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Old 01-12-2005, 06:53 PM   #1
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Unhappy i think Gage may be progressing or having breakthroughs???

Well, everyone, I think the inevitable has begun. I am beginning to think gage is either progressing or his meds aren't working anymore.

we were sitting at a friends house eating dinner and gage and his best friend were watching TV and i for some reason just happen to be watching him closely. sure enough as i as sitting there his eyes were going goofy. so i sat a little longer. his eyes are doing the blinking thing again, only this time it was weird they weren't blinking at the same time. it was like they were each doing there own little thing. one would blink real hard and go one way while the other one would do it different. i had seen it every once and a while he was doing things, but for some reason this time was more "active" if that makes more sense. i had noticed the tempers and whiny attitude coming back, but i figured it was just a phase, but now im not so sure.

i don't know why this caught me off guard. maybe because i was thinking that he was at this hiatus, and doing so well. now i feel just like i did when i first found out a year and half ago. could it be that his meds just need adjusting. he hasn't had any growth spurts or anything lately. or could it also be that he is progressing. so many questions again. I will be calling the pede. as soon as I drop him off at school, talk with his teacher and see if she has noticed it, and get back home. Could it be the movement ont he TV i wonder. He never responded to any photo testing for any of the EEG's though.

you know its funny, i just had cassie in to the pede a week or so ago and she asked about gage and i told her it was all fine. doing real good. i did mention the tempers a bit but chalked it up to the holidays and what not.....now im not so sure.....a while back she had mentioned doing an EEG at his yearly check up and said because he had the VEEG in April we would keep it on yearly schedule from that one. I wonder if they will schedule one now? Any help on this would be grateful. Help ease a frantic heart and head.....again!
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Old 01-13-2005, 10:24 AM   #2
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Re: i think Gage may be progressing or having breakthroughs???

Jennifer, I am so sorry you are seeing things in Gage...So scary! I would at least call back the pede and talk again about what you are seeing. Sometimes meds just need to be tweaked a bit.....


Hang in there. I hope things settle back down!
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Old 01-13-2005, 10:42 AM   #3
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Re: i think Gage may be progressing or having breakthroughs???

Hi Jennifer.

So sorry about this, I know how you feel. This seems to be how it happens with Bonnie. I think it's getting better and then I start seeing them. I don't always know when she has them because she doesn't tell me. I'm sure I miss a lot of them. I definitely see a connection with her behavior and her seizures.
As you say with his temper and whining. Me and Bonnie get in a lot more arguments when she is seizing. I tell her I can tell when she is having more, just by her behavior with me! We never had any photo testing done, but I don't think that has anything to do with Bonnie's.

Gage and Bonnie's seem to be similar.

I wish you both well, probably time for med adjusting. Let us know what the doc says.

Debbie

 
Old 01-13-2005, 07:55 PM   #4
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Re: i think Gage may be progressing or having breakthroughs???

Hi Jen,

Sorry to hear about Gage...could have been the TV, but if you have seen the tempers again, I don't know if I would blame that alone.

I would also call the pede and see what she says. Take it one step at a time...

Let us know what happens...I'll be thinking of you

Vicki
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Old 01-14-2005, 04:30 AM   #5
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Re: i think Gage may be progressing or having breakthroughs???

well i dont have any news yet, as i had called thursday morning at 9am and i still have yet to hear from the neuro. i had called the pede but they suggested to call the neuro. and i guess i really didnt expect anything less from the neuro given there past history. ggrrrrrr! oh well maybe today. iwill definatly post as soon as i hear ffrom them though. tlak to you all later today.
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Old 01-14-2005, 08:39 AM   #6
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Re: i think Gage may be progressing or having breakthroughs???

Jennifer,
Sorry you are having such a hard time. We are in the same boat here although I don't see Patrick having as severe Peti Mal (absence seizures) as he did before he has had two more grand mals in 8 days. It sounds like us you may need a med change. We go for a morning level this am. I actually took him yesterday but they were unable to get any blood after sticking him three times at our local lab. Sigh. I'll be taking him to the lab near his neuro's offfice this morning. Unfortunately it's quite a ways away.

I asked the neuro if the depakote could be contributing to him having grand mals. He said it's probably puberty. Pat's only ten but he's big for his age and is seems to always be in a growth spurt. The neuro said many kids seizures get better during puberty but others get worse. I hope Gage is the opposite of Patrick and he improves as he ages. Seems we will have a bit of a struggle controlling Pat's E due to hormones.
Anyway hang in there. My thought and prayers are with you, your son and everyone here.

Julie

 
Old 01-14-2005, 12:37 PM   #7
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Talking Re: i think Gage may be progressing or having breakthroughs???

Hey Jen.... You know how neuros are, takes them forever to get back to you, so hang in there!!!! What did the teacher say when you talked to her? She notice anything unusual?? Give Gage a hug for us, and a squeeze for yourself and know we are here for ya' whenever you need us!!!!

