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Post by admin on Dec 4, 2005 21:53:21 GMT -5
Just wondering, hope the boy is ok, he is usually on and off here more often. Just starting to worry a little.
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Post by kg5388 on Dec 4, 2005 22:17:35 GMT -5
haven't heard anything mike and with those high temps i'm worried to
let us know scott
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Post by michihunter on Dec 4, 2005 22:41:55 GMT -5
If it wasn't so late, I'd give him a call. Hope everythings alright.
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Post by admin on Dec 5, 2005 8:39:44 GMT -5
Ok, I'm a lot worried now, I take it no one has heard from him?
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Post by intruder on Dec 5, 2005 12:43:43 GMT -5
haven't heard from or seen him on here  he did say they had an appt. today so maybe they are there |
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Post by admin on Dec 5, 2005 12:47:26 GMT -5
Well let's hope that's all it is.
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Post by admin on Dec 5, 2005 14:42:45 GMT -5
Ok, I have to go to work here in about 45 min. If anyone here's anything please post it. I will be checking from work.
Scott, when you read this, I sure hope everything is working out for you buddy.
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Post by ScottC on Dec 5, 2005 16:45:57 GMT -5
Things are going better today. Thanks for your thoughts. When Scott has hight temps, not only is he susceptible to more seizure activity, but his equilibrium is not so good. Also, since he had a seizure while napping, one of us has to be with him while he naps. I sleep in his room at night.
His temp was normal this morning, but was over 100 around lunch. More meds and he is below 100, for the time being.
Thanks again for the thoughts and prayers.
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Post by michihunter on Dec 5, 2005 20:29:54 GMT -5
Thanks for keepiong us in the loop Scott. Scotty's are nephew now!! He's got a family from all over!!  |
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Post by ScottC on Dec 5, 2005 21:01:37 GMT -5
Thanks for the phone call, Ted. I appreciate it.  Here is the link for you, and for anyone else interested in the type of epilepsy my son has. www.epilepsy.org/ctf/dravet.html |
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Post by michihunter on Dec 5, 2005 21:24:29 GMT -5
It was my pleasure Scott!! You are a great dad and I thought I'd at least touch base and see if there was anything you needed. Scotty is in our thoughts constantly. I appreciate the link. I felt ignorant due to not knowing anyone affected in that way. I just hope God will shine down and bless your little boy with His healing. He already gave him the blessing of great parents!! If you ever need anything, please call.
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Post by kg5388 on Dec 5, 2005 21:34:32 GMT -5
my friends sister had a form of it and we were packed three deep in a little toyota truck you remember haw little they were in the 80's and she had a GM she beat us bad and tore up the dash and kicked out the windsheild it is a terrifing experiance and i can't imagine having to watch my child go through it but YOU are da MAN and i think your one of the most dedicated fathers i've had the pleasure to know
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Post by admin on Dec 6, 2005 2:00:47 GMT -5
I am so glad to hear he is doing better, I think what Ted and Kevin posted pretty much sums it up and I endorse both statements.
I would like to ask a question though. Is this something that will get better as he get older? Please forgive my ignorance, I haven't read anything from the link you posted but I will. The reason I ask is, I have an uncle, we are the same age, and when we were kids, we were at the park playing basketball and he started doing strange things and falling down and shaking, and us being kids we just thought he was clowning around. Turns out that he was having a ceasure. I can remember him having a few more but as time passed they seemed to stop. So I was just curious.
We will continue to keep him in our thoughts and prayers.
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Post by ScottC on Dec 6, 2005 10:18:51 GMT -5
 Thanks for the compliments...but I am just doing what any other dad would do, and that is care for my kid the best I can. Mike, as for your question: No, it is not something he will grow out of. We are still trying to find the combination of meds from the limited group we have to choose from. The one thing about pediatric epilepsy, there isn't a lot of money to be made, so not a lot of testing is done by the FDA. 
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gimlet
10pt Buck Hunter
Posts: 105
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Post by gimlet on Dec 6, 2005 15:55:07 GMT -5
Scott If he your doc hasent already ask you about CYBERONICS or informed you about them ask him it has helped me with my epilesy alot its not a med its a devise they put in to you to help stop sez.if you want more info email me at sgtcampb@yahoo.com gimlet
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Post by ScottC on Dec 7, 2005 13:11:51 GMT -5
Thanks gimlet. My son's epileptologist brought that up when my son was 3 y.o., but he was too small for it. He also didn't have his exact diagnosis of Dravet's Syndrome yet. It had not been brought up since. I believe it is because my son has thousands of small seizures to contend with too. My son is not a candidate for surgery either.
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Post by admin on Dec 7, 2005 13:15:28 GMT -5
What's the update on the little fellow Scott, is he doing any better?
Have you gotten any rest yet?
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Post by ScottC on Dec 7, 2005 13:26:09 GMT -5
He is back in school, but was wiped out when he got out yesterday. He fell asleep by the time we were a 1/2 mile from school on the ride home. His eating is down, which is bothersome. Still unsure of the cause of the high temps. I might have to stay home this weekend instead of hunting Saturday. Just to make sure he is stable...back to his base.
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Post by michihunter on Dec 7, 2005 22:16:36 GMT -5
Well our prayers will continue for the little man!! |
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Post by admin on Dec 8, 2005 2:10:42 GMT -5
I'm glad to here he is doing better, sorry about the hunt but I'm sure you will agree that it's for a worthwhile cause. There will always other hunts.
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Post by ScottC on Dec 8, 2005 7:08:39 GMT -5
Ohyes, Mike. He is worth it...plenty of season left after this weekend. Without going into details (yuk), he was still a bit under the weather last night.
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Post by admin on Dec 8, 2005 9:53:36 GMT -5
Well we'll continue to keep the little fella in our thoughts and prayers.
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gimlet
10pt Buck Hunter
Posts: 105
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Post by gimlet on Dec 8, 2005 12:42:30 GMT -5
scott the reason i bring it up my sisterinlaws daughter has the same thing and she has one and it takes care of alot of the small ones plus helps with her gr mau.also shes total care at 22 she wasnt ex. to live past 2yrs. anything that helps with these things is a plus ive had them since 85 fore no reason no head trama at all but i was exposed to agent orange but the va wont agree to that yet but they pay for the drugs and the vns now just thought id give you a heads up it works great for us an ive had it in for over 7years now and thats better then meds.any day
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Post by ScottC on Dec 8, 2005 13:58:18 GMT -5
Gimlet, I will check with my son's epileptologist. This guy is the tops in his field for ped. epilepsy, and if it was an option, I'm sure he would have brought it up again...but I will ask. We are just about to start another non-FDA approved drug. It will either help, or it will be used to wean him off another drug in preparation to try the Ketogenic Diet.
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Post by kg5388 on Dec 8, 2005 19:27:59 GMT -5
glad to hear he is doing somewhat better still in our prayers
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he did say they had an appt. today so maybe they are there 
Thanks for the compliments...but I am just doing what any other dad would do, and that is care for my kid the best I can.