Friday, December 30, 2011

Suicide in Teens

Dr. Kay Redfield Jamison speaks about suicide in teens.

This past summer I had the devastating experience of attending the funeral of an incredible young man I knew who died from suicide. He wasn’t the only boy in my small town to die from suicide this year, 2 other young men from the same high school did within months of one another. Their story is not mine to tell, but as a parent of a child who has wanted to die, their stories hit very close to home, so much so it rattled the walls of my heart.

Last night I was overcome with this fear, the fear of losing my son to suicide. I try to avoid such thoughts, but every once in a while the worry creeps into my mind, usually when I least expect it, I get emotionally knocked over and I feel the air get sucked out of my lungs.

I know that we’re doing everything possible to help our son avoid such an outcome, but I also know that as each year passes, he’ll gain more freedom and I’ll lose more control. I know it sounds ridiculous, but with him being so young, I feel like I can prevent this outcome, I can monitor his moods, follow his actions and support his care. But one day, he’ll leave my nest and go through his symptoms alone. How will I know that he’ll be ok? What happens when he becomes depressed and there’s no one there to support him? What happens if he refuses to take his medication? Or doesn’t get his prescriptions filled properly? How will I protect him?

I think to a degree all moms feel this way when their children grow up and move on, we worry about their safety, that they’re making mature decisions and so on, but with my son’s mood disorder, my worries feel justified.

Thankfully we both have time ahead of us to mature and adapt. In the meantime, I’ll be teaching my son how to monitor his symptoms, how to responsibly take and manage his medications and the importance of working with his doctors. I also need to work on trusting God, letting go of what I never really controlled in the first place. 

Thankfully I still have some time to grow up.


* * *


If you or someone you know is in immediate danger because of thoughts of suicide, please call 911 now.

If you are outside the US, call your local emergency services.

If you are not in immediate danger because of thoughts of suicide, but need someone to talk with about your suicidal feelings, please do not hesitate to call one of the following national suicide prevention lines:


1-800-SUICIDE (1-800-784-2433)

1-800-273-TALK (1-800-273-8255)


You are loved and you matter!


* * *

Video Source:
Uploaded on YouTube by  on Oct 5, 2010





Tuesday, December 27, 2011

Glenn Close Speaks Up About Mental Illness


Video above: Interview with Glenn Close and her sister who has Bipolar Disorder


“Mental illness and I are no strangers.”  — Glenn Close

Over Christmas I came across this inspirational article written by Glenn Close. In the article, she shares her personal experience with mental illness in her own family and discusses the stigma of mental illness and the cost to keeping silent. She also shares some interesting insight on how Hollywood portrays mental illness in the movies and how these images continue the stigma that exists. In the end, she leaves us with the question about mental illness, “...will we face it with open honesty or silence?” I know this is a question that only you can answer, but it’s worth the consideration.

Read the entire article here:
Mental Illness: The Stigma of Silence
http://www.huffingtonpost.com/glenn-close/mental-illness-the-stigma_b_328591.html

* * *

References:
HuffPost
By Glenn Close
Mental Illness: The Stigma of Silence
Published: Oct. 21, 2009
Consulted: Dec. 27, 2011

Video:
Posted on YouTube by on Oct 21, 2009

Sunday, December 25, 2011

Merry Christmas!

This morning my son woke us up at 4:30 am, he said his melatonin stopped working and he was too excited for Santa. By 6 am, I found him seated on my bedroom floor watching my alarm clock, waiting for the golden hour of 6:01 am when the boys were allowed to wake us up for Santa gifts.

After the boys ran downstairs to see their gifts, my middle son declared with joy, “Somebody must have been really good this year!” I couldn’t agree more!

Over the last few days, we had many family gatherings including church and Christmas dinner at Grandma’s house. My son was such a trooper. He had a few moments of feeling overwhelmed, but after taking steps to distance himself on his own, he was able to join back into the fun. Honestly, he did much better than I expected, I was pretty proud of him for being so flexible with his lack of sleep, tons of excitement and a few too many cookies.

Tomorrow we’ve planned a day of rest, our hope is to recharge our batteries with a family jammie day and hopefully a lot of cuddling on the couch. I have to admit, even this mama bear is feeling worn out.

Merry Christmas to all and to all a good night!


Thursday, December 22, 2011

The Horror Inside His Head

Yesterday my son had another unusual episode, it only lasted about 7 minutes, but was intense nonetheless. After a friend left from a long play date, I found my son crunched into a ball on the couch with his head tucked under his arms.

As I approached him, I asked him what was wrong, he seemed to tighten up to the sound of my voice and scurried to hide his head like he was afraid of the air around him. He whispered in a panicked voice, “I don’t feel safe.”

I gently asked if I could hold him to help him feel safe and he responded, “yes.”

I slowly pulled him close as I felt the intensity of the moment. It literally felt like a bomb would explode if I moved the wrong way or spoke too loud.

After several long moments he abruptly pulled away and scurried to the other side of the couch, returning to the balled up position. I heard him say something with his quivering voice, but it was too soft for me to understand. As I approached carefully, asking him to speak louder so I could understand, he clinched his muscles and tried to bury is body deeper into the couch.

I asked again, “What’s wrong, can you tell me what’s happening?”

This time he quickly retreated farther down the couch as he choked out the words, “Stay away, I want to hurt you!”

We sat in silence for a few minutes, waiting for this moment to end.

I prayed.

Slowly he started to rise, almost like a person who had fallen asleep and was waking up fresh again.

Within minutes he was back to normal and ready to go to the store.

I was concerned about his behavior but relieved it was short lived. I was also thankful that he was able to recognize his desire to hurt me and was acting in such a way to protect me, it gives me hope that as he gets older he will continue to gain more control and recognize his symptoms as they approach.

* * *

This morning I asked my son about the episode and what he remembered. He explained that he pulled away because he was having a bad vision. When I asked what he saw he said, “I saw me stabbing you in the stomach”.

