Friday, July 29, 2011

Lithium at 29 Days

We’re now 29 days in on Lithium. My son recently increased his dose for the first time and felt a little nausea and loss of appetite, but now he’s feeling great and free from side effects.

This week, we had another blood test and are happy to report that at .9, he’s in great therapeutic range and the doctor has decided to leave him be and see how he does when he returns to school.

Overall, we can’t be happier with the results we’ve seen so far. He continues to be more social, having play dates everyday. He’s also trying to get along with his brothers more and likes to help out around the house. Recently, he took on a dog sitting job for a neighbor and has loved earning extra money and even saved up a little to buy himself a desk for his room. This was a big step since he’s never been able to save money, typically spending it right away. He’s also talking about being excited for school to return and hanging out with the cool kids. This is amazing, if you consider that at the end of school a few months back, he wasn’t even able to socialize. Additionally, he continues to take on more adventurous activities without being rattled by his anxieties, simply put... he seems like a normal 10 year old boy!

We don’t have a perfect child by any means, but this is not what we’re striving for. He doesn’t seem drugged-up or like a zombie, instead he’s very engaged, often following me around the house chatting away and seems to have an ease or calm about him. At times, he falls into old behavioral habits of acting poorly, but unlike the past, we’re able to reason with him and guide him on how he should act. This is a first, since in the past, any type of correction would lead to escalating behavior or even a rage.

So what can I say, we’re living our dream right now. I feel like we have our son back and he’s seeing life with a new pair of eyes.  Praise God and pray that this success continues!

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Image Source:

Tuesday, July 26, 2011

Congratulations Jeremy Tucker!



I recently came across this news article about a young man, Jeremy Tucker who along with his friend Ruben Pracas, decided to get the word out about mental illness and share his own personal experience of growing up with a parent with bipolar disorder. What resulted was a short film and a win at the National Youth Film Competition.

This film was made at an Australian youth camp organized by Wanslea, a camp created to help kids going through difficult times. Since many of the kids are uncomfortable talking about their experience, they were asked to express themselves on paper. (Wearne, 2011) Check out this award winning video above and read more in the article below.

I really appreciate those who open up and use their challenging experiences for good. It’s also encouraging to see young people talk about mental illness and step up to fight the stigma.

Congratulations Jeremy Tucker, you make a Mama Bear proud!


News article about Jeremy Tucker’s film and award:
http://au.news.yahoo.com/thewest/a/-/wa/9712243/mental-illness-message-in-jeremys-new-focus/

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Video Source:

Uploaded on YouTube by  on Mar 28, 2011

References
:
The West Austrialian
Phoebe Wearne
http://au.news.yahoo.com/thewest/a/-/wa/9712243/mental-illness-message-in-jeremys-new-focus/
Published: June 27, 2011
Consulted: July 26, 2011

Monday, July 25, 2011

Increasing Lithium

Several days ago we increased my son’s Lithium dose. Our psychiatrist wanted to move my son’s blood level deeper into the therapeutic range. His hope is that by increasing the dose, we’ll see optimal results and stability, particularly since he’s handling the medication pretty well so far.

The only unusual behavior we’ve seen lately, was an evening where as we were heading up to bed, my son became overwhelmed with an impulse to clean. It started out with him vacuuming the whole house. I thought that after he was done he would’ve released some of that energy and be ready to settle down, but the opposite happened. He went though the house picking up anything he could find, then tackled the playroom with a vengeance. His moves were very fast, almost frantic, he had a clear compulsion to clean. At one point, it seemed like this compulsion was controlling him, he couldn’t stop himself, even complaining of a headache, but said that he couldn’t stop, “I NEED to clean!”

When I asked him what would happen if he stopped cleaning, he said that he would do something bad, he would wake up his sleeping brothers and hurt them, so he needed to keep cleaning.

After about an hour, he started to slow down and agreed to take his evening dose of Melatonin. Thankfully, that put him to sleep quickly.

