Bipolar Medication

[Beverly]

I would second what 2 pearl has said here. If no symptoms of a mood disorder existed prior to the Strattera, I would ask to start with discontinuing Strattera rather than adding meds. My son, like hers, was "kindled" by taking Strattera. Strattera is an anti-depressant.

2pearl, we are seeing the nurse practitioner tonight and the therapist already called her and advised her that my ds's mood is unstable and he needs to go back on Depakote. I saw a postive result within 10 days of him starting the Depakote in 2004 so I am hoping things get better. I am tired of his moods running this house.

[ohmama]

Tickety,
Strattera is not a med used in a treatment plan for a diagnosis of Schizophrenia as I'm sure you know. With comorbid conditions such as adhd, just as with bipolar, the most predominant disorder must be treated first. To do any less would be to play medication roulette with our child's brain. You may find that when it is treated correctly many of the comorbid conditions will not be so obvious. Here is a site that gives a good description and info on Schizophrenia....

www.schizophrenia.com/family/sz.overview.htm

An absolute must read is "Straight Talk about Psychiatric Medications for Kids, REVISED EDITION (2004)". This will help you with understanding the proper meds to use and it also has a lot of information about Schizophrenia.

[tickety]

We including the Dr are not exactly sure what is wrong with him. He is my step son and I’ve always known that there was something wrong with him. I think his dad did too but being a single dad for so long made excuses for his behavior rather then try to help him. Even the Dr seems to be baffled by his behavior even with all the reports she looked at and her own observation of him. She isn’t exactly sure that he is schizophrenic, she thought that he excibted some of the behaviors, her second thought was bi-polar especially because the strong family history on his moms side.
Thanks for the link if gave me some information but after reading through it; it appears that he might not be schizophrenicbut possibly bi-polar. I guess I’ll have to wait and see what the Dr says tomorrow.

[ohmama]

Tickety,
What is the behavior you mention that the doctor is baffled by? Is the doctor a board certified child psychiatrist?

[tickety]

Yes the Dr. is board certified and has been practicing for 20 years or more.
He was diagnosed with ADHD at 8 years old and put on Strattera which we think might not be the right med for him.
It seems that he has several different symptoms. Here is the list that we have observed: He is goofy some days and sad others. He has been noted by several people to be very immature for his age. He hoards and collects food, trash and anything else he can get his hands on. He appears to have some type of attention seeking personality if there is such a diagnosis. He frequently talks to himself even stands in front of the mirror and talks to himself. He doses alright in school at times although he is lacking in some subjects. We have a 3 year eval with the school this month to address those concerns. He does very poorly socially; doesn’t have any friends at times and at other time makes friends with kids who are always in trouble. He Express to others that life with us isn’t fair, always feels cheated and slided. My husband, I and both of the families have tried to make everything we do for the 3 boys as even as possible but he always sees that we treat and provide the others more than him. I think that is why we and the Dr. are baffled by his bizarre and strange behavior. These are the main things that see on a daily basis. I think this is why it so hard to diagnois him it appers that he has syntoms of several diffrent disorders.

[Beverly]

tickety, much of what you listed are ADHD behaviors-immaturity (usually about 2 years behind), social issues (usually due to misreading or ignoring non-verbal cues), silly behavior, and attention seeking behavior (class clown). The hoarding and sadness are not ADHD behaviors. Did your doc talk to you about the 2 black box warnings that came out on Strattera during 2005?

2pearl, the nurse practitioner wouldn't change his meds. She ordered blood work. I've been through this before-blood sugar fine, thyroid levels fine...he needs Depakote! I am worn out.

[ohmama]

Tickety,
I don't see any reason to suspect Schizophrenia or even bipolar. If I remember correctly, your son just turned 10 yrs old? Much of this behavior is not unusual for a child of that age. I would wonder if some the problems could also be a result of taking the wrong medication? I know you mentioned mood swings at one time, possibly due to the Strattera dose he was on.

