Bipolar Medication

[2pearl]

oh well, they just called and he doesn't qualify because of his seizures.

Thanks for the good advice though Ohmama.

[ohmama]

Sorry to hear that Pearl. How's your kiddo doing now?

[2pearl]

He's doing the same. I was really bummed he didn't get into the study. It would have been so great to have such thorough testing. I'm troubled by some cognitive problems he's having that I think are caused by the Abilify. My reason for switching Dr's is this; yes, the doc we have now got him stable. But she doesn't think he needs to be evaluated. She doesn't share my concerns about side effects and regular blood level testing. He would have never have even had his depakote levels checked had I not suggested it.
I just feel like we've reached the end of the road with this Doc and I think we could go further.

How about your guy? Have you started the lithium yet?

[ohmama]

Pearl,
I know what you mean about the psych not being concerned with these important things. I just make it a point to tell our psych what I want and he writes the Rx for blood draws and the medication I request. I've had to learn how to read the lab tests myself as I don't want to wait and hope the Dr. gets it right. I don't think it should be that way but it seems like that's how they all are. If I wasn't aware of what the particular meds do and knowing we need required lab work I would hate to think where we would be now with stability. The only exception that I found is the psych we saw at the Amen Clinic. He was wonderful and really took care of everything. Too bad it's a 7 hour drive and not covered by my insurance to see him.

That's why I've become an information junkie and have to spend hours everyday researching. It consumes me and I sometimes resent that the psych isn't handling it all. We really have to be partners with them. Once I had a psych tell me when she couldn't answer my questions, "You're way ahead of me with this, why don't you just tell me what you want and I'll write the Rx for it?" I wanted to say, sure, and lets split your fee. I'm a control freak though so I like taking care of things and knowing what is happening first hand as well as taking an active part in it.

As far as the clinical studies go, check out the bpkids site. Once you are on the message board page there's a column on the left with "Research and Clinical Trials". Click on that and see if there are any studies being done you can apply for.

My boy is doing ok now. I know what you mean about the cognitive dulling from the antipsychotics, I'm seeing that too and have decided to cut back a little on the Seroquel. I can always give him a dose PRN if necessary and I'd rather do that.
Another thing I've noticed is that if I give him the afternoon dose after 2 PM, he has horrible dreams. I'm giving the smaller dose at 1 PM now and it's better. The psych said bad dreams on a regular nightly basis means he is having RAM backlash and not going through the sleep cycles properly. That can also be a side effect of the antipsychotics.

We will be starting on the Lithium next week. I had to request the necessary thyroid test or he never would have gotten it! It's a small dose since he is already taking the Depakote and Seroquel. I'm going to inquire on the bpkids board about the Lithium from those parents who are giving it. What would we ever do without the computer frontclap* .

[2pearl]

good luck with the lithium. I'll be keeping my fingers crossed for you.

[ohmama]

Thanks Pearl, I gave him the first dose last night, 300mg . Will see how it goes.

[mellowed]

We use Lithium, Trileptal, Zyprexa, Topamax and my child can also use Ritalin. This was only given after stable and remaining that way for at least 6 months. My child has not gone unstable from the stim use, HOWEVER it is NOT for EVERYONE. In particular a child that is NOT STABLE.

[ohmama]

Thank you for posting your meds. Have you had any side effects with any of these? How long did it take you to find the right combination?

I know using a stim is difficult. What is the dx, is it bp and comorbid adhd?

Any Lithium advice?

[2pearl]

ohmama, how's the lithium going? Is it too soon to tell?

[ohmama]

Pearl,
It's been 8 days now. I just give 300mg once a day at bedtime (not the Rx dose of 300mg twice a day) because I'm nervous about the famous possible side effects of hand tremor and wetting the bed. So far so good, no side effects and I have noticed a slight improvement. I'm going low and slow with the dose. I will probably increase it next week to the full 600mg but I want to make sure he can at least handle the 300mg before I do that. Even 600mg a day is a low dose but it all depends on how fast or slow he metabolizes it. We are not looking for a particular blood level to target with this med, hence the low dose. Rather, it is to see if there are noticeable behavioral results. Even so, I'm going to request a blood level be taken for safety reasons.