After this episode, I thought about all I had seen and his response that he couldn’t stop or he would hurt his brothers. It made me wonder... could this be the more mild form of his previous rages? Could all his past rages been a form of “too much energy”, even a short episode of mania? And now with the addition of Lithium, he has greater control of these episodes and is able to choose a better way to burn off this energy?

His therapist agreed that this was possible, but as usual, our psychiatrist didn’t put a label on the behavior. Either way, having him exert energy in ways that don’t hurt others is a step in the right direction.

On a positive note, my son has proudly taken up skateboarding. In the past, he’s always been too worried and stressed out to enjoy this activity with the other kids, but now that he’s feeling better, he’s trying new things and liking it.

You should see his smile!

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Photo Credit:
Brandon Cheeks

http://www.sxc.hu/profile/thecheeks

Friday, July 22, 2011

Welcome Oprah Viewers!

Today the Oprah show did a re-air of The Boy Who Tried to Kill His Mother. If I hadn’t known from the advertisements, I would’ve known from the large number of hits to my blog due to the google searches that pulled up my links regarding this episode.

I figured this would be a great opportunity to take a moment to welcome anyone who’s visiting my blog for the first time in search of information about children with mental illness. I want to welcome you and invite you to ask any questions about my 10 year old son and our unique situation. If you don’t want to ask publicly, you can email me with the address listed in the right column. Or you can become a follower and watch our journey as we go.

For many families like myself, we live in isolation, often facing ridicule from the community that surrounds us. If I could share with you our truth, maybe there’ll be more understanding and compassion. Allowing my son and children like him to live in a world where they’re supported in their weaknesses and valued in their strengths.

So, Oprah viewers, what would you like to know?

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Link to the original post after the show:
http://mysonhas2brains.blogspot.com/2011/02/oprah-boy-who-tried-to-kill-his-mother.html

Link to my post, My Son Does Not Need an Exorcism!:
http://mysonhas2brains.blogspot.com/2011/02/my-son-does-not-need-exorcism.html

To learn more about our story refer to the list of “My Important Posts” located in the right column.

Video Source: 
Uploaded on YouTube by OPRAH on Feb 17, 2011

Tuesday, July 19, 2011

19 Days and Counting...

We are 19 days in on the Lithium and still no problem side effects. He seems to drink more often due to the increased thirst, but there’s nothing to complain about. (Crossing fingers)

On Sunday, my son’s sunday school teacher pulled me aside to say that my son did really great in class and was a lot more engaged compared to previous classes. This was the first time this teacher has approached me and she had no idea about his medications. I found this to be a nice measure of how well he’s responding.

Earlier in the week, my son and I went on a night walk and I was overwhelmed with what a magical experience it was, seeing him laugh, be silly and connect with me like never before. When I came home and shared with my husband how great it was I said, “Who is that kid? It’s like meeting him for the first time!” My husband agreed and said, “This is our real son.”


Monday, July 18, 2011

My Visit to Stanford University 2011


Last weekend I had the opportunity to attend the 7th Annual Mood Disorder Education Day at Stanford University. I went last year for the first time and wasn’t sure if I should go again because it could be the same information, but I was pleasantly surprised to find that this wasn’t the case. If anything, this visit has encouraged me to attend every year!

This year there was a lot of focus on the biology of mood disorders, it was fascinating to hear about the latest research and what lies ahead in the future. Here’s a few highlights from my notes, please keep in mind that this is my interpretation of the information presented. Once Stanford posts the presentation slides online, I’ll let you know.

To my delight, Dr. Alan F. Schatzberg, Professor of Psychiatry and Behavior Sciences and the Director of the Stanford Mood Disorder Center, opened up with the declaration that “Mood disorders do occur in children.” He explained that in the past, they thought it wasn’t possible prior to the age of 18 years, but today they confirmed that it does occur. He also shared how they’re looking into different genes to determine how individuals respond to medication and what their typical symptoms will be when exposed to stress. Can you imagine a day when they’ll be able to examine genes and determine what medication will help the most, eliminating the years that patients struggle going from medication to medication in search of the perfect cocktail, while exposing themselves to awful side effects along the way. This is very encouraging!