Have you considered family counseling for him? The family could also benefit from this to learn suggestions for the best way to make things run smoothly. An IEP, if he doesn't already have one could help a great deal with issues at school. It would not hurt to get another psych to look at him and give a more substantial opinion as to what diagnosis would fit better. Based on what you say I would have to agree with Beverly that if anything he may have add/adhd. I just don't see evidence of bipolar or schizophrenia at all.

You may also find dietary changes and the addition of Omega 3 fatty acids amazing for improvement in behavior. These fatty acids have been one of the most outstanding factors (along with medication) in our treatment program. Please check out the Complementary & Alternative Treatment area of this forum for helpful information on where to start with this.

Here's the link for the Strattera Warning Beverly mentioned.....

www.fda.gov/medwatch/safety/2005/safety05.htm#Strattera

[ohmama]

Beverly,
If your son is unstable I don't understand why the nurse would not change the meds? A mood stabilizer sounds like a logical solution. What do they hope to find out with blood work?? Can you ask to talk with the doctor about this? It doesn't sound like the nurse is giving any attention to the facts.

Can a nurse practitioner legally prescribe medication in the first place? I don't think so, could this could be why she is against it?

[Beverly]

ohmama, Nurse Practitioners can prescribe meds in NJ. We saw her because we switched docs after ds's hospitalization but cannot see the new one until 1/26. The nurse practitioner was set up by his Mental Health Care Manager. She is trying to rule out things that have already been ruled out before. The main problem is that he reacted badly to Strattera, the hospital made the assumption that he did not need a mood stabilizer because they wrote off the behavior to him being on Zoloft. The anger and agression can be attributed to both mania or depression depending on your leanings. The most obvious behaviors to outsiders are the depression-based ones. This then leads her to an anti-depressant.....and though the Strattera can be pinpointed as the initial trigger almost 2 years ago, he was on both Strattera and Depakote when Zoloft was added so though I saw a positive change when Depakote was added, I saw no change when Zoloft was added....and so it goes around and around. This is why I didn't want to change psych's in the first place...you basically start from scratch.

[2pearl]

I've been meaning to bring this up for a while and I'm just now getting to it.
A month or so ago I read this article in the waiting room at the pdoc office.
The article is about the new treatment guidelines for BP children. This statement is included and is issued by a group of leading researches in child psychiatry.

"The researchers believe that the basic goals of maintenance treatment include prevention of relapse and recurrence; reduction of subthreshold symptoms, suicide risks, affective cycling, and mood instability; reduction of vocational and social morbidity; and promotion of wellness. They recommended that medication tapering or discontinuation be considered if the patient has achieved remission for a minimum of 12 to 24 consecutive months. “For less severely ill patients or in patients for whom a diagnosis is less clear, a briefer treatment period may be indicated.” The researchers wrote, “The risk associated with a potential relapse should be compared with the risk associated with continued pharmacotherapy. "


Here is the link to the entire article
www.neuropsychiatryreviews.com/apr05/guidelinesbipolar.htm

Anyway, what got my attention is the recommondation to "taper or discontinue" medication after achieving remission for a minimum of 12-24 consecutive months. I never considered that this would ever be a possibilty. Does this mean that it can "go away" after this period of time? Is it assumed that medication will have to be continued at some later point and that the only purpose of discontinuing the meds would be because of the risk of continued pharmacotherapy?
I guess I just want to discuss this and would be interested
in hearing how others interpret this article and in particular this statement.

[2pearl]

that link didn't work so here it is again

www.neuropsychiatryreviews.com/apr05/guidelinesbipolar.html

[ohmama]

Pearl,
The idea of being able to stop medication at some point for bipolar is not possible to the best of my knowledge since this disorder does not ever "go away" and there is no cure. It's very common for a bipolar person to think they are "cured" once their symptoms are under control and the cycling is less dramatic, with the right medication. This will often relate to the person not taking medication and will quickly bring about a relapse. This is my understanding.

