Hi! Update on Zoe and Nathaniel

[Kamie]

I am so happy to have found Braintalk's temporary home. :)

I was lost without it! Seriously!

Okay, since the great outage, a lot has happened.

The good:

1.) Michael got a major promotion and raise at work! :) This is very good news for us.

2.) Nathaniel does not need a g-tube and infact is about to be discharged from GI.

The not so good:

1.) Zoe's seizures have increased. She is on trileptal. We are noticing side effects of behavior changes and an acne like rash. I discontinued it and told the nurse I am not giving her more until a doctor assures me that it will not harm her.

2.) Zoe is going to be getting AFOs.

[langansmom]

So glad you found us! I had the same reaction when I got to this new site. I missed everyone so much!!

Congrats about the promotion and Nathaniel's good news. Yay!

Sorry about the seizures. I hate seizures.

I know some kids who do really well on trileptal. Langan was not one of them. Her seizures increased dramatically, even on a low dose. She had her first ever status seizure a few days after an increase and her second one after another increase. Our neuro pulled her off of it after the second one. Langan also had times when she woke up screaming on trileptal, but she has done that when she wasn't on it, too (although not as much) so not sure if it was related in her case. I do think it's possible it was seizure related.

I hope you are able to get some relief for her soon.

(((hugs)))

[GinaMarie]

Welcome Kamie!!! So glad Nathaniel is doing so well and so glad for the promotion!!! Raises are good!!! :D Sorry about the seizures tho. :( Since Braintalk has been down, my doctor thinks Im having seizures also now. I had an abnormal eeg and some other problems. I hope the new med works for Zoe.
I read this earlier but couldnt post.
HUGS
GM

[Busymommie]

Hi Kamie!

Awesome news about Nathinal... I bet he is getting big :p

I do hate to hear about Zoes seizures. I am with Wendy in the I hate seizures club. Riley was on Trileptal for a while a couple of years ago the only real problem we had on it was that she was having rages that were unreal.

There are other AED's don't give up hope.

((glad to see you here))

[Tracy Sheppard]

Great you found us......Happy to hear all the great things with Nathaniel. As for sweet Zoe so sorry to hear about the seizures!!!! I bet the kids are getting big......

[PaulaScott]

Good to "see" you again! Sorry about Zoe's sz, but AFO's aren't so bad *if* you can get them to fit correctly. Still fighting that battle ourselves. So happy to hear that Nathanial has progressed so well and does not need a g-tube! Wonderful!

Looking forward to reading more about how they are doing.