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Old 01-14-2005, 06:10 PM   #1
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gagcas HB User
Question looking for anything on depokote

hi,

im looking for any info or experience with depokote. my 6 year old may be switching to it post EEG and i was wondering if anyone with someone that age has taken it and could give me some back round on it. he is on 1250 mil. of zarontin and started to have breakthroughs. this might be thier next step. thanks a bunch in advance.
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jennifer

 
Old 01-15-2005, 10:11 AM   #2
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Re: looking for anything on depokote

Jennifer,
Patrick is on depakote. He's up to 1500 mgs. His neuro says it's the best med for his type of E, generalized like Gages. I forget but did you say that Gage has had grand mal's before? From what I understand Zarontin only covers the Petit Mal (absence) Patrick's neuro made us decide which to start him on he felt that because of his age (9 almost 10 at the time) that depakote would be best since it covers absence, myoclonic and tonic clonic. I had to ask him if it was his child if this is what he'd put him on. He said yes. The major complaint I have with the depakote is that slowing of cognitive function. The doctor really likes to downplay it and blames it on the seizures but I definitely notice a differance. Patrick's critical thinking skills seem shot. He's also gained close to 10 pounds while on it. It really makes a person hungry and seems to slow down the metabolism too. Of course some people it will have the opposite effect on and they'll lose.

Another strange thing is that before depakote Patrick only had absence seizures. Since being on it he's had at least 3 grand mals that I've witnessed and two supected other that I didn't. The neuro is now blaming it on puberty. Patrick doesn't show any signs of puberty but he is in a big growth spurt. Who knows? I hate that I have to give him anything especially a drug that has so many side effects but we have to stop the seizures right? Anyway hang in there. They'll probably start Gage off on a very small dose. Patrick started on 250 mgs. Make sure you talk to your neuro about supplements to prevent the hair loss associated with depakote use. He had us get a multi-vitamin that has selenium in it.

Good luck with the EEG. We are having a sleep deprived one next week. Oh boy that sounds like a ton of fun.

Take Care,
Julie

 
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Old 01-15-2005, 10:55 AM   #3
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Re: looking for anything on depokote

Hey Jen,

As you know everyone has different tolerance to AEDs. Out of all of the meds Katie took, I have to say Depakote was the worst. However, she never took Topomax or Dilantin, and I have heard those are touchy ones too.

Katie went from 110 pounds down to 88 in less than 4 months. She lost all of the hair on her body...I mean ALL! She didn't have to shave her legs for months. Her ponytail went from a thick quarter size around to less than a DIME around. There was hair falling out everywhere. She had no appetite and was almost anemic. They tested her for a bunch of stuff before taking her off of the Depakote. We said enough is enough. She was 12 when she took D. Didn't notice any cognitive isues as she started the med before school started and was on it for about 2 months of school, if that.

So, you can see our experience. It also did not control Katie's Complex Partials fully and puberty was also in FULL swing at that time. Her period started within the year of going off of D.

Unfortunately the meds are trial and error. I have read alot of negative on here about Tegretol, and it worked for Katie for 12 years. That is the med we had to discontinue (it stopped working, we also tried the Tegretol family of meds>XR, Carbitrol, Carbamezapine-generic, etc.) and started D. We then went on to Neurontin (mono), Keppra (added to Neurontin), Keppra (mono), Lamictal (added to Keppra) and now to Lamictal (mono). Katie has been on 7 different meds. 8 if you include the Phenobarb the first 2 months she was diagnosed...and I said no more of that one either. She was out to lunch and just plain crabby. That was ages 9-11 months old. My happy baby disappeared.

Good luck as you try to make the best decision for Gage. Remember, you can't base it solely on our or anyone elses bad experiences. It just didn't work for Katie.