Of course, I called our therapist to discuss this and he explained that it’s very common for those with mood issues to have very vivid thoughts. In the case of my son, he was feeling a lot of anxiety and fear, as a result, his brain made up the vivid thought to match with the feelings his body was experiencing. This is different than hallucinations, instead, it’s the brains way of making sense of why it feels the way it does, it’s his imagination filling in the blanks. Compare this to you hearing a strange sound downstairs and imagining that someone is trying to break into your house, for him, these thoughts are a lot more vivid and not based on anything in reality, but rather his fight-or-flight response being ignited by the chemicals in his brain. Thankfully, he explained that we shouldn’t be concerned that he would ever act on these thoughts.

Having been there when it happened, I can confirm that he wasn’t aggressive and I never felt threatened, it was clear that the horror was inside his head, if anything, it was sad to see him so frightened in a place where he should’ve felt safe.

Tuesday, December 20, 2011

I’m a Work in Progress

Well I’m still working on being “present”. It’s pretty easy when things are going well, in fact, I’m enjoying life a lot more when I do. But it remains a challenge when things aren’t so good.

Yesterday my son woke up at 5 am and couldn’t go back to sleep. This is highly unusual for him and indicated that his moods may be off. Then about mid-morning he came to me with a bright look on his face and said, “I feel like I want to fly!” He then went on to say that he couldn’t stop thinking about it. He said that he couldn’t even look at the sky because it made him want to fly. As he was explaining this to me, he started to laugh, then his face became distorted with confusion and he started to cry. From that point on we discussed that his brain was making mistakes and that it was important that he didn’t follow through with these impulses. He agreed and said, “Yeah, if I jump off the balcony I will hit the cement and die.”

His urge to fly slowly diminished as the day went on with the exception of a few moments in the evening when his moods keep changing in his brain and he began to hit his head on the couch arm to make it stop.

The other challenge yesterday was trying to get him to do his math homework, yes, my son was given a packet of math homework to do throughout his vacation–big bummer! It didn’t go so well and I found myself asking... how do I be in the “moment” when the experience is something I want to escape.

Then I remembered the email I got the very same day from my pastor:

...When our pain was the most intense, all I wanted to do was escape from the “now”. But the irony is that what I needed most (God’s peace, comfort, power) I could only experience in the “now”.
So this translated into looking for Jesus in the pain instead of running away from the pain.
Being present in pain is so difficult. I admire anyone who is willing to hang in there. I pray that the coming weeks, even if painful, are filled with the fullness of God’s presence.
The full supply of grace is here, now. I pray you and your husband remain soft-hearted and desperate enough to receive it. 

So rather than trying to escape the moment, I prayed, I asked God to help us and to help my son. I simply tried to lean on God to get me through it. I felt comfort in that. Then in the next moment, I tried to move forward without holding onto the past.

This unfortunately doesn’t come natural for me, but I’m trying, I’m definitely a work in progress!


Sunday, December 18, 2011

A Message to Remember

It’s the final week before Christmas and if you’re like me, I still have things to wrap, cookies to bake and a lot of chores to complete, all while maintaining peace in my home. It’s so easy for me to get caught up in all the details that I miss out on the big event, can you relate?

This Sunday my pastor gave a timely message about being “present”. He reminded me that it’s in those moments that we experience God, not in the past or in the future, but in the moment that’s right before us. If I can just slow everything down and be thankful for everything God has blessed me with, I will experience real joy, the kind of joy that only comes from God.

So this week I really want to do this, I want to let go of the past, stop thinking about the future and just be present with God, to see all the wonderful things that He’s placed into my life. Such as, my husband that faithfully loves me and supports me, sacrificing for his family and honoring God with his good character. My oldest who’s experiencing stability for the first time and remains optimistic after all he’s been through. His resilience alone is miraculous! My middle child who at 9 years old stood before his church today and prayed for adults asking for prayer. His heart and compassion are a true blessing from God. And my little one who’s needs are small, reminding me that my presence alone is enough for him, as he hugs me and climbs into my lap whispering “I love you”.

I don’t want to miss out on anymore this Christmas season, so I’ll start by opening my eyes with a moment of gratitude. I am thankful, so very thankful...

* * *

Tonight, while taking my middle son to Christmas shop for his brothers, I made an effort to be in the moment. I unplugged my phone and followed his slow, thoughtful pace. As we were leaving the store with packages in hand, I heard my son softly say, “I can’t wait to give my brothers their gifts, I’m so excited, I feel my heart getting warm inside.”

Had I hurried my son or checked my emails, I would’ve missed out on one of my most favorite moments this season.

* * *

If you’re like me and have a hard time being “in the moment”, here are a few suggestions from my pastor:

• Count your blessings, write them down!
• Recount your “highs” and “lows” of the day as a family, see what really mattered at the end of the day.
• Take pictures to become aware of those precious moments surrounding you.
• Start out your day with a prayer of thanksgiving.
• Receive Communion.


Thursday, December 15, 2011

Fighting the Stigma of Mental Illness


(Above: Lets Erase the Stigma Video)

Robert Villanueva
Today is Part 2 of my interview with Robert Villanueva. In my last post, Meet Robert VillanuevaRobert shared about his personal experience of “living well with bipolar disorder”, today he shares with us the organizations he’s involved in to help fight the stigma of mental illness. I can’t be more thankful of Robert and advocates like him who bravely put a face to mental illness, who stand up for those who aren’t able to and for fighting to make a change that will help all of our children. If you haven’t already, check out the links below and see for yourself the organizations that are working to make a difference!

Can you tell us about the organizations you are involved with and what your role is?
First let me start by saying I really like your comment “fighting the stigma of mental illness” because it really is a fight across the globe. Many strategies have been used and unfortunately we have been losing those battles. People like you and I are going to make a difference in winning the war against the stigma of mental illness. So let me share some information about the organizations I work with.

NAMI

National Alliance on Mental Illness: www.nami.org
I am currently a national Trainer of Trainers for their “In Our Own Voice” program. IOOV is a public education presentation that is interactive with its audience, presented by two consumers/people diagnosed with a severe mental illness along with a 15 minute video. I was fortunate enough to be asked to be filmed for the video that is shown across the nation. Sometimes it can be intimidating to see myself on a huge screen with a big ol’ head. (LOL!) I also get the opportunity to represent NAMI in the greater Bay Area as a public speaker for events such as Stanford Education Days and other mental health events at universities.