Dr. H. Brent Solvason, Associate Professor of Psychiatry and Behavioral Sciences, gave a lecture on  Neuromodulation treatments for those who are treatment resistant, which unfortunately is a large population. So far, ETC (Electroconvulsive Therapy) remains the most effective treatment for these hard to treat cases with 75% getting well after treatment. Keeping them well remains the challenge. Among other treatment options discussed, one that I found very interesting was Cyberknife Treatment for bipolar depression. They use a low dose of radiation and target an area in the cortex. It’s a painless procedure that’s only been studied on two human cases. So far, the results are encouraging. What I found fascinating about this treatment was that individuals could get better through a “no contact” surgery and avoid a life long battle with medications. I look forward to hearing about this research in the future.

One of my favorite speakers is Dr. Manpreet Singh, Assistant Professor of Psychiatry and Behavioral Sciences and Co-Director of the Pediatric Mood Disorders Clinic. In her presentation, she discussed how mood disorders cause major development issues in children. She discussed the strong heredity link in families and how the disorder looks different in children than adults. She explained that in children with bipolar disorder, it’s difficult for the child to regulate impulses and emotions. She used an example of a child, who as a young toddler, may not have the brain development to look both ways before chasing after a ball in the street, but as the child grows, the brain develops and allows the processing to take place to evaluate safety and gives the child impulse control, so they think to look both ways before crossing the street. In the same way, children with bipolar disorder lack this developmental function so they can’t control their impulses and emotions like other children their age. She explained that in the prefrontal cortex, interactions in the brain go wrong due to disconnections between areas of the brain. Another interesting topic discussed was that bipolar kids tend to read neutral facial expressions on others as being hostile or angry. I found this to be very interesting because I’ve had numerous occasions where my son will ask me, “what’s wrong? You look angry,” when I was casually doing something.

Later in the day, we got to break into smaller groups and ask questions one-on-one with a few of the presenters. I found this session to be worth the long drive alone! Of course I went to Dr. Singh’s group for Child and Adolescent Mood Disorders. Can you imagine being in a room of about 20 parents and having a doctor available to answer all of your questions for 2 whole hours? I found it pretty amazing!
(Can you tell?) 

During this session, there was a discussion about the heredity of mood disorders, in response, Dr. Singh discussed the “Goodwin” study among a few. This particular study showed that when one parent has bipolar disorder, there’s a 30% chance that the children will have a mood disorder. When one parent has bipolar disorder and the other parent has mood issues, there’s a 70% chance that the children will have a mood disorder. She also shared that in children who have symptoms that look bipolar, only 10–15% actually have bipolar disorder as an adult, with the remaining having depression instead. For those kids that do develop bipolar disorder as a child, the disorder tends to be a more severe form as an adult.

Other highlights from Dr. Singh included:

The benefits of taking Lithium and how it restores brain matter in the frontal cortex and through research has proven to help prevent suicides.

30% of bipolar patients had depression first. Depression can be a precursor to bipolar disorder.

It takes an average of 16 years to get a bipolar diagnosis.

When it comes to medications, there has to be a risk-benefit evaluation: Live with the symptoms or live with the side effects. What’s worse?

When it comes to symptoms in children, we can’t guarrantee what’ll happen, we need to wait, watch and wonder. Don’t let your anxiety define your child’s outcome.

You should track moods and always evaluate “What are we doing with these medications—Is this working?”

It’s still unknown if early treatment curbs the progression of the disease.



In addition to the above, there were great speakers about “Sleep and Mood Disorders” and the “Nature Verses Nuture in Mood Disorders” along with presenters from NAMI and DBSA which can be read about in the slides found on http://bipolar.stanford.edu/ once they’re posted to the website.

But I have to admit, one of the most enjoyable parts of this event was to meet some of you in person! Thank you Bug’s Mom, Heather and SW for making this a great day!