Lisa T
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Old 01-14-2005, 06:46 PM   #8
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Wink Re: i think Gage may be progressing or having breakthroughs???

hi everyone and thanks so much for the upbeats

i had talked to the teacher and she hasn't seen anything really of concern. A blink here and there. Same with my sister, who watches the kids while I am at work. The only time my sister saw something was when he was watching TV. The first time for 30 seconds or so, the second time was a good 2 minutes. Blinking funny, pulling bottom lip in under his top teeth. The same as when we found out.

the neuro finally called back this afternoon, and they scheduled an EEG for next Thursday the 20th at 1 in the afternoon. not a sleep deprived one thank goodness. gage is on 1250 mil. of zarontin right now and she said we will see what the EEG shows and they may switch him over to depokote(sp), because he is at a pretty high level now on the zarontin and they really don't want to up it any more. so now i am officially on the merry-go-round of meds huh? i guess we will have to wait and see what the testing shows. wonder if they will concentrate on the TV type stuff, since that is when he does it the most. or will it show up regardless? they said it will take week to get the results back...well considering its this neuro.....maybe longer..

Any input in this new med would be a big help? Maybe ill put this in a separate post.
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Old 01-16-2005, 11:23 AM   #9
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Re: i think Gage may be progressing or having breakthroughs???

Hi Jen

I'm glad they are going to do some more testing, let us know what they find. This merry-go-round with the meds is really a bummer. Hopefully they'll find the right one.

I wish you could have a neuro like Bonnie has. She called me back the other day because I hadn't called her yet! She really cares. It helps when you can talk to the doc quickly. So far we have been very lucky with this.

I don't know alot about the t.v. stuff, hopefully that will show up if it's a problem, ask the doc about it.

Good luck
Debbie

 
Old 01-17-2005, 06:53 PM   #10
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Re: i think Gage may be progressing or having breakthroughs???

I know I always had more seizures as I was watching t.v. I have related mine to the photo sensitive side of epilepsy(2% of epileptics are effected by this) which makes the pics on the side of the screen make me jittery as I've gotten older and worse. If I had meds I'd prolly be alright though I mst say that computers and t.v.'s for someone who is photosensitive can be very trying even though we feel compelled to watch them. If he is experienceing this sort of thing I would recommend watching his doctors closely and always believe him if he tells you something because there are things out there that the AMA wouldn't want you to know about his illness if he really does have this side of it. One up side is I relate it to my near photographic memory so the up-side is if he has this sort of thing he can most likely keep his mental state in tact for quite some time compared to others who have much more difficulty. Also it never helps to yell at your kids for something they have no control over(wish someone woulda told my parents that instead of saying that it was all in my head and to just yell at me for it.) May love go with you both everywhere you go.

 
Old 01-21-2005, 12:25 PM   #11
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Question Re: i think Gage may be progressing or having breakthroughs???

well we went for his EEG on Thursday. they said to call Tuesday for the results. I'm going to have to do it from eh hospital as it is cassie's surgery day, so i will post here as soon as i can.

you all know about the breakthrough seizures but i am beginning to wonder if something else isn't going on too. gage had the flu last weekend. so he was off his meds for 2 days because he couldn't keep anything down. he was fine come Monday, but come Tuesday he has pretty much become very listless. he isn't eating hardly at all, very tired , very "whiny", complains of being dizzy a lot, and having a belly ache. now he eats breakfast but it just goes downhill from there till bed time. it just seems very weird to me. he had me come and get him from school today for not feeling well and just woke up from a 3 hour nap. could this be from the breakthroughs or am i reading into it to much. he only had the 24 hour bug and like i said he was fine and normal come Monday. here it is Friday. i dont know maybe i am being a worry wart, but something just seems off. thanks for the ear to chat into.
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Old 01-23-2005, 09:18 PM   #12
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Re: i think Gage may be progressing or having breakthroughs???

Hi Jen,

Let us know about Gage, how's he doing now?

I hope all went well with Cassie's surgery. How'd she do? Did you invest in popcicles?

I'll be waiting for your post,

Vicki
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Old 01-24-2005, 04:22 AM   #13
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Talking Re: i think Gage may be progressing or having breakthroughs???

hi Vicki,

don't know anything yet. cassie goes on tomorrow for surgery and im half tempted to call them today and see is the results are in yet. im gonna be a little busy at the hospital and it would give me one less thing to have to worry about. it was done right in the same place as the neuro is so you would think she would have read it by now. we shall see. as soon as i get something ill let you know OK.

he seems to be feeling better. i think being off his meds those two day while he was sick really affected him. we had a rough weekend, but he seemed to start being better as far as tempers and stuff last night. well he is back in school today so he will be back in routine. have a good day and thanks for thinking of us
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Old 01-25-2005, 08:35 PM   #14
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Re: i think Gage may be progressing or having breakthroughs???

Sorry, I got the days mixed up...

We"ve been sickies here too...BAD colds...I hope I'm not next! I don't have time for it!

I'll be thinking and praying for you guys.

Vicki
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Old 01-27-2005, 04:05 PM   #15
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Re: i think Gage may be progressing or having breakthroughs???

well we made it through her surgery. i guess her adenoids were so big that they had started to grow up into the nasal, sinus cavity. she is OK though. we have been fighting a fever here and there but nothing really that bad. she actually slept all night last night and this may sound weird but .,.. what a sweet sound it was to hear her breath thru her nose. lol

still nothing on gage's EEG. i had called today and the neuro still hadn't read it ....im not going there right now ill end up saying baad bad things . i just really hope that he doesn't need a med change and they are playing around waiting to read the EEG, when he should be on the med. still having the breakthroughs. that's all i have for now. than you all for the prayers. it was nice to come home from the hospital and read them all....oh....stocked on the popsicles, but she really isnt eating them. Oh well...there is always me.
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