We will be seeing the psych March 8th (in two weeks) and I want to discuss the base thyroid test he took before starting the Lithium that came back low, and get another one to compare it with after he's been on the Lithium for a while. Lithium can also mess up the thyroid.

I'm fortunate that I can play around with the dose because he is fairly stable at this time.... I always hold my breath when I say that, LOL. The real power med has been the Seroquel and I have that standing by for PRN use.

[ohmama]

Yesterday we started on the 300mg twice a day. I found out that it's better to take the Lithium with food to prevent stomach upset. Also, something interesting I learned from Martha (bpkids site) is that the Lithium dose is affected by the altitude where you live. Higher altitudes require lower doses, and vice versa. Many doctors don't know this!

[2pearl]

I think we have some big trouble here. About two weeks ago my Brother in law was staying with us. He hasn't seen ds in a while and commented to me that he seems so "drugged" this was without know that he is on meds. Anyway, that comment really, really bothered me because it is true. Ds isnt the same boy he was one year ago in both the good ways and the bad.
Anyway, I decided to reduce his depakote and abilify just a bit. I know, I know I should have talked to the Dr first but I didn't.
So I reduced the depokate by 250mg and the abilify by 2.5mg. The results were mixed. He did seem less out of it but at the same time some of his old ways returned. So after one week I put him back at his original doses. And now... he is a mess. He is emotional and I think a bit depressed. I haven't seen him like this in a long time. To make matters even worse we are in between psychs. He has an appointment on the 11th with a new psych and I just canceled our certification with the other psych so I'm not sure if I can call her.
I wish I had just waited until we saw the new psych. I don't know if this is a temporary re-adjustment or if I've really knocked him out of whack. After so many months of peace it is so horrifying to face this darkness again.

[ohmama]

Pearl,
You need to know his Depakote blood level. When is the last time you had a Depakote blood level drawn? Do you have a standing order at the lab (standing orders are good for 6 months) to have this test done? Please request a standing order from your psych and have him ok the lab sending you a copy of the results. This way you can know the level and check it yourself to see where he is at in the therapeutic range. It will make it possible for you to keep an eye on how the med is working in his system (too high a dose or too low, also how he is metabolizing it).

If you don't know the answer to the blood level and it's been a while since the test then you will need to call the lab and get the reading or get another draw to find this out. He shouldn't look drugged if the dose is appropriate. If the lab won't talk to you then you can call your last psych and request the lab reports. You are entitled to his medical records anyway so it shouldn't be a fight to get this.

It takes a while (several days) before the effects of lowering the Depakote let you see substantial behavior changes. Since you brought back the original dose it will also take time for any improvement to be apparent. I'm thinking that if you saw immediate results in making these changes then it was probably due to the Abilify decrease. I can't advise you on this med since our antipsychotic is Seroquel not Abilify. I know if I miss a dose of the Seroquel I see immediate results, never good though.

The drugged look you describe is suspicious of Abilify in my opinion and it could mean that you will want to discuss using a different antipsychotic in its place. Sometimes it is not just a matter of lowering the dose but it is necessary to switch meds when this happens. It could also mean that the Depakote was too high. That's why you will want to know the blood level.

You could try posting at the bpkids site as some of those parents could be pharmacists from everything they have been through.

[2pearl]

ohmama, we do have a standing order at the lab but the results will be sent to the old psych.I'm
going to wait til we see the new doc on tuesday because maybe she'll have her set of tests she wants to do and why put him through it twice?
Ds has been on a waiting list at Children's Memorial for several months for the same doc that was doing the bp study we didn't qualify for. She's not taking long term patients but she is doing evaluations and making recommendations. We see her 3 times over the next 3 weeks and then I'll either switch to a doc she recommends or return to the old one.
Today he is fine so I think maybe your right that it was just taking a few days for the depakote to kick back in.
One time DH gave DS 2.5 mg of abilify instead of 7.5. I could not believe how badly it affected him. It was three days before he was back on track.
Thanks for your reply. I hope is well with you and your son.