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Links recommended by Dr. Singh:


A Guide to Psychiatric Medication for Young People:

http://whatmeds.stanford.edu

Youth and Bipolar Foundation of Northern California
http://ybfnc.cfsites.org/

Slides for this event will be posted at:
http://bipolar.stanford.edu/

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Keep your eyes out for an upcoming post with Robert Villanueva, the West Coast Regional Director for Lets Erase the Stigma and National Trainer for NAMI! I had the exciting opportunity to meet him in person and discuss his latest developments geared to end the stigma of mental illness. As a person who lives with Bipolar Disorder himself, his mantra of “I live well with mental illness” gives hope for many of those still struggling.

Wednesday, July 13, 2011

Are You Real Mama Bear?

After posting my response to the media’s negative attention on children with bipolar disorder, I received a comment asking if I was real. This person accused my blog of being a marketing campaign for CABF (Child and Adolescent Bipolar Foundation). I was so surprised that my authenticity was in question, so not only do people think that we’re bad parents for putting our kids on meds, but they think our stories don’t even exist. It shows that we have a long way to go in ending the stigma for mental illness in children. Taking one step at a time, here’s the response I left:

Are You Kidding Me!!!

LOL! I can’t believe you don’t believe I’m real. I’m not even a writer. I’m just a mom who has been living in hell for the past 3 years trying to help my son. The only reason I’m anonymous is because I’m trying to protect my son’s identity. He’s only 10 years old and I don’t feel comfortable using his name publicly. He’s aware that I write it anonymously and has given me permission to share his story. As for my cheap photos, yeah they may look cheap, but that’s because I’m writing my blog for free and I use a website that offers free photos for use in blogs, that’s what real bloggers do. If I was being paid to write on behalf of CABF, the first thing I would do is request access to some decent photos.


I started my blog because I was feeling completely alone, I couldn’t find anyone who had the answers to my questions or who could offer me support for what we we’re going through. If you read all 238 posts over the last 18 months, you can’t in anyway deny that I’m a real person. I’ve asked all the tough questions, cried over my fears and the challenges we’ve gone through. Not every experience with medication has been positive, that’s what makes this whole experience suck, our kids face a medical community that doesn’t have all the answers yet. In fact, I just went to Standard this past weekend in search of more answers by asking researchers the questions face-to-face. But just because we don’t have all the answers to our child’s illness, doesn’t make their illness or their family less real. We are real people, with no agenda other than to have society stop judging us and our children and be kind enough to offer us support like the way you do for children with cancer.

My friend’s son had a brain tumor and she too had to make tough decisions with medication and treatment options. Even tough he’s now in remission, she still faces the concerns of the long term effects of those meds, but she needed to use them to save his life. This is very similar to our own experience. I wish my son didn’t have to take any medication, but after having to lock up all the knives in our home because our son wanted to stab himself, after suffering my own bodily harm from my son going into rages and attacking me or seeing my son beg for the doctor to give him medicine to help stop the bad side of his brain from taking over the good side, medication became necessary. And just like my friend, we’re concerned about the long term use of these meds, that’s why we reach out to other parents, doctors and researchers. We want what’s best for our child, we are trying to save their life.

Every word I write is real and the quotes above are from my son’s mouth. I wish this wasn’t my life, I wish that my son could have his life back and we are working on that. I wish so much that my blog was fake, but unfortunately, I am real.

Tuesday, July 12, 2011

Born Again

“I feel born again.”

These are the words my son used to describe the positive change in his life after starting Lithium recently.

Do I need to say more?

Oh, I can’t resist, so I will. I just have to share that we had an amazing day going outside our usual comfort zone. We got to play miniature golf, go out to a fancy lunch in a new location with new food (always a source of stress) and we even went on a small train ride in an outdoor mall. The entire time my son was engaged with our family in a way that I’ve never seen. It’s like he’s taken a whole new role in our family, he’s so kind, empathetic, helpful and connected to the family unit. A few times he communicated stressors, but to our delight, he was willing to try therapy techniques to overcome challenges and he found out in the end that these stressors were no big deal and he had one of the best days of his life!

* * *

Check back for my next post when I share about my amazing trip to Stanford where I attended the 7th Annual Mood Disorders Education Day. Sorry it’s taking so long to share, but we’ve been having too much fun!

