Is it Lithium Time??

[JKF]

Our adult difficult child (18) is having major problems. A little background - He's been in a group home for most of his teen years and was back home for about 3 months last year before he threatened to kill me. He was going into daily rages, stealing, threatening, etc so we had no choice but to remove him from the home. We have another child who is 11 and can not be subjected to that kind of behavior. In May, he moved into his permanent housing. It's a group home that houses young adults ages 18-24. Well, he hates it - just like he's hated EVERYWHERE he's ever been including home. In difficult child's mind it's his way or no way and if he doesn't get his own way all hell breaks loose. He's always been like this and I don't see it changing anytime soon.

Anyway, at his current placement he flat out refuses to participate, he steals, he punches holes in the walls and destroys property, he runs away constantly, etc (same as he did at home which is why he's no longer with us). On Sunday he wound up in the psychiatric hospital but they released him on Monday. Last night he refused to participate in group session, destroyed his recently re-patched room and got in a fist fight with another resident. Apparently my son got the worst of it. So, back to the hospital he went after threatening suicide, homicide, etc (which he does EVERY TIME he has a problem he doesn't want to face). Well once again the hospital released him and he's back at the group home. I'm just waiting for the other shoe to drop because I KNOW he's not done with all of this BS. Once he starts like this he spirals all the way down and then back up to the top for a few good weeks, etc, etc, etc. I know some of it is behavior but it's also the bi-polar so the combo makes it worse.

I spoke to his therapist and requested she have his psychiatrist call me. I feel like he needs a medication change. He's been on the Abilify for years but clearly it's not working. I've heard Lithium works wonders for people like him who have such strong impulse control problems. Do any of you have experience with Lithium? Any suggestions?

 

[CrazyinVA]

Lithium used to be the go-to drug for bipolar, and many docs still use it but it has some drawbacks -- one of which is that you have to have levels checked regularly. Some patients experience lethargy on it, so it can be tough to get them to keep taking it (Youngest hated it - Lamictal works best for her). It does sound like he would benefit from a mood stabilizer of some type, though, and there are many options out there these days. Definitely worth asking the psychiatrist, and hopefully he/she has a release to talk to you?

 

[susiestar]

Abilify can be helpful for those with bipolar, but it is NOT a mood stabilizer. It is an atypical antipsychotic and is usually helpful with rages, etc....

Are you aware that there is a recommended medication protocol for treating bipolar disorder? I know it is in the book, "The Bipolar Child" by Papalous, and it is recommended by the board that certifies psychiatrists. It is basically the same regardless if the patient is an adult, child or adolescent.

MANY psychiatrists seem unaware of this until you tell them you want to follow it. The psychiatrists we saw all wanted to say my son was bipolar (in spite of having almost none of the symptoms but most of the Aspie symptoms and an Aspie diagnosis) and they didn't want to do testing, just to write it down and put him on antidepressants. Antidepressants are the LAST LAST LAST thing an unstable person with bipolar should take. LAST thing. They CAUSE mood cycling. this has been shown in many studies, but for some reason most of the psychiatrists here want to ignore that. Drove me batty and I pestered them with WHY???? WHY not follow the protocol approved by the board who certifies you?? Usually I pestered until they said he wasn't bipolar (because he wasn't - many round of testing, etc proved it.)

If I had a child with bipolar, I would be pressuring the psychiatrist to put him on this protocol. It calls for starting with one mood stabilizer and then adding a second if needed. It can take 6-8 weeks to know if a medication is working, that is AFTER you get up to the therapeutic level. An atypical antipsychotic like abilify or risperdal or seroquel is also added in the early steps if the patient has the problems your son has. My son did take risperdal for several years and it was a huge help with his violence. I would suggest trialing another atypical antipsychotic if the abilify helped but isn't working as well now, and adding a mood stab also.

Lithium is a mood stab. it is often the 'gold standard' for bipolar patients because it seems to work for many of them that the newer medications don't help. It also seems to be one of the mroe effective ones. It does need blood tests, but many of the mood stabs do. Actually your son should have had bloodwork done before starting an atyp antipsych like abilify or risperdal, and some done periodically also.

