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DirtyBlonde
*****
Member since 11/07 7344 total posts
Name:
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Re: And Another One. *UPDATE*
Oh Jeannie 
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Posted 1/13/11 11:01 PM  |
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mommy2bella
Where does time go?
Member since 12/05 9747 total posts
Name:
Kelly
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Re: And Another One. *UPDATE*
just reading this and wanted to send my hugs and good wishes
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| Posted 1/14/11 1:54 PM |
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rojerono
Happiest.
Member since 8/06 13803 total posts
Name:
Jeannie
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Re: Third One Since 12/31... *Yet Another UPDATE*
Rob has rejected the idea of a ketogenic diet. He feels that a high fat, low carb diet is not setting the proper example for nutrition that Robbie should follow for life. He's a huge health buff.
Robbie had another seizure this morning. I can never sleep after those events.
We'll call the doctor, set up the bloodwork and get him on meds ASAP.
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| Posted 1/15/11 6:42 AM |
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Janice
Sweet Jessie Quinn
Member since 5/05 27567 total posts
Name:
Janice
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Re: Third One Since 12/31... *Yet Another UPDATE*
I am so sorry.
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| Posted 1/15/11 7:57 AM |
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Bxgell2
Perfection
Member since 5/05 16438 total posts
Name:
Beth
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Re: Third One Since 12/31... *Yet Another UPDATE*
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| Posted 1/15/11 9:48 AM |
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steph4777
**************
Member since 5/05 11726 total posts
Name:
Stephanie
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Re: Third One Since 12/31... *Yet Another UPDATE*
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| Posted 1/15/11 1:39 PM |
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twicethefun
Loving life
Member since 7/06 4088 total posts
Name:
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Re: Third One Since 12/31... *Yet Another UPDATE*
GL. Some day you will look back at this in better times.
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| Posted 1/15/11 4:06 PM |
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Little-J-Mommy
I'm a Big Brother
Member since 5/06 8041 total posts
Name:
D
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Re: Third One Since 12/31... *Yet Another UPDATE*
Jeannie, I'm so sorry
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| Posted 1/15/11 4:11 PM |
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dawnygirl25
Growing up soo fast..
Member since 1/06 14917 total posts
Name:
Dawn
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Re: Third One Since 12/31... *Yet Another UPDATE*
I am so sorry
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| Posted 1/15/11 8:01 PM |
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LSP2005
Bunny kisses are so cute!
Member since 5/05 19458 total posts
Name:
L
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Re: Third One Since 12/31... *Yet Another UPDATE*
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| Posted 1/15/11 10:37 PM |
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Michelle
My Little Yankee Fans
Member since 1/06 4018 total posts
Name:
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Re: Third One Since 12/31... *Yet Another UPDATE*
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| Posted 1/16/11 3:12 AM |
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Re: Third One Since 12/31... *Yet Another UPDATE*
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| Posted 1/16/11 2:15 PM |
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FranM
And so it goes....
Member since 9/05 2217 total posts
Name:
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Re: Third One Since 12/31... *Yet Another UPDATE*
so sorry you are all going throught this
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| Posted 1/16/11 2:20 PM |
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Moehick
Ready for the sun!
Member since 5/05 30339 total posts
Name:
Properly perfect™
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Re: Third One Since 12/31... *Yet Another UPDATE*
Posted by rojerono
Well we got back from our neuro consult with Dr. Psycho! (it's actually pronounced SEE Koh - but I think psycho is funnier!)
The 2 seizures he had were full seizures - it's rare but evidently there is a possibility that some people can retain some memory of the event.
It is almost certainly BRE based on all of the data they have looked at. He should outgrow it by the time he is 13-14. That is good news.
She recommends that we put him on Trileptal since the occurrence has escalated. She explained that sometimes seizures are isolated events. He had a seizure in August and didn't have another one so it was okay to assume he might not have another or he might only have one more. However, since his events have been clustered recently there is reason to believe they may increase in incident. It's kind of like a seizure 'loop' where the brain I guess gets used to having them? I don't know.
We have decided to wait and see if he has another one within 2 months. We will look to have another opinion from a different pediatric neurosurgeon in the interim - although we are pretty sure they will give us similar info/recs.
We have the prescription for blood work and Trileptal so if he does have another one we can get the blood work going and fill the prescription. If he doesn't.. we will wait it out and continue regular visits with the doctor every 3 months.
I want to AVOID meds because there is a laundry list of potential side effects from headaches to memory loss. ALSO it's a mood stabilizer.. and he'd need to be on it for a minimum of 2 seizure free years and will have to be weaned. AND it depresses the white blood cell count so he might see a lot more (and more serious) illnesses. *sigh*
Thanks for all the good thoughts!
This was Kerri's doctor and she was on Trileptal for 2 years. We got another consult and they agreed with everything Dr Sy-Koh said. Kerri had a hard time adjusting to the meds with stomach upest but after 2 days that stopped. She was only 1 so she couldn't say how the med made her feel but we saw no outward signs of side effects.
Message edited 1/16/2011 5:18:50 PM.
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| Posted 1/16/11 5:18 PM |
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nrthshgrl
It goes fast. Pay attention.
Member since 7/05 57538 total posts
Name:
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Re: Third One Since 12/31... *Yet Another UPDATE*
It sounds like you have a great doctor.
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| Posted 1/16/11 7:16 PM |
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Kathy
LIF Adolescent
Member since 7/05 718 total posts
Name:
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Re: Third One Since 12/31... *Yet Another UPDATE*
I'm sorry
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| Posted 1/17/11 1:14 PM |
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dpli
Daylight savings :)
Member since 5/05 13973 total posts
Name:
D
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Re: Third One Since 12/31... *Yet Another UPDATE*
I hope that the meds make a difference for him. I know it's so stressful for all of you.
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| Posted 1/18/11 1:40 PM |
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jellybean78
:)
Member since 8/06 13103 total posts
Name:
Mommy
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Re: Third One Since 12/31... *Yet Another UPDATE*
I'm so sorry
FYI: My nephew was just put on Trileptal. His seizures sound very similar to Robbies...night time only and he has complex partial seizures. They advised my sister to put him on meds...he started 3 days ago and so far so good. It's so scary.
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| Posted 1/19/11 10:43 AM |
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