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Old 09-16-2006, 10:29 PM #1
Kamie
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Kamie
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Default Zoe Trileptal update

I figured out what has been causing Zoe's rash and her screaming episodes at night.

At first, I blamed the trileptal. However, a little lightbulb turned on when I asked my husband, Michael, to get Zoe a sippy cup of milk. We give Zoe soy milk because she is sensitive to dairy. For some reason, my husband was giving her 2% milk in her cups if I asked him to give her milk. I was shocked. I reminded him a lot of times she is sensitive to dairy and not to give her cow's milk but soy milk. He knew this, but for some reason he had a brainfart. He felt so horrible about this. However, I am so glad we found the cluprit.

After a call to the peditrician and permision to give the poor child children's peptobismol for a few days, she is doing well. The rash around the face that looks like acne is gone. The screaming marathons are gone too.

We do have one new behavior thou to add to the list...............


Zoe is really starting to TALK! Her level of interaction and usage of words has gone up signifigantly since starting her on trileptal. It is actually amazing. She is now running up to me and Michael saying things like BIG HUG and giving us huge hugs. She is singing and saying her ABC's and the Barney "I love you" song. It is like part of her woke up.

Is this typical with a seizure medicine for a child to come out of their shell like this?
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Old 09-17-2006, 12:50 AM #2
RathyKay RathyKay is offline
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Quote:
Originally Posted by Kamie View Post
Is this typical with a seizure medicine for a child to come out of their shell like this?
Each time Tom's seizures got out of control, we saw major developmental progress when we tried a new drug and regained seizure control again. I'd say it's a good sign Trileptal is working for Zoe - clearing out the cobwebs and quieting the noise, so to speak.

I'm glad you have the rash figured out. I know enough Dads who have done stupid things because they just weren't thinking. I feel like I live and breathe this stuff, while Mr. Kay goes to work and has other things on his mind. Anyway, I'm sure Michael won't do that again.

It's so good to hear Zoe is doing better. Much as I hate the drugs, when they work, it's a good thing.
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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 09-17-2006, 01:24 PM #3
firewing5204 firewing5204 is offline
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That's awesome that Zoe is starting to talk. I am glad both your kiddos are doing so well.
Cara
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Old 09-17-2006, 03:05 PM #4
moose53 moose53 is offline
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Hi, ((((((Kamie)))))),

I'm glad you found out what the problem was. Poor Michael -- he must have a permanent connection between the words milk+cup. We all do things by rote without thinking -- 95% of Massachusetts drivers have that condition

I *LOVE* that Zoe's asking for BIG hugs -- that feels wonderful -- doesn't it

She can have all the BIG HUGS she wants. BIG HUGS (and love).

Barb
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Old 09-17-2006, 07:32 PM #5
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When Ava first went on trileptal we saw a nice jump in dev including talking. Then it wore off. We saw a bit of a slip this summer. Ava cntinued havinf SE episodes on the Trileptal so neuro decoded to swtich to Lamital. Now we have seening HUGE bursts in dev.

Glad you figured out the rash. Ava had terrible eczema ... her face, arms and legs would look look like she was scalded. Sometimes it was bloody .. sometimes sores. Dairy seemed to be one of the triggers. She also went on soy.

Good luck. Hope the Trileptal continues to help.
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