All my best always,
Vicki
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Old 01-16-2005, 07:23 AM   #4
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Talking Re: looking for anything on depokote

hi there,
thanks for the info you guys. talk about two different experiences huh. no Julie gage has never had any type of grand mal seizures. only the absence seizures. he started out with horrible temper tantrums, and blinking, mouth twitching, night terrors, etc. and as he adjusted tot eh zarontin they slowly went away. things like the TV and what not never bothered him. it was an all day, any time thing. That's why when he started doing it with the TV i knew something wasn't right. It was never that pronounced with one perticular thing.

i have been doing a little research on the depakote, and what im reading is a little scary. and trust me yours and Vicky's post didn't help. lol. i guess we will have to just wait and see what the EEG says. i now the one thing that did scare me a bit was the aggressiveness that some of the things stated. he has that now and i really don't want to think what would happen if that was one of his side affects. and he is doing really well in school now, i would hate for him to have problems. did it mess with Patrick's learning ability at all as far as school was concerned. when Patrick went from the absence seizures to a grand mal, was there any sign that he would get those too, or did they just happen out of the blue?

Good luck with the sleep deprived EEG. I remember when we had gage's first one. we were walking around Walmart at 3 in the morning. That was the first one that told us about the seizures in the first place. At least he is a little older that gage was. Might be easier on him.

maybe ill just have to stand my ground with this neuro. it blows having to put my kids through all of this, and what may come down the road. it stinks now. here he was having breakthroughs and then he comes down with he flu yesterday and throwing up everywhere, so i cant give him his meds till he gets better at keeping things down. gosh, drinks were coming back up in a matter of seconds. Life is but a roller coaster huh?
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jennifer

 
Old 01-16-2005, 02:42 PM   #5
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buliem HB User
Re: looking for anything on depokote

Yeah depakote scares me too but what can you do? I had no idea Patrick would start having grand-mals but I think the neuro assumed he would eventually. At our first visit he told us to call 911 after his first grand-mal, as if it was a given that he'd have one.

I have noticed a change in Pat's learning since he started the depakote. He isn't as quick to grasp things and he forgets how to do things he already knows. Like remembering to borrow when subtracting. He's very inconsistent in his school work and has an awful time with multi step word problems. He says they make his brain hurt trying to force himself to understand them. The neuro says it's the seizures not the depakote but I know my son and I'm sure its a combo of both. All AED's slow down brain function. All I have to tell you is to watch Gage closely. Not everyone needs a big dose of it to get control of seizures. My sister in law has absence and had at least one grand mal as a teen and she takes only 250 mgs a day. She's 41 and weighs around 175 lbs I'd guess. Patrick is 10 and weighs 109 and is on 1500 mgs a day. Epilepsy sure is a frustrating illness. If his blood levels are over 150 and the EEG still shows seizure activity we'll have to add another drug. YUCK!

Patrick is moody to begin with so I think the depakote might help a little with that. It's also used as a mood stabilizer for people with bi-polar. He was having major melt downs (probably from the seizures) before he went on it. I thought it was a preteen thing. Of course we had to wait three months to get him into see the neuro and we have a PPO. I can't help but think that if he had been placed on something sooner it wouldn't have progressed as far. Oh well seems doctors are so overbooked these days. I emailed the neuro on Friday afternoon and he replied at 10:20 at night. Now that's dedication! Even if it was only a sentence fragment as usual. King of bedside manner he's not.

Lack of sleep or irregular sleep seem to trigger them for Pat as does sleeping in a hot or too stuffy of a room, especially if he's congested. He's only had the grand mals in the morning always between 7 and 8am. Anyway good luck and I'll keep you all posted after I find out the results of the EEG. Keep us posted about Gage.

 
Old 01-26-2005, 08:39 PM   #6
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Re: looking for anything on depokote

This is all so interesting. Jake's new Neuro just switched him from Lamictal to Depakote. So far so good. Lamictal stopped the Tonic but not all of the Absence Seizures. He was also haveing a lot of tics. Facial mostly but some vocal. I haven't found a Neuro yet to say that they were caused by the Lamictal, but they even list it as a side effect on their own web site. To me he seems less agressive on this than the Lamictal, but it is not in his nature to be aggessive. He just started that behavior while on Lamictal. Right now it just seems like we have our old sweet Jake back. By the way, he is 8 and was only diagnosed in May of last year.

Good luck.

Wendy

 
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