom langansmom is offline
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Denae-

(((((hugs))))) to you and to that sweet little redhead! I know you are stressed about this but it could just be the answer you're looking for. Fingers crossed here that it is.

I am so glad that Dr. Parrot is being aggressive with these damn seizures. I just KNOW he's going to find an answer for that sweet girl.

Keep us posted!

Wendy
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Wendy, mom to Langan, the love of my life, born 7/19/02. Global delays, intractable seizures, mystery girl. VNS implanted 2/10/06, now on small dose of lamictal and fighting for seizure control, and wife to Jon, the other love of my life!!
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Old 09-06-2006, 08:54 PM #5
wheeliebird wheeliebird is offline
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Denae, Saying Prayers that this all works out for the best!! I can't imagine how your "Mommy heart" is feeling right now. Let us know how it works out for her!

{{{HUGS}}}

Robin
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Old 09-06-2006, 09:22 PM #6
RathyKay RathyKay is offline
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(((Hugs))) I remember the last time you tried Keppra. (I guess it'll be a loooong time before you forget.) I am glad you're reducing Topamax. I was getting concerned with the side effects. (And, of course, you're making all of these changes to make *me* happy.) Is it "officially" tinnitis from Topamax? I hope Keppra goes much better this time. Riley is on a multi-vitamin, isn't she? (And it's gluten-free, too?) Don't forget the B6 for moodswings and lots of water... both for Topamax AND Keppra. Prayers for calm days and nights, as well as seizure-free days and nights.
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free.
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Old 09-06-2006, 10:28 PM #7
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Tracy Sheppard Tracy Sheppard is offline
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{{{{Denae}}}}}
My mommy heart just breaks reading your post. Know that prayers are going up that this will work for sweet little Riley.....Hugs dear...
Tracy
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Wife to Scott for 19 yrs, mom to 3 Joshua 17, Megan 12 , with CP, non mobile, non verbal, CVI, seizure disorder (no meds, only few seizures here and there), etc....Most wonderful little angel ever put in our lives.....Jacob 4 yrs old


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