LETS

Let’s Erase The Stigma, An Educational Foundation: www.lets.org
For the last year I have been on the ground floor of a new non-profit based out of Southern California that reaches out to the student population opening up discussions about erasing the stigma of mental illness. My role in this process has been to help create infrastructure, policy, guidelines and strategies to further the vision of being proactive in education of mental illness. I have found a real passion in seeing the student population embrace the idea of having LETS clubs on their campus. My current title is LETS Assistant Research Director. This position has included development and implement pilot research data.

A2A

Adversity 2 Advocacy: www.adversity2advocacy.org
I currently sit on the Board of Directors for A2A. The vision of A2A is “the empowering process of turning one’s adversity into advocacy on behalf of others facing similar challenges”. My challenge of living with the diagnosis of Bipolar Disorder is showcased on the main website. The stories talk about individuals that hit a stage of recovery and are able to advocate for others to help them reach a state of recovery. Part of this process has been being on the team of creative people from a diversity of sectors that have a heart for individuals and families struggling with adversities. The founder, Jeff Bell, is a friend, colleague and inspiration to myself and others at A2A.


What made you decide to go public with your mental illness and focus on fighting the stigma?
The actual moment I decided to go public and share my story was at a peer support group. It was an epiphany when I saw a women crying, shaking and terrified that their co-workers and family may find out she was diagnosed with Bipolar Disorder. I noticed others in the room consoling her and telling her not to tell anyone because they wouldn’t understand. At that moment I realized that if we were ashamed of having a disorder, then how can we expect others to understand or accept us. I didn’t want to live in a world where I had to be ashamed of having a “physical illness”, “brain disorder” or “chemical imbalance”. I couldn’t imagine the stress of keeping that secret every time I went to work, saw my family or hung out with friends. So my solution was to let people know out right if the subject came up that I was diagnosed with Bipolar Disorder 10 years ago. It takes the pressure off me and in most cases opens up dialogue with others about mental illness.

How long have you been working as an advocate for mental health? 
It’s hard to believe, but I have been an advocate for about 8 years now. It started by talking to others in peer support groups and eventually becoming a facilitator of peer support groups. I had the opportunity to become an IOOV Presenter and a year later was asked to become a California State Trainer for the IOOV program. Shortly after, the same year, I was invited to St. Louis to become a Trainer of State Trainers. It is really awesome to meet people from across the nation that have the same passion and goal of helping others by telling their own story. Along the road I have spoke at prestigious universities (Stanford, Cal, Temple) across the nation and abroad in the UK. I guess you can say that not “keeping my mouth shut” has helped me get stable, live in recovery and flourish in the advocacy work I do.

Can you tell us about the goals you have for the programs you’re involved in?
Currently I spend a lot of time, energy and brain power on LETS and A2A.

LETS is going to change the world one club at a time. We are working with an amazing team around the nation to take a new innovative approach to erase the stigma of mental illness. My role is to measure the outcomes of the clubs using pilot data that includes surveys, questions and demographics of the clubs. We are working towards funding further research, educational programs for students of all ages, and mentoring opportunities to LETS Club members.

We have neglected the needs of educating our children about the devastating effects of mental illness on individuals, families and the community at large. In a recent, not yet published study out of Cal Berkeley, we found that attitudes towards people living with a mental illness is reported 6% more negative than a decade ago. For the first time, we are reaching out to students and asking them “can you help us erase the stigma of mental illness?”. They have given us a new hope, tons of energy and a new avenue to break down the walls of stigma.

A2A is an online non-profit that is dedicated to showcasing the amazing stories of triumph and inspiration. The website features individuals that have lived with or are living with lung cancer, ALS, schizophrenia, bipolar disorder and stroke. These individuals are a small example of advocates that want to help their peers achieve a good quality of life through service, education and cutting edge research. We know that when we help others, we are helping ourselves. A2A will connect people who have experienced full recovery to those who are currently experiencing an adversity, in the hope that we can then get them involved in advocacy and be an inspiration to others.

The number one question that I get is “how can you do what you do?”. My answer is “I have know idea”. Only by my faith, the kindness of others and the advocates that paved the roads ahead of me have I had the opportunities and adventures that I have had. And what amazing adventures I’ve had...

Thank you so much Robert for doing what you do, you truly are paving the road for the next generation and Moms like me thank you from the bottom of our hearts!

If you’d like to reach out to Robert with feedback or questions, leave your comments below, he’ll be checking back to read your responses and if he’s anything like me, he loves to read the comment section, so don’t be afraid to chime in ; )

* * *

NAMI: National Alliance on Mental Illness
www.nami.org

LETS: Let’s Erase The Stigma, An Educational Foundation
www.lets.org

A2A: Adversity 2 Advocacy
www.adversity2advocacy.org


Video Provided by:
Uploaded on YouTube by on Jun 19, 2011



Tuesday, December 13, 2011

Meet Robert Villanueva


Today I’m so excited to introduce you to a inspirational man who in his own words is “Living well with mental illness”. His name is Robert Villanueva, a National Trainer of Trainers for NAMI and the West Coast Regional Director of LETS (Lets Erase The Stigma). The first time I saw Robert was in a YouTube video for “In Our Own Voice”, where he shared some thoughtful questions about the stigma in society and how those living with mental illness are affected. He also gave a face of an adult who was living with Bipolar Disorder when at the time I didn’t know what that would look like other than images of famous people having public meltdowns. For me it was very encouraging and gave me so much hope for my son. 

Since that initial video, I’ve had the opportunity to hear Robert speak on behalf of NAMI at Stanford’s Annual Mood Disorders Education Day the last two years and this past year I met him in person. Today, Robert has graciously agreed to meet with us and share his story in a 2-part post. Today I’ll be asking questions about Robert’s story and later this week we’ll continue this interview with another post about the programs Robert is involved in and his journey to fight the stigma of mental illness. I like to think of Robert and others who are publicly fighting the stigma of mental illness as soldiers who are fighting for our children’s future! Thank you Robert for making a difference for families like mine and bringing hope to the next generation!