Your quote was contained under the section "Comorbidity and Maintenance Treatment" and I believe was referring specifically to prevention of these cases of relapse and recurrence that were comorbid with bipolar and not of the actual bipolar itself. I will post this question with the source of the information at the bipolar kids site and get back to you with their explanation of that paragraph.

Thank you for bringing it to my attention. I think it was reckless of Colby Stong, the author of this article, to summarize the guidelines and take this out of context. The way it reads, anyone could interpret it to mean you could stop taking meds at some point. I have never heard any such thing and have in fact read just the opposite. Many papers bring out the danger in doing this.

I am also going to invite "Dad", who is one of our members, and a moderator on the bpkids site, who's knowledge I highly respect to give his comments on this.

[ohmama]

Pearl,
You read it right. I asked specifically about the paragraph in question. Here is the response from Martha Hellander at bpkids.org who was part of the committee on these bipolar treatment guidelines ......

"We had some lively discussions on this point. The operative words here are "consideration", "remission" and "minimum 12-24 months." Consideration means you revisit the subject - are these meds still the best evidence-based treatment for this patient at this time? Remission means no symptoms have been present during this period. Since a child could be diagnosed with bipolar according to DSM-IV if he or she had only one episode of mania, recovered quickly, had no further symptoms and was never suicidal or psychotic (this would be a tiny minority of children with this diagnosis, I'm sure), some experts felt that in such a case, it was prudent to "try" removing the medications.

Research has shown that many kids with BP do not achieve remission easily or if they do, it is not sustained for long periods, even with expert treatment (in other words, relapses are common). Also, having been suicidal, or having psychotic symptoms, are factors that weigh against discontinuing meds - this will include most children diagnosed with bipolar disorder. So, few would fall into this category to begin with, where consideration should even be given to discontinuing treatment.

The paragraph that follows the quote recommends (if it is to be attempted) tapering in a closely monitored environment at a time least likely to interfere with the child's functioning - and being ready to spot the emergence of new symptoms.

Most adolescents and young adults will want to go off their meds at some point, because they are loathe to accept the diagnosis, especially if they were diagnosed very young and have no memory of their experience prior to treatment. This is a reality that parents must prepare to face, and think about how to handle. Clearly it is preferable to try to discontinue (or reduce) meds under the close supervision of a doctor.

The group that wrote the guidelines could not reach consensus to recommend maintenance treatment indefinitely in all cases. They felt there needed to be room for individual differences and need for continued treatment. Since this was a consensus conference, it means the guidelines include only those things that the group reached consensus on. Individual experts may have written things differently. I believe the adult guidelines say maintenance treatment should be done for at least 18 months.

In the case of lithium, some experts taper for six months to a year. Hopefully there will be more details on how to do tapers in future editions of the guidelines.

The boy on the home page of this site, Ben Carlson, who is holding the turtle, killed himself (at 14) when a reduction of lithium was done (over his objection - he liked feeling well and attributed it to his lithium). He went into a depression and the psych tried to raise his levels to bring him up, but it was too late, and he got ahold of a gun (lived in a hunting community).

Martha Hellander
CABF Co-Founder"

(The boy Martha is refering to holding the turtle, Ben Carlson, is on the home page of . Don't look, it is too sad. He has a beautiful face that is full of life.

[2pearl]

Thanks ohmama, that clears it up a bit. In the case of my son though it has given me much food for thought. He seems to fall into the category (presuming he continues to be stable) of someone they would "recommond" tapering off meds.
Anyway, you'll be happy to know that I finally joined CABF this morning! I'm sure I'll "see" you over there.
Another quick question for you though, in the evenings right before bed time and also in the morning when he wakes up, DS is silly and impulsive. Nothing major, actually it's the way he used to be all the time. I still am a little stuck on what "mania" looks like. Could this be mania or is it more than likely just the ADHD since these are the times when concerta would not be in his system? I know Ive asked this before but what exactly does mania look like? I know this is hard to answer since it probably looks different in everyone but generally?
Thanks ohmama

[2pearl]

Oh, and I did look at the photo of Ben Carlson. It's what compelled me to join.

