Thursday, August 17, 2017

Reducing Lithium & Questioning Bipolar Disorder Diagnosis

It’s been almost a year since my last post, but for those following our story, or just tuning in for the first time, I believe it’s important to share the whole journey, especially with the use of medication over the years. Today I wanted to share with you a big change regarding our oldest son’s use of Lithium and our questions regarding his previous bipolar disorder diagnosis.

Our oldest son started taking Lithium 6 years ago and from the first month of taking it we saw incredible results. Our son shared that he felt happiness for the first time, his rages almost completely stopped and he has remained stable for the past 6 years. We only recently had one violent rage over a year ago, after which we discovered he outgrew his dose causing the Lithium to fall below therapeutic range. After increasing the dose, he immediately became stable and has been free of rages since then.

Today we face a difficult decision about his continued use of Lithium.

Our son was born with a kidney defect that caused damage to his kidneys when he was 6 months old. Throughout his life we have monitored his kidney health, making sure that the kidneys keep up with his growing body. Now at 16 years old, he stands 6 feet tall and his kidneys have started to show signs of distress. For the first time, his protein levels in his blood are gradually increasing. This is the expected result of kidneys not being able to do their job. Due to his birth defect, he now has one kidney half the size as the other, it’s only working at 10% and the other kidney at 60%. It’s reasonable to assume that the increase in protein is the result of his damaged kidneys trying to keep up with his growing body.

But there is another possibility.

Lithium is known to cause kidney damage in some individuals. Is it possible that the increase in protein is due to the Lithium? Possibly, but we just don’t know. At this point, his team of doctors have researched this from every angle and they have determined that there is no way to know for certain if it is the Lithium or his birth defect responsible for the increase in protein. But what we do know is that we can’t keep doing what we are doing.

Our psychiatrist has encouraged us to remove our son from Lithium because he is fearful that he might end up on dialysis, but the nephrologist wants to keep our son on Lithium so he stays mentally stable and instead add another medication to help protect the kidneys. As she said, “I can fix kidneys, but I can’t fix a kid who takes his own life”.

If you recall, my best friend died from suicide after removing herself from Lithium. I am hyperaware of what is at stake.

It’s challenging having both teams of doctors not agreeing about what to do, leaving the final decision to my husband and I. Even if Lithium isn’t a problem today, I know that with the condition of my son’s kidneys, it may be a problem in his future. So we have decided to slowly remove the Lithium and see what happens.

This is scary for us.

My heart still races when I remember my son’s last violent episode, I remember being terrified to my core as I looked into the eyes of a person that did not resemble my son.

It’s hard not to feel vulnerable about quitting Lithium since our son responded so positively to the increase that followed this episode.

On the flip side, I am trying to take into account that last year our son was diagnosed with Autism (Aspergers). So it does bring into question his original bipolar disorder diagnosis. Is it possible that what he has is autism, depression and anxiety? If so, can he go without Lithium now that he is older and more in control of himself?

In response, our psychiatrist agrees it’s worth considering in light of his new diagnosis, yet, he also expressed the following:
“Both Autism Spectrum Disorder and bipolar disorder are common so it is not unexpected that by chance someone could have both conditions. Neither Autism Spectrum Disorder or bipolar disorder is just one thing (like strep throat or appendicitis, where there is a single and necessary cause), but rather syndromes of clusters of symptoms that are seen together, and which can have many possible causes. There is much uncertainty about true bipolar disorder type 1 in children, but in teenagers we expect to see symptoms and cycles similar to adults. Who knows what his adolescence would have been like if he had not been on lithium carbonate. I have been reluctant to stop the lithium carbonate in the past because you and he see him doing so much better, and when he started to slip with behavior, he improved with a dosage adjustment. While a response to a medication does not prove or disprove a diagnosis, a dramatic stabilization with lithium carbonate and reduction in rages and mood swings and emotional reactivity makes the possibility of bipolar disorder sound likely. Only time will tell.” 
Ugggg... it’s the “time will tell” that’s hard to live with.

But our psychiatrist stands by his opinion to remove Lithium:
Even if I were certain he had bipolar disorder, I would not want to have him on lithium carbonate if his renal function were deteriorating.
As we consider the possibility that our son may not have bipolar disorder, we question why my son had quick mood changes and visual hallucinations where he saw shadow people and monsters in our home. Is it possible that the first mood stabilizer he took, Trileptal, caused this? (He quit Trileptal successfully a few months back). Or as a respected pediatric specialist has suggested to me:
“As for mood cycling and shadows these are all reported by patients with bipolar disorder, but also may just represent a general neurodevelopment issue, which your son probably has since he has been diagnosed with autism as well. It is my belief that lithium for some kids at the right time in brain development can really support healthy development… but then at some point would hopefully be tapered off.”
Throughout the years I have read wonderful things about Lithium and how it can actually heal the brain, it is my hope, as the doctor suggested above, that our son’s Lithium use, given at the right time in development may have changed the course of his brain, helped heal it, thus allowing us to taper it off.