* * *

Welcome Robert to my blog, I’m so excited to share your story and the role you’re taking in fighting the stigma of mental illness. To start, can you share a little about yourself?
I grew up in the East Bay and attended Castro Valley High School. Home was very ruff but I had some great teachers and coaches along the way. After graduating, going to college was a distant dream, due to unstable parents and the need to move forward in my life. I chose to coach wrestling and found a job as a garbage man... fast forward to my early to mid-twenties, as stated in the magazine “One in Four ” published in the UK, I would be considered an all American guy. Good husband, loving step-dad, coach, in great physical shape and all around friendly guy.

When did you first experience symptoms?
At the age of twenty-eight is when they started to disrupt my life. Looking back, I am sure I experienced bouts of depression and manic episodes. Being a father, husband, active member of society, the symptoms started affecting all aspects of my life. My family suffered the most during those years. I missed work, was not as loving and emotionally unavailable to my wife and kid.

What mental illness have you been diagnosed with?
I was originally diagnosed with clinical depression at the age of twenty eight. Later at the age of 31, while locked in a psychiatric unit, I was diagnosed with Bipolar Disorder.

How do you manage your illness?
I start every day with making my bed. There was a time in my life when I was in that bed 16 hours a day and didn’t see my friends or relatives for two months. My first step back to health was to make my bed, I knew that I was too lazy to make it again and get in the shower. Other days I was in such a hurry that I would start heading to the shower but then stop and tell myself “take the time to make your bed”! It sets the consistency on a daily basis that I need to remind myself how fortunate and blessed I am that I have a nice warm bed to come home to. Now I have seven pillows, shams and a Winnie-the-Pooh pillow that I have had since the day I left my family and lost my home.

Did you always know that something wasn’t right or did it come out of nowhere?
It was progressive but unnoticed by me. Later after the diagnoses, people came to me and said that they had suspected it for a while. My reality was going a thousand miles an hour or crashed like a log. It was the only life and reality I knew.

Do you have a family history of mental illness?
Great question! After I accepted my illness and became more educated, my family history showed a destructive blueprint of mental illness. At the time I did a study on my family history, I discovered that the longest a male survived through four generations was to the age of fifty-eight. At that time, the oldest male cousin was 42 and I was 33. My mom was diagnosed with Manic-Depression in the seventies and now we know it is Bipolar Disorder. Unfortunately she chose to self-medicate with drugs and alcohol.

As a man, what unique struggle did you face in coping with your illness and getting treatment?
I had no one to talk to, identify with, mentor me or even tell me where to get help. I am a very tuff guy, physically fit, hard worker, so the illness put me on my knees and weakened me physically, emotionally and took away the ability to support my family. The stigma and shame were the worse. I was experiencing clinical depression and lack of energy, not a girly-man sitting in the corner crying and feeling sad. (My horrible attempt at humor—hope I don’t offend anyone).

How do you get support today?
I start by making my bed. Support comes in many forms for me. Listening to close friends and mentors who give me help and feedback on decisions I make. Accepting the help and kindness of others. Being involved in the advocacy work on a daily bases. Doing this interview, flying over seas, being involved with great organizations such as www.lets.org our www.adversity2advocacy.org And recently I have been blessed by an amazing woman who agreed to be my loving wife :-).

Obviously you’ve gone public with your illness, but do you tell everyone?
No, but yes! Like any conversation, it depends on the depth or situation. I have found that how I disclose makes all the difference in the world. I use to say I have a brain disorder, chemical imbalance, suffer from Bipolar, or I am Bipolar. (I wouldn’t say I’m nail fungus if I had just been given meds for nail fungus) Now my standard smooth answer is “I was diagnosed with Bipolar Disorder ten years ago”. People don’t react like before, but become very interested in sharing stories of people that they know that have psychiatric illnesses. They see you as a healthy individual that is dealing with an illness, accepted it and is moving forward with their life. It’s really cool to take the power back from dropping the bomb!

Do you have any regrets with going public? 
I still have to appear on Oprah or the dreaded Doctor Phil to officially go public. Dr Oz would be great :-). I do not have a regret in the world about sharing my story. I don’t always do a great job or reach an audience the way I would like to. But my Grandma always said “do the right thing and God will know.” I feel I am doing the right thing for all of us and the next generation.

Have you yourself faced any challenges with the stigma of mental illness?
That is a big YES! I was ashamed that I was sick. I experienced the worst kind of stigma which is self-stigma. I limited my self worth, personal goals, friendships, romances, jobs and the list goes on. But it was seeing a women in our Peer Support group that was terrified to have her family find out that she was diagnosed with Bipolar that changed the way I now deal with stigma. She was crying, shivering, breaking down that she had to go back to work and that her co-workers may find out. The group consoled her and told her not to tell anybody. I couldn’t imagine this sweet person scared every day at work, every holiday. So I stood up and said “I will tell anybody because I don’t want to live in that fear and if we don’t tell our story, then we only perpetuate stigma!!!”

What have you learned through your journey?
The truth will set us free! Education is power to heal and move on! The kindness of others is the catalyst of recovery! The more I can help others, the healthier my life has become!!

What advice can you give parents who are raising kids with mental illness?
During my talks, that are very interactive with the audience, this is always the hardest question. I vividly remember a father, close to my same age, with tears welling up in his eyes, ask me “what can I do to keep my daughter from hurting herself?”. I replied “I don’t know, I wish I did”. That Sunday as the tears dropped down on my Bible during the music at service. I found an answer, not THE answer, but an answer, that kids and parents need to be educated, supported and involved before a crisis ever happens. So my answer is “get involved with the Lets Erase The Stigma educational foundation (lets.org)” and bring mental health education from the bottom up from our students, to parents, teachers, administrators, on up to the president himself. It is student run, all inclusive to the student body and it creates a sense of support, empowerment and community on campus in support of breaking down the walls that stigma builds.

Thank you again for giving me a platform to open much needed conversations about mental illness.

I wish you the best of health to you and your family.