For the majority of bipolar patients, once the right mix of mood stabs and atyp antipsych medications are at a therapeutic level (it can be a long hard road to that point though), most of their symptoms go away. For those that still have anxiety or depression or whatever, sometimes very small doses of antidepressants are tried, or stims if the person still has adhd symptoms. but I have seen a number of people with bipolar who had a total change once they were on mood stabilizers. they didn't lose who they were, they just became the best possible version of themselves.

I strongly recommend reading The Bipolar Child by Papalous and asking the doctor about the medication protocol = insist on it even. You also might want to look at the section of the book about medications that can cause mood cycling - medications like decongestants, stimulants, antidepressants, etc.... Knowing about that can help you make sure his psychiatrist is helping him effectively. Don't be afraid to ask the doctor why he wants this medication and not that one, and esp why he doesn't want to follow the protocol if he balks. And read about the medications before your son takes them, if possible.

I know a lot of people with bipolar and most of them have been shocked at how much better they felt once they got a doctor to follow that protocol. I even know moms here who finally got on mood stabs and were truly amazed at how they felt - they didn't know they could feel that good, that stable. Hearing that from moms here, and from people I know in real life makes me a firm believer in this medication protocol. Enough that I really pressured three different psychiatrists who wanted to change my son's diagnosis simply because he was a new patient (here they all want to give you a new diagnosis even if you only went to them because your psychiatrist moved or retired! even if the medications you are on are working wonderfully! Drove me NUTS!) and they wanted to 'reinvent the wheel' and ignore all the testing we had done. Usually they backed down because they didn't want to explain why they thought he was bipolar and why the antidepressants were better than the mood stabs. One told the that "the drug rep said that lexapro did a better job than mood stabilizers if you are bipolar." He had NO scientific or researched info on the subject, just what some marketing person told him (drug reps are paid to buy lunch for docs and staff, set up golf outings, hand out pens and hand sanitizer, and tell docs that their medications will fix everything. Drug reps are about SALES and not about medicine, and that doctor never again spoke t me about drug reps. He didn't realize that a number of my classmates from college are now drug reps and a drug rep will say almost anything to get a doctor to rx their drug. They are great salesman usually.

Sorry if I ranted, this drives me nuts. I want medications rx'd because they do what is needed, not because someone took the doctor golfing or to a seminar on a beach or gave him a handful of pens. I do think the medication protocol is your best bet for helping your child. Even though he is 18, the book may still be very helpful.

 

[firehorsewoman]

Hi, JKF. I'm sorry that things are so difficult for you and your son. My difficult child son is much younger than yours but I do have some experience with lithium as well as antipsychotic medications to share with you in case it might help.
My difficult child has displayed out of control anger, defiance and violence from a very young age. He was asked to leave the first three preschools that he attended. His second day of kindergarten resulted in me being met by the principal when I came to pick him up. He had been on Trileptal since age two for seizures which is a mood stabilizer but was also put on Risperdal by his epileptologist at three years old after a 24hr EEG monitoring video documented his violence towards me and the medical staff. He did very well on Risperdal+Trileptal for several years but the doctors took him off Trileptal because he outgrew his seizures.

After that time when my son was 4 1/2, his father and I divorced, and my son was taken off of Risperdal because of very high serum prolactin levels. Then he was started on ADHD stimulants because his father preferred the diagnosis of ADHD vs the ODD (he had been diagnosed with both disorders via neuro psychiatric evaluation done twice three years apart at same hospital) and believed at that time that all he needed was ADHD medicines and not a mood stabilizer. The doctors really didn't know how to handle our disagreement regarding medications so they just kept trying all of the ADHD options out there.
Fast forward to this past July after three years of my son talking about suicide (yes this started at five years old and yes I repeatedly reported this to his psychiatrists) and behaving violently my ex-husband finally admitted that he sees those behaviors and hypersexuality in his home as well as me reporting that I see them in mine. He was also getting in trouble for saying inappropriate sexual stuff in school. My son was taken off of Adderall and Concerta and started on Lithium alone in July of this year. His diagnosis was amended to include Mood Disorder-not otherwise specified, his psychiatrist is reluctant to officially call it Early on-set Bipolar but that is what she tell us she suspects. In addition to his past rapid mood cycling the extreme hypersexuality both in the home and at school was a red flag for young kids with early onset bipolar.