I am praying that this is the right time.

We are in our first week of reducing Lithium. So far, so good. Thankfully our son recently has taken up a serious interest in exercising. He says it helps his depression. Last night he ran 5 miles on the treadmill, he said he ran until it made his depression feel better. Hopefully it will be enough to keep the depression under control. In addition, he will continue to take Wellbutrin, we hope that this medication alone will manage his anxiety and depression.

In the meantime, we wait and watch carefully.

I am hoping that some of you can share your experience if you have been able to successfully remove your child from stabilizing medications once they got older. Or if you have learned valuable lessons when it didn’t go well. Also, please share if your child was diagnosed with bipolar disorder to later have that diagnosis removed. I could use the encouragement and wisdom!

* * *

(As always, this post was written with the permission of my son.)

This Weekend!
13th Annual Stanford University Mood Disorders Education Day
Saturday August 19th 2017
8:00 a.m–2:50 p.m.

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  1. There are other drugs for bipolar? My daughter and I have been on Seroquel (weaning off that was ... hard... but it messed with our metabolism and cholesterol) and now we're both happy on Lamictal...VERY happy. She also takes Abilify, and I take Topomax. We both have bipolar 1. There are other meds. All medicines are risky. My daughter and I won't risk suicidal behavior--I speak for myself and her alone. We are suicidal and hallucinate w/o antipsychotics.

    1. Thanks for commenting Deborah, Yes, you are right, there are other meds for bipolar disorder. Prior to Lithium, my son tried, Seroquel, which made him want to kill himself, then we tried Depakote and Lamictal. He has been on Trileptal for many years, we only recently removed him from that the last few months. If the Lithium removal doesn't work, we will immediately put him back on Lithium until we find another medication to try. I agree that suicide isn't anything to risk, so we are trying our best to check in with him often and monitor symptoms. I am glad to read that you have found what works for you and your daughter, medications can really do amazing things, but like you mention, there are risks and we have to constantly assess them.

  2. Also, for what it's worth, my daughter has severe autism; I don't. Her bipolar was treated first. It helped with her rages as well as her hallucinations. She went off meds with one doctor---to discover her baseline. Worst period in my life. She went raging mad. She got back on meds and gradually became stabilized. She still has issues with compulsive behavior and anxiety due to autism but no mood swings like with the bipolar. No severe depression or tantrums. Again, just my experience. Blessings.

    1. I'm curious, how soon after you removed the medications did she become unstable?

  3. For my son once we removed abilify and upped lithium he became the kid I know. It took us over a year and multiple suicidal days to get him off abilify. He is now on 1350mg of lithium. He was also dx w aspergers. He is doing so great. Thinking of you all. Xo

    1. Thanks for sharing Paula. I wish my son didn't have the kidney defects, because Lithium has been amazing, it worked better than any medication we tried. I still think it is a wonderful option for helping to stabilize moods and give people a life worth living. I am glad to hear your son is doing great on his dose!

  4. Thank you for sharing your experiences. My 11 year old son is just starting Lithium and I am hopeful (as I always am when he starts a new med.) Will be rooting for you guys.

    1. Thank you! I wish you the best with Lithium, it was a life changer for us and lead to so much progress for our son.

  5. Thank you so much for sharing! My son (14 y o now) sounds exactly like your son. He was diagnosed with high functioning autism and ADHD at age 7 and oppositional defiant disorder at age 11 and borderline retardation at age 13. He used to have very explosive and violent behaviors until he was put on Seroquel along with Lexapro. Once he started taking Seroquel, he doesn’t see shadows and other scary things anymore. Once in a while, he is bothered by noises at nighttime that only he can hear. When that happens, he puts on his headphones and listen to music till he falls asleep. He can still get very angry and scream but he is able to calm himself down fairly fast...maybe within an hour which is nothing compared to the extreme behavior that lasted 7-8 hours each time in the past. In school, he is excused from doing any homework and is doing part of the school day in special ED and the other part in regular class with assistant. He’s been taking social classes for a couple of years to learn how to interact with peers and how to function in society in general. Neither school or I have to call the emergency hotline or the police on him anymore. We have come to terms with the fact that he will always have to live close to us or to live at home for life. Some places seem to have really good homes for adult people like him where he could be as independent as possible but still have all the help he might need.

    Thanks again for sharing!


    1. Thank you Annette for sharing your story! It sounds like you have had good progress!