* * *

Check back for my next post as Robert shares about the organizations he’s involved with and how it can help our children!

Robert’s YouTube Video:

Photo Credit:
Adversity 2 Advocacy




Sunday, December 11, 2011

Holiday Stress

If you’re a mom multi-tasking during the holiday season, you’re likely to suffer from some holiday stress. I think I have a full blown case of it and I’m certain it’s contagious. Which is exactly why I’m trying my best to find my calm. I have so many things to do with so little time and the more stress I have, the more stress I spread to my family. 

I particularly notice that my oldest son is extra sensitive to my emotional state. He has a tendency to read my emotions, even when I’m trying to hide my stress, if it’s there, he can pick up on it. Which can have a negative impact on his stability. 

So my first line of defense has been prayer. I’ve been doing more of that lately. Tonight I also went on a date with my husband to reconnect and push my work to the side. I’m also trying to focus on “one day at a time” and exercise regularly. But I know the week ahead will bring many more obligations and once the kids are on vacation, everything gets more challenging. 

So, what are you doing to find your calm in the chaos of the season? Please share!

Thursday, December 8, 2011

Brutal Instincts

Things have been going really good, in fact pretty great this week. I thought that would be the topic for my post, but this afternoon my son had too much stress and couldn’t hold it in anymore. Whether it was the fractions in math, the late start to homework due to an after school activity or the hurt feelings between school friends, whatever it was, I became the target for his meltdown.

It seems to be instinctual for my son. When he can’t take it anymore and he feels he’s lost all control of the moment, he tends to react by threatening to hurt me or damage his brother’s stuff. It seems to be his desperate attempt to regain control. I laugh now, but today he even used his aromatherapy sprays to spray my eyes, something we bought to help him relax became his “weapons”—yes he had more than one bottle in his hands! During this moment I can see a glimmer of happiness on his face as he terrorizes his brothers or hurts me, but it’s fleeting when he realizes that it doesn’t rescue him from his awful feelings inside.

The end result is me holding him on the floor for 30 minutes as he kicks and tries to wrestle away, waiting until he returns to normal. I tried to offer solutions such as taking a shower or leaving the room to decompress, but for him, he seems to desire a fight, if I let go, he immediately rushes to throw something at me or break his brother’s stuff. It’s obvious that his “fight or flight” response is fully activated. Unfortunately for me, there’s more “fight” than “flight”.

Other than meds that are used to prevent these situations, I don’t know what to do when we’re in the moment. The therapy of “practicing going to your room when you’re NOT upset so it become more of an instinct when you are” doesn’t seem to work for my son. And the ironic thing is that, the more stable he is, the more unprepared I am when these situations arise. I really feel at a loss tonight.

Can anyone share how you redirect your child when their instinct is to harm you?


Tuesday, December 6, 2011

Postponing the Inevitable

Well we’ve come to a decision about my son’s biopsy and whether to have it done next week with our current HMO or to wait until we’re with our new HMO. There are pros and cons to each side, but in the end, we decided to wait, allowing us to have the procedure done closer to home and reduce the amount of stress our son will be exposed to.

The decision became much easier when I got a call from the nurse today and was told that my son couldn’t have any food or water after 5 AM until the procedure was complete. That would be another 8.5 hours of fasting, along with traveling 3 hours into the city. We also found out that we would have to wait an additional 8 hours after the procedure until we could go home, getting us home around 2 am. It simply is too much for him to go through if we can avoid it.

After many calls, it looks like we can. If we make the switch to the new HMO, I was told that we could get an early appointment, allowing him to do most of his fasting in the night while he’s sleeping. In addition, the commute will be drastically reduced. I also spoke with our current nephrologist and he confirmed that we could safely wait to have the procedure later.

In the meantime, I’m getting files transfered and trying to get an appointment in the books with the new nephrologist by having the two doctors talk over the phone. Our current doctor will make the call sometime this week. In the meantime, I already have the first appointment in place in January with his pediatrician to request the referral. I think I’ve done all that I can, I’ve talked to everyone involved and it seems like this should be a smooth transition.

Honestly, I know there are no guarantees, it could get really messy, but I have to make the best decision with the information I have. And since I’m being honest, can I say that I am so tired of making important decisions, it seems there’s always another one around the corner.


Sunday, December 4, 2011

Gene that Links to Suicide Risks

Recently I came across a news article that reported that researchers have found gene variations that are linked to one of several factors affecting suicidal behavior. According to the article, “90% of people who have died by suicide had at least one mental health disorder, including schizophrenia, depression, bipolar disorder or general mood disorders.” This research is essential for our children, if they can target a gene to prevent suicide, we can save so many young lives. I’m excited to see where this research will lead. I’m confident that in my son’s lifetime we’ll have so many more answers and treatment options. I’m so grateful for the work that’s being done in the field of research, it is our future!

Read the article yourself to get all the details!
http://www.medicaldaily.com/news/20111007/7337/suicide-mental-health-gene-variations-bdnf-brain-derived-neurotrophic-factor-mood-disorders-sch.htm

* * *

References:
Medical Daily
By Medical Daily Reporter
http://www.medicaldaily.com/news/20111007/7337/suicide-mental-health-gene-variations-bdnf-brain-derived-neurotrophic-factor-mood-disorders-sch.htm
Published: Oct. 7, 2011
Consulted: Dec. 4, 2011

Thursday, December 1, 2011

More Decisions Ahead...

Tonight I came home from the gym and my son came up and gave me the biggest, longest hug. It was fantastic! I’ve noticed that he’s doing so much better now that he’s back in school. I think we all realized the strain that Thanksgiving break caused, it was a whole week off with a lot of boredom, which unfortunately leads to trouble. Anyone else experience this with their child?

Now that things are going smooth again, we’ve been busy trying to decide whether or not to do the kidney biopsy in a week and a half (our current appointment) or wait to do it with our new HMO. The advantage of waiting is that we won’t have to travel 3 hours out of town to a major city for the procedure, instead, we’ll be much closer to home. Our concern with this trip is that after my son has the procedure, he’ll have to spend another 4 hours in the hospital, making it a whole day event. When we head home, he’ll be coming off the medications used to put him under. In the past, after his MRI, we had the opportunity to see that this transition can be very unsettling, bringing out cycling moods and intense anger or sadness hours later. My concern is that we’ll be stuck in city traffic, 3 hours from home and he’ll become unstable. Not fun!