Since starting Lithium we have had zero days of suicide talk and only two short lived violent episodes in three months. The hypersexuality has decreased by about 80%. That has been a huge success for us. Not that everything is perfect, it is not. My son is still an extremely difficult child in many ways. He is also still having problems with conduct at school and also still having problems concentrating. We are just this week cautiously adding in an ADHD stimulant again to see if this helps with the ADHD now that the lithium has appeared to have stabilized his mood. He has had no side-effects from the lithium thus far. In regards to the frequent lab tests we are used to that from other medications he has been on in the past.

Once again, I know that our situations are not identical, but posted to give you some feedback on lithium in case it helps you at all. I agree with Susiestar that the "Bipolar Child" is a great resource. I truly hope that your son gets some help soon! My thoughts and prayers are with both of you.

 

[DammitJanet]

My son was considered bipolar from a young age and he took a boat load of medications. I think we went through depakote, lithium, neurontin, trileptal, and maybe some other that I have forgotten. I know he was also on several AP's. Risperdal, abilify, geodon, That one that really packs on weight I cant remember the name of right now, and then we Saphris.

He has had better luck in the beginning with lithium and ability but together they gave him these really bad hand shakes. I know it was the lithium. Even cogentin couldnt stop them. Now he is trying abilify by itself and it seems to work somewhat. Of course we dont think he actually has/had bipolar. We think he had TDD.

 

[Hound dog]

If his pattern of behavior isn't changing, his medications aren't working. I dunno if lithium would help or not. I've known several who have done very well on it. Others, not at all.

I'm wondering though.......given his history, has he ever had a medication wash (where they wean him off everything and basically start over, done in patient) or a new evaluation done to make certain the diagnosis is the correct one? (if his dxes were made at a young age, this might be a good idea)

 

[Hound dog]

Janet, what is TDD? You might have told me before but if you did I've forgotten.

 

[DammitJanet]

temper disregulation disorder

It is a new diagnosis in the DSM V that looks like early onset bipolar but if falls under an impulse control diagnosis. It really is a better diagnosis for kids who show the signs of Early Onset Bi-Polar (EOBP) but may not later have bipolar as an adult. I am going to go out on a limb here and say most kids will probably end up with TDD and then if they still have bipolar as an adult, it moves over into adult bipolar. Now I do think there are some kids who have early onset bipolar and I am one of them. I think there are ways to tell. The truly manic swings are one.

 

[Hound dog]

Hmm. Nichole could've used the TDD diagnosis instead of the bipolar diagnosis. It would've fit her better. And in my opinion I've seen nothing with her behavior to indicate that she progressed into adult bipolar. These days her issues stem around anxiety and she's learning to cope with that now. Her "bipolar", according to psychiatrist (who was an excellent psychiatrist) manifested itself mainly via anger and impulse issues. I never quite bought that because she never ever had mania. Nor does she now. Not even hypomania. She's actually done better off medications than on them, although when she was on them she needed them and I certainly do not regret it for a moment.

 

[susiestar]

TDD would have fit Wiz very well. Though I think it may be called Disruptive Mood Dysregulation Disorder. I found a page on the American Psychiatric Assoc's DSM 5 website that talks about the name change and has the specific diagnostic criteria for whichever name they end up calling it.

Regardless of the name, I am glad they are recognizing that there is something else that is causing bipolar like symptoms in kids but it isn't bipolar. the next question is how do we treat this? I really pray that they specify Occupational Therapist (OT) so the kids can learn ways to soothe themselves when they are sooooo full of rage.

 

[compassion]

Lithium is really helping my daughter a lot. She has been on it without any other medications now for four months. Ahe has been on lithium for nearly nine months. Befoe that, she was on abilify for three and a half years with lactimal most of the time nad topomax for 5 months. She was also on lexapro for a year and cogentin. FOr a few months, this past year she was on loxapene and gabapentin.

 

[Holden]

Compassion, did your daughter go symptom free for those three and half years with abilify and lamictal?