[ohmama]

Pearl,
It is hard to put it into words. I think once you see someone in a manic state you "get it". I will attempt to describe it as it appears in my boy and others I have seen who displayed this type of behavior...

Sometimes it looks like an elated form of happiness, but overdone so that it is noticeably inappropriate to a given situation. There are missing steps in logical thinking, extreme impulsiveness and distractability, reckless and dangerous behavior and/or poor judgment, flight of ideas, pacing and nervousness with fast talk almost like an anxiety attack but it doesn't go away. Have you ever seen a speed freak? They display manic symptoms.

Then, it also gets real ugly and you have rages (like an animal), tantrums, violence with no provocation, self cutting, aggression, decreased need for sleep, pressured speech, speaking at a rapid pace, often loudly and almost constantly (motormouth), hysterical laughing one minute and crying the next for no reason, jumping out of a moving car, hearing voices and having hallucinations are common when in this state, need I say more?

These are extreme examples but mania is extreme behavior. Sometimes these things happen like a chain reaction from stress. Bp kids cannot take stress at all. Even over stimulation in the form of computer games or being in a crowd of people with noise can trigger a manic episode. You cannot yell at a bp child. They cannot take it, they don't bounce back. There is not always a trigger for this behavior either, sometimes it is just out of the blue.

I am really glad I will be seeing you over at the bp site ! I have the same name (ohmama) there. Those parents can tell you more about this so don't be shy about posting.

[dadhere]

2pearl- Over the past 6 months I've played with adjusting both the lithium and the focalin- Even after 3 years it's still hard to pinpoint some of it. Ohmama described the mania well- it's the intensity of the actions. The adhd symptoms are a more matter of fact, casual level by comparison. I see the morning pre-dose symptoms -there isn't a chair with tight joints at the table, and it takes a lot of coaching to get him to school, but he does it compliantly. As well, we see the wear off. Fortunately, we don't get a rebound effect, which can happen when stims wear off. I'm not so sure the 'silliness' isn't indicating something more tho. I would take a closer look at the meds, the time they are given. Chart that along with the times and what symptoms you see. You can discuss with the pdoc if they coincide with any peaks or troughs in his med levels. Do they occur at bedtime after giving them, is there a night dose that could have peaked before morning or conversely peaking? Any repititious targeting of receptors? Just looking at some possible variables. I know Levi had a hard time at about 11 am- We had a peak with his risperdal, a trough with the focalin- We decided to switch from regular focalin to the XR form. Apparently the trough is moderated by the delivery because it did take care of the problem. Darryl

[2pearl]

thanks for the descriptions. dadhere, when you mention that you see the morning pre-dose symptoms, are you referring to ADHD or BP?

[dadhere]

It starts with a slow wake-up (bp), but the main component in the morning is the adhd- as he wakes up, the motor control just isn't there, nor the focus. You can see it improve as the focalin is absorbed. Trying to finish a homework project in the morning is just about impossible. Without the focalin he also has a hard time being in any early period group situations at school. I know this is linked somewhere here www.bipolarchild.com/newsletters/0402.html I think there may be some helpful tips in them for you.

[2pearl]

I wasn't sure where to post this but thought this would be the place to start.
I'm concerned about hand tremors that my son experiences with abilify. They only occur when he is not on the concerta. Ohmama, I think I saw a thread you posted about this on the cabf site but I couldn't find the beginning of it (I'm still feeling my way around there). Does your son have this also or am mistaking you with someone else?
Also, and I haven't researched this yet, but my son has developed a very sensitive gag reflex. Sometimes in the mornings when he's eating he has some problems gagging. Also, if while he's eating someone says something even mildly gross he will often gag to the point of vomiting. I blew my nose today while he was eating lunch and it made him gag.