[ohmama]

I'm glad to hear he is stabilizing. That's one of the most beautiful words in the English language.

We are at 1200mg Lithium (starting tonight) and keeping the Seroquel high (now between 600 - 800mg) till I see the results of that increase. It seems that when puberty hits there is a major need to examine meds as well as dose to make necessary changes.

I hope your new psych will be the best one you've ever had. It's too difficult to keep changing if you know what I mean.

[2pearl]

I do know what you mean. I'm very anxious to get another opinion though The challenge will be presenting his history as clearly as possible. I'm actually thinking of making a time line chart of different Dr's, meds and side effects. I can't tell his story in just one hour!
Have you ever had to do anything like this?

[2pearl]

oops, I posted the same message twice and when I tried to delete the second one it didn't work.

[ohmama]

I do keep such records and have a condensed version to give any new psych or other doctor we may encounter. Even when on a visit with the psych we have had for over a year (visits are now every few months) I found it necessary to start the conversation by referring to the current dx and dose of meds we are using. For some reason, and this makes me crazy, they never look at charts to refresh themselves on anything. I also keep a copy of the lab work so I can refer to it when necessary.

Between visits, I never call when there is a problem. I always fax a brief letter and follow up with a phone call for an answer to the situation. My doctor now faxes his answer back to me. This way I have a written record of everything and no mistakes are made. Here's an example of a recent letter...

March 30,2006 ...................... ...................Attn: Dr. So & So
From: Me ...................................................Regarding: DS name
Fax: my fax.................................................Can I increase Dose?
Phone: my phone

Dr. So & So,
Fireboy is currently taking 1,000mg Depakote (blood level is 77), 600mg Seroquel, and since 2-14-06, Lithium (blood level is 0.7). His current dose is now at 900mg. He is having manic, unstable behavior that is becoming violent so I have had to use an additional 100 to 200mg Seroquel PRN on several occasions.

Lithium has been a wonderful med for three other bipolar family members and I am hopeful that adding this will be good for him also. His brother who weighs only three lbs more than him (123lbs) is currently taking 1500mg and is stable without side effects at a blood level of 1.2. He also takes Seroquel by the way.

With your permission I would like to increase Fireboys Lithium dose from the current 900mg to 1200mg and do another blood draw next week to monitor the level and also to check the thyroid at that time. Of course I will be watching for visible side effects and call you immediately if necessary. I am not reaching for a high blood level but can say for certain that this level and dose are not showing any results. Is there room to go up on this med?

Along with this letter I am including his recent (3-27-06) blood tests showing the levels and thyroid results. I also wonder if the thyroid results are of concern because of the flag showing low & high?

Our next appointment with you is May 4th.

Sincerely,
Me, Fireboys mom

[2pearl]

I think I'm going try faxing. I'm still waiting for a response from the Dr.

Thanks for posting your letter. I'm definately going to follow your lead!

[ohmama]

Hope it works. You never really know if the person answering the phone is giving the doctor the complete message so I found it better to make it idiot proof by writing it down for him in a fax. There's just too much at risk if they don't get the message right, kwim?

I think they respond better to the written word, it's not so easily dismissed if they see you are keeping a written record.

[ohmama]

I went to my email this morning and was pleasantly surprised to find my regular "mcman newsletter" had arrived. It was outstanding as usual. I just don't know why I haven't mentioned it here before. Maybe because of the roller-coaster I live on wouldn't stop long enough? Well here it is for all who are interested in Bipolar disorder (and depression too). You can sign up for the free newsletter and check out the mcman blog while you are at it.....

www.mcmanweb.com/newsletter1.htm

Or the Blog....
blogs.healthcentral.com/bipolar/johns-bipolar-stories

[Gillian]

We are thinking of going to Lithium now. Someone told us he will have to be hospitalized to start it. Is that right? His depakote and seroquel has just been upped again. He is not doing well at all. The upping of the d and s has helped a little but not really enough. He is becoming increasingly impossible to live with frankly.

