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Post by ohmama on Sept 22, 2004 13:57:07 GMT -5
I'm not sure if this is a side effect or what. I have a call in to the doctor but in the mean time I would like someones feedback on what could be wrong.
Fireboy is VERY hyper, full of anxiety and very emotional. The school called and they don't know what to do with him, it's the same thing at home, he's completely insane. He stopped taking the Depakote ER, 1000mg after being on it for approx. 6 months. He had no med what so ever for a total of 21 days. His behavior has been getting steadly very bad since stopping the med.
We saw a new doctor and he put him back on the Depakote because it was working so well originally. The old doctor stopped it because of elevated liver enzymes but this doctor thinks the enzymes were not that elevated and he could go back on it safely, we will just keep an eye on it with blood tests.
For 7 days now he has been back on Depakote only a lower dose, 500mg. I'm still waiting for things to improve and it seems his behavior is worse than ever! Like he has no med in his system or like the 500mg is agitating him or just not enough?
I know it takes time for the med to get in his system again but I wonder if this is an adverse reaction??
I just called the pharmacist and he thinks it is possible that he is under medicated and I should just give it more time to take effect, like another week. He couldn't say more than that and referred me to the doctor who hasn't called me back yet!!
Is anyone familiar with this med that could give me some advice before I go nuts? How do I tell if it is a bad reaction or he needs a stronger dose or I should just wait?
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lisle
Full Member
Posts: 142
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Post by lisle on Sept 22, 2004 15:03:59 GMT -5
Hi, Oh Mama: Sorry to hear this. We are in a similar mess with no meds. Suspension today, for instance and total oppositionality and anxiety here. I remember that Pfeiffer talked to me about using inositol. Did you ever try that? It's supposed to be calming. Naturally, it made our son hyyperrrrrrr! So much for that. They prescribed 750 mg. up to three times a day. I think my son reacts worse to too low a dose of meds than to no meds, but we haven't tried Depakote. Did you consider lithium? There is an interesting study going on at NIMH on mood dysregulation that might interest you. Look on bpkids.org if you haven't/ Ellen Liebenluft is the dr. running it--there are two different ones by her, and the one in residence may be the better one for you. But remember it is research, not there just to benefit your kid. They do not leave the kids unstable, though and monitor them very closely while giving them one on one teaching and also therapy. So I MIGHT CONSIDER IT. lisle
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Post by ohmama on Sept 22, 2004 16:29:17 GMT -5
Thanks lisle, We can't use lithium because of the hand tremors he is having that would make it worse and it's pretty bad now. We have a neuro appmt in Nov to see what's going on with it.
Doctor hasn't called yet but I expect he will this afternoon. Now that I have calmed down a little I think the pharmacist was right, I need to give it more time to get in his system. I remember how long it took to stabilize him before. The waiting was awful, this med is soooo slow!
He is having a very emotional time at school so I've decided to keep him home till Monday, that's only 4 days but it will give some more time toward him reaching a level that could make a difference. I'm sure the teachers will appreciate that!! Ha Ha, I'm going nuts here.
What is your treatment plan now? Why no meds? Or what are you doing besides pulling your hair out? It's got to get better, doesn't it?
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Post by Amsmom on Sept 23, 2004 6:31:38 GMT -5
ohmama, this depakote experience has been a real nightmare for you, i know. i think the pharmacist is calling it correctly also, it's just so d@mn hard waiting, isnt it? my ds8 is on 750 of depakote and it was no picnic getting him titrated up to the right dose. we saw his psychiatrist yesterday and i asked him about your experience with depakote and elevated liver enzymes. he said that it is not common for the enzymes to become elevated as quickly as your little guy's did, but that it can happen, unfortunately. he said that usually elevated enzymes are accompanied by stomach/abdominal pain or jaundice, but i dont think your fireboy had any symptoms, right? maybe (i hope) that does reflect that the enzymes were not as elevated as initially thought. i wish that stupid dr would call you back. that is so unacceptable when they take so long like that. my ds's first psych was REALLY bad about returning calls, but i feel really blessed with our current psych. he even returns calls on sundays!!! he is truly a blessing and a wonderful dr/person. Good luck, keep us posted.
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Post by ohmama on Sept 23, 2004 7:25:48 GMT -5
Amsmom, I'm so glad you have a good Doctor, but must I am secretly jealous! Thank you for asking him about fireboy. Maybe I should get his phone number from you? Ha Ha, can you tell I'm getting desperate? I think we have to become doctors ourselves!
The doctor did call back in the late afternoon. I don't know if you read the "sick to my stomach with fear" thread but it told you a little about this new Psych. He's really odd and I just don't know what to think about him. When he called I described the symptoms and he said it was probably a reaction and that I should take him off the Depakote and put him on Trileptal. Now, all he had to do was look at the chart and he could have seen that fireboy has taken Trileptal and it didn't work. So after I told him this he didn't know what to do.