The downfall of having it done with our new HMO is that we’ll have to jump through several hoops to get our referrals and approvals set in place. Delaying the needed procedure. Also not fun.

Hmmm... decisions, decisions...


Tuesday, November 29, 2011

Get the Family Together for Fun!

Trying to play a family game with a child who has mood issues can be a challenge for the whole family. My son can easily get stressed out or too competitive, taking away any enjoyment possible. But over the year we’ve found great success with the game Hedbanz. It’s a simple game that has an easy flow without a lot of complicated rules. If you’re out looking for a family game for Christmas this year, I highly recommend it!

Sorry if this is starting to feel like an advertisement, I promise you it’s not, I’m just excited to share something that works! I’m not much of a game girl, I get way too impatient, but this game was a blast even for me.

To play, each family member wears a goofy headband around their forehead then they stick a game card into the headband with the image facing out. It’s completely ridiculous looking which adds to the fun of the game. Then each person takes a turn with a sand timer asking questions about what they may be (the image in the card). So I may ask:

“Am I a food?”

“Am I an animal?”

The family can only respond with “yes” or “no” answers. Once you get a “yes”, you can narrow your questions to a more specific area.

“Am I an object?”

“YES!”

“Am I an appliance?”

“Am I a toy?”

“Am I a ball?”

You have until the timer goes out to guess what you are. If you guess right, you earn a point, if not, it’s the next person’s turn. For kids that easily feel defeated, it helps that you get to continue with your same card on your next turn, no starting over until you guess right. I love that you can narrow the game to be short or long. In some cases we declare a winner after someone guesses correctly 3 times, other games we play longer.

This is one of those games where you spend more time laughing than anything else. My kids love it and it seems effortless for my son. It’s a great way to get the family together for some low key fun.


Here it is on Amazon (You may find it cheaper in Target):
http://www.amazon.com/Spin-Master-Games-6014346-Hedbanz/dp/B003AIM52A/ref=sr_1_1?ie=UTF8&qid=1322620946&sr=8-1


Sunday, November 27, 2011

The Decision is Made

Well the holiday is over and now it’s back to serious business. Our pediatric nephrologist has made the final decision to do a biopsy on my son’s kidneys to evaluate the damage that has taken place over the years from his kidney reflux (a birth defect), allowing all doctors involved to make the best decision for my son’s care.

I’m not surprised that this is his final decision and I know that it was seriously considered being that he consulted multiple doctors who all felt this was the best thing to do, but it doesn’t take away my concerns. Any medical procedure comes with risks and I hate risks.

In the meantime, we have to get the procedure completed by the end of the year since our insurance is switching over to Anthem Blue Cross HMO. I realize I went against the grain in choosing an HMO, but we felt the decision was easy because the doctors we wanted were all covered by this plan and if he were ever hospitalized for psychiatric care, he will be sent to the best hospital in our area. In addition, we were very nervous about the unexpected fees that we may incur. I don’t think we could afford to cover 10% of major surgery and with my son’s kidneys, we need to be prepared that this may be in our future someday.

After all that is said and done, I’m happy to have finally made the decision with our health care plan and I’m excited to meet our new doctors. I don’t want to get my expectations up, but as for right now, I have a good feeling about it.


Thursday, November 24, 2011

Family, Feast and Fun!

Today was a great day with family and a delicious Thanksgiving feast. Both my husband and I woke up in a great mood, there was a feeling of optimism and appreciation for all we have to be thankful for. It’s been about 5 years of really tough stuff and this year we felt like we could sit at the table feeling at peace.

After a fun day of spending time with family we love so much and being spoiled by my awesome mother-in-law who worked in the kitchen the entire day preparing an incredible feast, I’m now off to do something ridiculus, I’m going into Target at midnight to do some black friday shopping. Go ahead, make all the jokes you want, yes I am one of the wild ones. But I do have my limits, no standing in line outside the building, so I’ll be following the crowd in to pick up their leftover scraps. Hopefully I can save our family a few bucks. If not, I’ll be back in bed and sleeping in, there will be no early rising tomorrow.

Happy Thanksgiving Everyone!


Tuesday, November 22, 2011

Thankful for the Small Moments

With Thanksgiving break in full swing, we’re seeing our son struggle with all his free time. The change in structure is difficult for him and he seems to be off lately. Today, I spent my time keeping him from bothering his brothers by redirecting him into projects or activities that he can do by himself. Unfortunately, I had to do this over and over and tonight I feel pretty exhausted. I’m also concerned that he may be falling below his therapeutic range.

But tonight, I want to focus on the positive. It’s the small moments that for most seem pretty ordinary.

It’s the moment I see my son smile.

It’s the time we went on our first night walk, laughing and connecting like never before.

It’s the evening I picked my son up from a birthday party and he asked to stay longer.

It’s the day my son swam across a lake with his brothers, giggling like little boys should.

It’s the day my son decorated our door with welcome home signs for his Dad after a business trip.

It’s the day my son did his homework without going into a rage.

It’s the moment my son tries to help his younger brothers.

It’s the moment when my son agrees to be flexible.

It’s the silly moments where our house fills with laughter over farts and poop jokes.

It’s the moment when we all cuddle on the couch to watch our favorite show.

It’s the moment when my son opens up his heart and shares his life with his “uncool mom”.

It’s the moment when I feel like we’re just an ordinary family, living an extraordinary life.

Tonight I am thankful for all this and more. I’m also thankful for all of you who follow my blog, allowing me to share our journey and support us along the way.

Thank you from the bottom of my heart.


Sunday, November 20, 2011

When Medicine Got it Wrong




Thanks to my new twitter account, I came across Katie Cadigan’s tweet about her documentary When Medicine Got it Wrong. This film is about a group of ordinary parents in 1974 that publicly refused to accept blame for causing their children to have schizophrenia. It was the first of its kind, coming out of an era where mental illness in children wasn’t accepted. This group of parents came together to fight for their children and brought advances in understanding, treatment and brain research.