[swmom]

Sorry to hear that , Gillian. Wouldn't it be nice occasionally to reach some kind of plateau?

[dadhere]

Hi Gillian- Lithium wasn't a problem when starting it with our 4yo- no hospital involved. We switched out the depakote for the lithium. Both require monitoring with blood tests, so probably baseline tests are already done. Thyroid- TSH - level should be established if one isn't already. Lithium has been very successful here, blood levels about 0.9. We could tell when it dropped lower. As far as seroquel goes, it took 800 mg. and about 4 months to see positive results. Darryl

[Gillian]

swmom - yes it would be nice to reach a plateau. We never seem to though.

dadhere - Thank you for that info. Yes, blood tests are already the norm for us so that should not be a problem.

We are grasping at straws at this point.

[Beverly]

Sorry to hear things still haven't settled down.

[ohmama]

Gillian,
The Lithium is working for us here (1200mg). My sisters boy, who is 14 yrs old, is also having success on it (1500mg). This is a boy who she thought would never be stable. He would abuse himself and now has scars from hitting himself with a belt buckle. When he was unstable he would run through the house laughing and whip himself with the belt buckle, he was so far gone that he said that it felt good. This is not uncommon when they are unstable, they also cut. I read that it releases endorphins when they are in that state. Now he is doing very well because of the Lithium. This poor boy was destined for a permanent psych ward. You should see him now! Lithium saved his life. He also takes 600mg Seroquel.

It was not instant though, took a while to get it up to therapeutic levels. From what I understand, using Seroquel, the therapeutic dose level is somewhere around 400mg. I also noticed that once we reached that level with slow increases it made a big difference. The treatment guidelines suggest it may be necessary to use two mood stabilizers along with an antipsychotic. In our case that is what it took to stabilize my boy.

What is your current dose of Seroquel now?

We are also using 1000mg Depakote and 600mg Seroquel besides the Lithium. I don't see why they would say adding Lithium requires hospitalization??

[Gillian]

He is now on 3OOmg Seroquel and 1250mg Depakote. Someone said about the hospitalization because of all the blood tests they do at the beginning.

Side note - he is now getting headaches (I'm guessing from the Seroquel) which, of course, are putting him in a p'd off mood.

[ohmama]

Gillian,
I can't imagine hospitalizing because of doing a base line thyroid and kidney function blood test. That is the blood work that is necessary to start Lithium. After several days (5 to 7) another test is taken to find out the Lithium blood level. This is easily done by any lab and does not require professional observation. Usually hospitalization is recommended only for observation when the child is so unstable he is a threat to himself or someone else. I've never heard of it being necessary to do lab work in starting any med?? A child is more likely to be their true self at home than in a hospital setting. Because you know him best, you will be able to tell when something is really working. Kids are famous for putting on an act for strangers or holding back because they want to be released from custody, then once they are home it all goes south.

The headaches could be due to the Depakote dose, and therefore the blood level of this med in his system being too high or the increase being given too rapidly. What is his Depakote blood level? That will tell you right away if you need to cut back or go slower on any dose increase. Please find out what his level is. If it is too high, it could be toxic.

Seroquel should also be started low and slow to avoid side effects. Most find it to be much faster acting than the Depakote when the goal is to stabilize and avoid psychotic behavior. You can get more information on the bpkids site about these two meds. The resource section over there has abundant information on all of this with links to further information.

Is Depakote and Seroquel the only meds he is on now? Has anything been recently removed that could be causing withdrawal symptoms that could be contributing to the headaches? Also important is for him to drink enough water during the day.

One more thing I forgot to mention is that it is far better to increase one med at a time so you can better judge what med is working or possibly causing the problem.

[Gillian]

The headaches seem to of ended now. I think the new dose is helping a little but then again after a pretty good day, yesterday, :-Xhe went into serious meltdown at bedtime.