Monday, July 11, 2011

Dear Media...

I’ve written the following in response to the flood of articles written recently with claims that bipolar disorder doesn’t exist in children, bringing about negative criticism that our children just need to modify their diet, be raised by better parents or be given a good spanking. For those with the naive opinion that we’re lazy parents using drugs to make our job easier and that our children are just spoiled brats, I have the following to say... you have no idea!

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I find all these articles very frustrating. My son has a real mental illness. We are not bad parents. We have tried many things to help our son get better, but it wasn’t until we tried medication that we started to see a positive change in his life.

My son knew at the age of 7 that he had a problem in his brain, after wanting to kill himself he cried that he wanted to see the doctor so they could fix his brain. My son has suffered depression, rapid mood swings (he would cry, then laugh, then cry, then laugh until he would slam his head into the ground begging through tears to help make his brain stop changing moods all in a matter of 1 minute). He has seen monsters for episodes that has lasted up to 30 minutes, ending with him vomiting. He has heard voices and seen shadowed men coming at him when having panic attacks and has punched himself in the face to stop the images in his brain. He has trouble sleeping, feels too much energy and has violent rages attacking his family, sometimes up to several hours. He suffers from great anxiety that keeps him from playing with other kids and his sensory issues that keep him from enjoying family outings and fun experiences.

He says he feels worthless and that he’s God's mistake.

He has seen professional therapists and psychiatrists and to this day we don’t have an official diagnosis other than “mood disorder”. My son is being treated with bipolar medication and with the recent addition of Lithium, we’ve seen a tremendous change in our son. My husband and I both feel like we have our old son back. But I think our son can share the remarkable change in his own words:

“I feel happiness for the first time in a long time.”

“I no longer feel anger inside.”

“I feel great Mom!”

My son’s story is one of many. We are parents that love our children deeply, we recognized that our children need help that no diet, religion, parenting methods, exercise, fish oils, etc. can fix alone. We know, because we tried. Most parents are terrified of putting their child on medication and from experience I would say that most wait too long. We resisted it because of the bad press and judgments of society. Parents need support, not judgement.

You have no idea the hell my son has lived through. Please withhold your judgement.

I don’t know what will be my son’s final diagnosis, but I do know that I am thankful that he has an opportunity to have a life worth living thanks to medication and a mental health community that is trying to help our son in a time where answers are still outside our reach. We hope that within his lifetime we will have better solutions with less side effects, in the meantime, we will treat the symptoms and embrace the beautiful smile that has returned to my son’s face.

Friday, July 8, 2011

Yippee!! We’re there!

We took our son in for his blood work after 5 days of being on Lithium and just found out that he’s now at therapeutic level. Which means, we don’t have to increase the dose since we’re already seeing results at this level. The great thing is that we haven’t even seen the full benefit of this level since it take 4 weeks to see the results, so we can’t be more happier than we are now.

As for my son, he says he doesn’t feel anger inside anymore and is engaged with the family like never before. He has faced several moments of unmet expectations and handled them better than ever. We’re fortunate that he’s not slowing down or appearing drugged, instead it appears he has come to life. He has been full of happiness, enjoying lots of activities and being very creative. I wouldn’t say things are prefect, but that isn’t our goal, we just feel like we’re seeing our real son for the first time in a long time. Praise God!

(smiling ear to ear)

Wednesday, July 6, 2011

Sweet Little Moments

The last two days I’ve seen something spectacular. It’s a small thing, yet has the power to move mountains. My son has decided to be nicer to his little brother so they can have a better future together.

Since my youngest was 3 years old, he’s witnessed a lot of violent rages from his older brother. Overtime, this has created an unhealthy dose of anxiety in him. I can’t even count the number of times I’ve seen my little one scream with great fright, while covering his eyes, trying to block out the scary stuff he’s seeing.

As a playmate, he’s also had a lot of moments turn bad when his oldest brother takes charge and becomes unfriendly or has destroyed his personal stuff. As a result, my little one has mastered the art of walking on egg shells and tends to overreact to small stuff since he’s always prepared for the worst to happen.