I suggested that maybe the Depakote needed more time (it's only been a week) to get in his system? So, he said to give it another week. He would have said anything I wanted him to. I told him I will do some research so "we" can decide on another antiseizure med if the Depakote doesn't kick in.
Who's the doctor here? It's really stupid that we should have to go through his indecision and confusion and pay him for it! The pharmacist was more helpful.
I will wait a week and see what happens. Are you familiar with any other of the antiseizure meds?
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Post by Amsmom on Sept 23, 2004 20:47:00 GMT -5
>:(grrrrrr this new dr you are stuck with makes me so mad. i'm sure you've thought of this, but is there a reason you can't get another dr? i did read the other thread and this guy sounds worse than useless.practically falling asleep in your first visit and now depending on your suggestions as to what to try next. we have not used any of the other anti-seizures. is phenobarb used for bipolar? we did try tegretol,but i cant remember if that is anti-seizure or for blood pressure. it is hard to remember, there have been so many trials in the last 4 yrs. the tegretol didnt help though. i dont know how accurate the new dr is in telling you that the behaviors sound like side effects. If that's so, why didnt fire boy exhibit them the last time you were titrating up? i had already thought about telling you to come down to miami and meet dr hunter. he is AMAZING. He is not in my insurance plan, but i pay out of pocket b/c he is so fantastic. (and being a single mom with no child support, paying out of pocket is really hard) i am wishing you tons of luck. please keep us posted.
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Post by ohmama on Sept 23, 2004 22:37:07 GMT -5
Amsmom, Thanks for the encouragement. As bad as this new doctor is, I must admit, he is better than the last one. At least this one will do what I want. The other one was so mean and nasty he almost made me cry a few times. He didn't want to give a blood test for liver function!! Can you imagine that? It is standard when taking Depakote. I insisted on it and he finally gave in. So, I'm glad to be rid of him.
I have a great book "Straight Talk About Psychiatric Medication For Kids" by Dr. Wilens that I will do some research with to find a med. I'm sure it will be ok soon.
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Post by ohmama on Sept 26, 2004 9:40:46 GMT -5
To Amsmom or anyone who is familiar with extended release (ER) medications, There is the regular Depakote (also known as delayed release) and then there is Depakote ER (extended release). Can I give a regular tablet of Depakote at the same time I give the Depakote ER? I want to give a total of 750mg and have 500mg of the ER and 250mg of the regular. Is there any reason not to combine them? I checked the www.depakote.com website and the only thing they said about the two is that one was more bioavailable than the other. Whatever that means?? What do you think?
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Post by Amsmom on Sept 26, 2004 19:07:26 GMT -5
Since I havent had that experience before, I would say, call the pharmacist. Do you give the 250 and 500 at the same time? Sorry I cant be more help. Please let me know what you find out.
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Post by ohmama on Sept 26, 2004 22:16:59 GMT -5
I give them at different times, 500mg of the ER in the morning and 250mg of the regular in the evening before bed time. The pharmacist said if that's all I had to work with then that's the way to give it.
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Post by Amsmom on Sept 27, 2004 6:23:43 GMT -5
i give it the other way around, 250mg am, 500mg pm, which, of course, you can do it either way--- 6 of one, half a dozen of the other. i would THINK that it doesnt matter about the er and regular depakote.
Re: "The pharmacist said if that's all I had to work with then that's the way to give it. " Was that in response to the er vs regular question or giving it 250 am and 500 pm?
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Post by ohmama on Sept 27, 2004 9:06:04 GMT -5
Yes, she was talking about the way the med was released in his system, delayed release and extended release. It would be better to give it at different times because of this.
Otherwise, if you are working with the same pill it would be more consistant and you could (and I was before) give all 750mg at one time.
What is your sons Depakote blood level at 750mg? Fireboy had a level of only 62. With 1000mg it went up to 66.
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Post by Amsmom on Sept 27, 2004 18:51:35 GMT -5
My ds's depakote level is 82 with 750 mg. That is so frustrating that your fireboy is not getting up to the therapeutic level.
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Post by ohmama on Oct 11, 2004 21:07:07 GMT -5
Good news!! The Depakote is working now!! Can you see, I'm doing the happy dance? I just got the results of the blood work and his liver is better than ever. Another thing, his Depakote level is at 76!! This is right where I want it. I'm so excited with this. I wonder if it was a result of combining the two different types of Depakote and giving them at different times? It just seems odd that now we have a higher blood level of 76 at only 750mg and before at 1000mg the level was only 66 and liver enzymes elevated??
Isn't stable a wonderful word?
The next step is to find something for his anxiety and adhd. Does it ever end?
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Post by hopeful on Oct 12, 2004 18:11:51 GMT -5
Ohmama:
Your news has literally made my day. I am so happy for you and your son. It must be a huge relief, and yes, I do see you dancin'.
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