It’s pretty amazing what a few parents can do. This gives me hope for our future, maybe we too can make a positive change!

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Where to view the documentary:
http://www.der.org/films/when-medicine-got-it-wrong.html

The Official website:
http://www.whenmedicine.org/MedW/Home.html

Thursday, November 17, 2011

Peer Perspective

Yesterday we had our parent teacher conferences. I was very pleased to see that my son is performing well academically and that his teacher continues to support us and make modifications when necessary. One of the modifications she made at the meeting was to allow my son to slip quietly into the library to get a head start on his homework 15 minutes before class ends each day. We’ve found that my son is much more willing to do his homework when in school, but once at home he gets overwhelmed with the amount of work and starts to stress out, which as you can imagine, shuts down all productivity. So we agreed that giving him a head start at school will help him not feel so overwhelmed and give him a sense of accomplishment before the stress sets in.

The highlight of the meeting came when the teacher shared that earlier in the week she had a conference with another student who sits at my son’s table. During the meeting the girl showed her parents her desk. As they were checking it out, her Mom asked who she sat next to in class. The teacher overheard the student say, “I sit next to (my son’s name) and he doesn’t say mean things like last year, he is really nice now.”

It was awesome to hear a peer perspective of how far my son has come. Things are not perfect by any means, but the change is monumental!


Monday, November 14, 2011

Stanford University Mood Disorder Videos

Stanford University has recently added videos to their website for each speaker presentation for the 7th Annual Mood Disorders Education Day that took place earlier this summer. Click on the link below and you’ll see the first video of Terence Ketter, MD with the welcome and intro. Below this is a list (example below) with a link to “watch video” for each individual presentation. For those with children, you may be interested in the Child and Adolescent Mood Disorders Update by Manpreet Singh, MD. This is definitely worth your time!

Link to all the videos:

Here’s a list of the videos offered:

Welcome and Introduction to the Stanford Mood Disorders Center
and the National Network of Depression Center

Terence Ketter, MD
Director, Professor of Psychiatry and Behavioral Sciences,
Chief of the Bipolar Disorders Clinic


Stress and Depression
Alan F. Shatzberg, MD
Professor of Psychiatry and Behavioral Sciences,
Director of the Stanford Mood Disorders Center


Neuromodulation Treatments for Mood Disorders Update
H. Brent Solvason, MD
Assistant Professor of Psychiatry and Behavioral Sciences

Child and Adolescent Mood Disorders Update
Manpreet Singh, MD
Assistant Professor of Psychiatry and Behavioral Sciences, 
Co-director of the Pediatric Mood Disorders Clinic

Sleep and Mood Disorders
Allison Harvey, PhD
Professor of Clinical Psychology, University of California, Berkeley

Perspectives from the National Alliance on Mental Illness (NAMI)
Robert Villanueva, NAMI

Perspectives from the Depression and Bipolar Support Alliance (DBSA)
Katherine Lere, DBSA

Nature vs. Nurture in Mood Disorders
Shefali Srivastava, MD
Clinical Instructor at the Bipolar Disorders Clinic, NIMH Mood Disorders Fellow


In case you missed it, here’s a link to my post reviewing all the info I gathered after attending this event and participating in the Q&A session with Dr. Singh:

Sunday, November 13, 2011

A Game of Catch

Today my husband played a game of catch with my son. This may seem insignificant to most, but to us, this was a huge step.

There was a time when my husband had to let go of such dreams. All of the typical things a Dad dreams of doing with his son were not possible because of my son’s moods. He was either too depressed, anxious or agitated, this of course stole any self confidence and made him give up easily when frustrated or refuse to play all together. But this weekend, my husband bought a new football and tried once again to play a game of catch.

I wish you could’ve seen the smile that was on both of their faces, the pride my son had when he caught the ball or even better, when he could throw it past his Dad. What was a game of catch to most, was a dream come true for us.


Thursday, November 10, 2011

Facing the Inevitable Next Step... More Medication

I think most of us would agree that medicating your child is a very scary step. For me, I delayed this step, even though our doctors encouraged it from the beginning, because I was scared of the side effects as well as the judgements of society. Let’s face it, people aren’t very kind to mothers who medicate their children. More than once, I’ve gotten the hard, judgmental looks from other mothers, I’ve received the nasty emails calling me bad names and have read more than my fair share of criticism online. But I made this step, accepting this ridicule because my son needed it and was begging for help. When everything else failed, we turned to medication.

But what I wasn’t prepared for was the inevitable next step... more medication.

I’m sure some would assume that once you’ve open that door, it would be easy to add more medication when the doctors advised it. But honestly, I think this step was even harder.

You’d think I would’ve been ready for this step since I’ve read enough forums to see that many parents of mood disorder children achieve stability with multiple medications. But it still terrified me, even to this day. I don’t want my child on a grocery list of meds. But I can see how it happens. One medication treats one symptom, another treats another symptom. Then if your child gets a side effects, another medication may be introduced for treating that. The list can go on and on. Also, as another medication is added and you finally reach the utopia of stability, nobody wants to mess with the cocktail of meds, what if the house of cards falls when you remove just one of the medications. The entire treatment process is overwhelming, stressful and pretty much sucks!

About a year ago, my son was going through some very violent rages, psychosis and suicidal thoughts. I remember many followers suggesting that my son needed more medication. One in particular, advised me that his rages didn’t have to be like this and that we could get it under control if we would just add another medication. Being scared of this next step, I didn’t do anything, but endure more rages and let my son suffer. What was my reasoning? I was scared that the side effects would be worse than the symptoms. I was worried that he would end up more sick. As it turned out, I was wrong.

Since that time, we’ve added another medication and for the first time we’ve experienced what true stability is. Things are not perfect, but from where we came, it’s close enough. His symptoms are much better under control. He hasn’t seen any monsters or had suicidal thoughts. His rages are very rare and never as bad as they use to be. For the first time, we’re able to put therapy into practice and as a family, we’re slowly healing from all we’ve been through. Now looking back, I regret not helping him sooner. I regret that I let my fear hold us back.