[ohmama]

Pearl,
My son does have hand tremors. I know it's not from the meds because he had them before meds. Also, several of our family members have these tremors. According to the Neurologist, this can be an inherited thing and is not important. I don't agree that it's not important so she gave us a medication (Neurontin, aka Gabapentin, and another one I can't remember the name of, started with the letter P) to help with this. It was worse than having nothing, made him manic and almost psychotic and did nothing for the tremor. Now, we just live with the tremor.

I know the meds can make it worse, Lithium is famous for the side effect of hand tremors as are some others. I don't know much about Abilify but it could be that this, and the gag may be side effects. Have you checked out www.abilify.com to see listed side effects? What does your neurologist say about this? You may try posting on the bpkids site and asking about it. It's interesting that it doesn't happen on the Concerta.

[2pearl]

Yes, I guess I need to check on both of these things a bit further with the Drs. I did post it at the Bpkids site.
I didn't want to throw this next question out yet over there but I did want to run it by you. I keep reading about the EMpower and truehope stuff over there. I went to the Truehope site and looked at it but still feel confused. I'm wondering how this measures up to Pfeiffer? To me it seems that Pfeiffer might be more complete since they test your child first before prescribing the supplements. Does Empower claim some secret ingredient or something? Whats your take on this?

[ohmama]

Empower is a one size fits all as far as I can see. I don't recall any specific testing for shortages or deficiencies in the person. There are so many threads on it at the bpkids site by users of the supplement that it's sort of taken over. I've never heard anyone say it doesn't work even though there is always the possibility that you may hear, "It didn't work for my child but it may work for yours since everyone is different". As we all know, all meds don't work for all kids either.

Sometimes it is used along with other supplements to enhance it's performance, used with a small amount of medication, or just used alone. At one time all discussion on it was banned and the ones who posted about it were not allowed on the forum. That has changed now and all who want to post can. It made a lot of people angry that any discussion was not allowed. I think the moderators thought that any interest in it would fade away if they just allowed it. It seems that the more something is opposed, the more people want to hear about it.

We have had some discussion on it here, but it's been a while. At first I thought it was another farce but must admit I am interested by what is being said and am trying to keep an open mind. I'm listening with interest but don't comment.

Catatonic, our natural alternatives expert has posted on this in our forum. You may want to do a search here under Truehope or Empower and see what comes up. I remember a post a long time ago where she looked at each ingredient and gave a summary of what it does. The company (originating in Canada) was having legal problems trying to market it and some people were threatening law suits claiming it didn't work and it was not guaranteed so they felt they were taken in by promises with no results.

Personally, I am not listening to any of it, either way. All my energy is spent just getting through the day and trying to keep my boy stable with the traditional meds I know will work. I am happy for the parents who claim to have success but don't know them so can't say either way what's up with it.

It bothers me when someone becomes aggressive with their comments. It doesn't leave room for "open discussion" and has the feel of a privet war if you question or disagree. I know what works for me. This site will always be home to me. This is where I know I will get true support or intelligent and tactfull discussion when I ask for it. I'm not trying to convert anyone and think if something works for you then that's great.

I think the best thing about that site is all the information and links that are available. It's all under one roof so you could spend hours in research there. Another attraction is all the good posts made by "Dad". You know him from his posts here. He always gives outstanding links, he's like our "Catatonic" here is with research.

[tchermom]

Hi! Just wanted to add my dd's two year experience with empower. We never got up to the loading dose which was 18 capsules per day. My dd had violent tantrums on empower even at 1/2 capsule. The support staff at TH was wonderful and spent many hours with me on the phone. I suspect my daughter's body was sensitive to the ingredients so we did not have much success. I really wanted this to work in the worst way so we put up with the horrible behavior until we could not take it anymore. Empower does work wonders for some but not us.
We have been to the Amen clinic where she has received the most relief. At this point the tantrums are under control yet we are still dealing with other behaviors (ADHD/mood stuff/ld. Hope this sheds a little light! Thanks!