Just yesterday my oldest was becoming mildly upset when it was time for him to be sunscreened (it’s a sensory issue for him). As he started to raise his voice in objection, my little one screamed, “OH NO!!! I don’t like it when he gets angry!” as he stormed out of the room with fright.

My son seemed to recognize, maybe for the first time, the impact he has on his little brother and decided right then to do something about it. Within 15 minutes, we were at the pool where my oldest took my little one under his wing and for the next hour, poured into him with love and tenderness.

When I mentioned how pleased I was too see him being so kind to his little brother, my son replied, “I want to try real hard to be nice to him so that he won’t be afraid of me anymore and to help give us a better future.”

Melt my heart...

Tuesday, July 5, 2011

A Celebration Without Explosions

We just finished up a great 4th of July celebration with our family. My son is now 4 days in with the new Lithium medication and so far things have been going really good. The only side effect we’ve seen is that he has to drink a lot more water since the Lithium increases his thirst and with that comes more trips to the bathroom. Thankfully this is no big deal, even for my son.

Over the last few days, my son has expressed several times how amazing it would be if this medication worked, I wish you could see his gorgeous smile as he shares how good he’s been feeling and how hopeful he is.

I know it may be way too soon to tell if this is an effective medication for my son, but I noticed several instances this weekend where he would typically explode, but instead, he was able to come back down from his stress. Especially today, with all the loud, unexpected noises of the 4th of July, my son had some moments of anxiety, where I was expecting him to lose it, but he didn’t, instead he was able to calm down using basic methods, such a taking a deep breath to regain control of himself.

I have to say, it was a special day to have fireworks being the only thing to explode!

Happy 4th of July everyone!

Friday, July 1, 2011

Starting Lithium

We just got home from our appointment with our psychiatrist. I feel pretty good about it. I felt for the first time that our doctor recognized the severity of the situation and even acknowledged that it could be bipolar disorder. In fact, that was the only disorder really discussed. He didn’t feel that this was depression with anxiety, like he mentioned in the past, but recognized that he may be experiencing mixed states. He also acknowledged that all the rages and complaints of “too much energy” was possibly a sign of mania. I was also glad that he was able to weigh in on the rapid mood shifts from crying to laughing, saying that he didn’t think this was caused by his current medication, but instead a symptom of his disorder.

So the next step was obviously adding more medication to treat the symptoms. He made sure we were aware that we needed to get this under control before he gets bigger and risk the possibility of having to live outside of our home or have to change schools where he would be exposed to more troubled kids.

Looking at the next two options of either adding a second mood stabilizer or trying another antipsychotic, he encouraged us to add another mood stabilizer. Since we’ve already tried Depakote, which he had an allergic reaction to, and Lamictal which he had side effects, he suggested we try Lithium. He explained that it was very successful with adults suffering from bipolar disorder and didn’t have the possible side effects of agitated moods that we saw earlier with the antipsychotic. The downfall is the regular blood work that is required to monitor the Lithium levels in the blood. If too low, it becomes ineffective, but if too high, it becomes very dangerous. As the child grows, the levels need to be adjusted and monitored. Of course, like everything else, there is a list of side effects, but we need to move forward because he can’t continue where he is now. Our son is asking for help.

So today we started Lithium and the first blood test is in 5 days. He’ll have a blood test after every increase until we get to the therapeutic dose. Then after that, he’ll get checked a few times every year, unless there is another increase, then yep, more blood work.

I can say I feel pretty good about this next step. What if it works? I’m thrilled to think that my son may get his life back. I thought it was encouraging when my son said, “Maybe I’ll be able to raise my hand again in school, I haven’t done that since the first grade! And maybe I will be able to fit in with the boys at school and I won’t be all alone at the school parties.” Even though I’m nervous about this next step, I think we’re all feeling a little optimistic.

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I want to thank you all for being so supportive and providing me so much feedback. I have read many of your comments several times as I prepared for this appointment and feel so blessed to have you by my side!  
(((Big hugs to you all)))