[Mayleng]

Just wanted to add that the Canadian Government had banned Empower from Canada. But I heard from someone on the Schwab site, that her very famous psychiatrist (I don't know his name ) is doing a clinical study using supplements like Empower to see if it helps BP. But I have not heard how the study went or still going.........

[2pearl]

verrrry interesting. It's certainly worth keeping an eye on I guess.

[ohmama]

Tchermom,
I remember reading from other posts that you went to the Amen Clinic. I also found it to be the best with giving an accurate dx and treatment plan. That's another thing, on the bpkids site the Amen Clinic is always shot down. At first I thought it was a misunderstanding concerning the scans that they do. People often think that it is the scans alone that determine the dx. This is not true and the Clinic does not claim that, the scans are only one of the tools used to help with the evaluation by actually seeing the brain abnormalities. Better than just an "educated guess", I think. From there, it is put together with the family history and symptoms. Many of the standard psychs don't even look into the family history and come up with a dx by using a generic checklist of symptoms, the old one size fits all!

Anyway, to make a long story short it is looked at as a rip off since scans are not recognized as a valid tool according to the majority of psychs. Even though they are accepted in research they are said to not be ready for the ability to help with a personal dx. I think all anyone has to do is read one of the books Dr. Amen wrote and think for themselves if it is logical.

After all the misinformation I called the Clinic and spoke with Angela, the doctors assistant in charge. I believe it is always better to go to the source rather than listen to those who criticize. She sent me a very long and intelligent letter with the details explaining why this negative information is not correct. I never got into it with the bpkids site because as I said, all my energy is going toward helping my son (virtual school, medication research, psych appointments, etc). The work is endless.

Mayleng,
I think that Empower in Canada has been back in business now that they have complied with the laws governing the sale of the product. Since they are up and running that must be the case unless they are still illegal? I don't know what went on with the personal law suits though, I guess that's another story.

[Mayleng]

They had to sell from the U.S. to the Canadians even when it was banned in Canada, but I didn't know that they have finally complied with the Canadian requirements.

[2pearl]

I've decided to change to a new psych. Our current psych has helped us a lot but there a few things about her that I'm not satisfied with. So I decided to go BACK to Children's Memorial Hospital. of course I already know it's going to be a 3-4 month wait.


Anyway,The intake co-ordinator called me today to get all of our information. She put me on hold after we had been talking a while and when she came back she told me that we may qualify for a study on BP Children that is going to be conducted by one of their child psychs who specializes in BP. If we qualify we get a full diagnostic evaluation, meds and everything else for free. We would have to be willing to hospitalize him briefly though.
There is a possibility that we won't qualify though because of his seizure disorder. The director of the study is going to be calling me this week.
My first thought here is that this is fantastic. I doubt there is any other way to get a Dr. to focus so thorougly . I may get a lot more information and testing than I could get for DS otherwise. Plus, I won't have to sit on a waiting list for months and months.

Has anyone here ever participated in a study before? My only concern is that he would be used as a guinea pig for some medication and that would not be Ok with me. They're going to be calling me back, possibly today. What kind of questions should I be asking them?

[ohmama]

Pearl,
I agree that this is a wonderful opportunity! There are quite a few who have taken part in a bp study over on the bpkids site. You may want to post your question over there to get some first hand experiences. I've only heard good things about getting involved in this for your child.

My advice is to get all the details from them in writing and look it over, then you will know what questions to ask. I imagine they would want you to sign a contract? This should state all the details of what they will be doing with treatment as well as medication use. I would also want to know about any experimental medication or treatments. Be sure to get it in writing.