But you know the ironic thing, adding medication doesn’t get any easier. If our doctor would suggest another medication today, I would research, evaluate the risks verses the benefits and pray. I would still have that nervous feeling in my stomach and take the decision very seriously. However, I’m confident that I would no longer let the judgements of others persuade my decisions, I’ve learned long ago that there are many “haters” that have no idea what your child is going through and are in no position to judge, but will do so anyway. I wish I was prepared for that in the beginning.

This is a long journey and unfortunately there are no right answers, just many paths and in the end, you have to trust your instincts. You know your child best!


* * *

This post will appear as part of the 12th edition of Best of the Best on the S-O-S Research Blog. Check there after the 15th to read more entries by other bloggers who are sharing special moments in raising children with invisible disabilities.

Visit this link after Nov. 15th:
http://sos-research-blog.com/11/s-o-s-best-of-the-best-edition-12-medication-use-with-special-needs-kids/


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A Few More Posts Regarding Our Journey with Medication:

When All Systems Fails:

Medicating My Child:

Lithium at 29 Days:

Tuesday, November 8, 2011

When Church Doesn’t Welcome You

Over the past year I’ve received a handful of emails from parents that have been pushed away from their church. In some cases, it’s due to ignorance. As in the case of the family that was told that their child’s mental illness was a direct result of the parent’s sin. Other times, it’s more subtle, maybe their child is too loud during service and can’t sit still, taking away from the “holy” experience, bringing on hushed criticism or rude looks. Either way, the intolerance is felt and families leave their church when unfortunately, they need it most.

Forgive me for preaching, but isn’t God for the weak and broken hearted? Didn’t Jesus scold the disciples when they tried to keep the children away from Him? The church needs to be a place for those that seek Him, even if that means dealing with a loud, unruly child. I know in my heart that God would want it that way. A relationship with God is not perfect, it isn’t about pressed pants and perfect families. God’s family is messy in everyway and God wants us to run to Him when we are hurting, He wants to carry us when we no longer have the strength to go alone.

It breaks my heart and to be honest, makes me angry to hear of families that need God, that desire to be part of a church family, yet have stopped attending because they’ve been turned away directly or indirectly.

I hope to encourage you that there are churches that are accepting, that have awareness or are willing to learn about our children’s needs. They’re dedicated to supporting our families and want to help us in a spiritual as well as practical way.

After over a year of searching, we’ve been very fortunate to have found such a church. Since then, 3 years later, we’ve been offered sitters, meals, one-on-one support and constant prayers. Just this past summer, our Pastor went on a sabbatical with his family for 3 months. During this time, he was suppose to leave everything behind and focus on his family and God so he could recharged himself. He had intended on leaving all prayers for his congregation with his staff, but later shared that my family kept popping into his mind so he finally decided to “pack us up” and take us on his sabbatical where he prayed for us. Besides these abundant prayers, our church has helped to offer solutions for our kids, especially our oldest son, who has a hard time sitting through the services. They allow him to bring his iPod or small toys when he isn’t in a mood to participate, they provide “family tables” with paper, crayons and snacks to keep the kids occupied and they offer a hug when we show up late, knowing that it must have been a difficult morning. To this day, I still get emails asking if there’s anything else they can do to help our family.

I realize how blessed we are to have found this special church where we can grow with God as a family. If you are part of a church and happen to be peeking in on this post, reach out to your staff to see what can be done to help families like myself that are needing accommodations or reach out to the family that has disappeared when it became too hard to attend service and invite them back.

And for the family that has been hurt by their church after being pushed away, keep searching and don’t give up until you find your new church family. Not all churches are the same, but God remains constant wherever you go. As difficult as it is attending church with my bundle of boys, it’s been a blessing in so many ways and was worth the hard work to find it.

* * *

Can you share any successful accommodations you’ve used with your own place of worship?

Sunday, November 6, 2011

A Special Request

When talking with my middle son about how to help him cope with the stress he sometimes feels from his brother, he suggested doing more family fun nights.

For us, a family fun night may be as simple as playing a board game or watching a special show together, nothing too fancy. But I will admit, at the end of the day when things are rough, it can be hard to pour into my kids with this kind of energy. Playing with my kids is hard work, there’s a lot of referring and negotiating that needs to take place, including the typical “stop touching your brother and watch the movie” moments. Depending on how stable your child is, this may need to wait until things are better, but if things are on the upswing, I think we all can agree this is a good idea.

But what I didn’t realize was the kind of impact it had on the siblings. My middle son explained this when he said, “We need to do more family fun nights because it helps me feel safe while having fun at the same time. If you and Dad are there playing a game with us, I feel like you can protect me and I get to relax and enjoy my family.”

Pretty insightful kid, huh!


Thursday, November 3, 2011

Uh Oh... HMO or PPO?

Ok, I need your feedback. Right now we’re trying to navigate our health insurance for next year. We can choose from an HMO (Anthem Blue Cross) or a PPO (Aetna for basic health and Magellan for mental health). I’ve read a little about the positives and negatives of each, but was wondering what your experience and preference was. Care to share?


Wednesday, November 2, 2011

Prayer is Requested...

Tonight I read the heartbreaking post by my fellow blogger Accidental Expert at Raising Complicated Kids. She’s in desperate need for prayer and is asking for it tonight. Please go to her blog now to read her story and lift a prayer up for her son and her family. We may be divided by distance and online anonymity, but we can come together in the name of God.

A Call To Prayer:
http://accidentalexpert.blogspot.com/2011/11/call-to-prayer.html?showComment=1320295155784#c3472580157514755387


Tuesday, November 1, 2011

Ride Don’t Hide



Have you ever been on a long bike ride? To the point of getting blisters and a good sunburn? Check out this hero, his name is Michael Schratter, a Vancouver school teacher and newspaper columnist who set out on a 40,000 km journey across 30 countries all to raise funds for mental illness!

Along his journey, titled Ride Don’t Hide, he’s sharing stories of mental illness and bringing awareness to the stigma surrounding it. All funds raised will go towards children and youth suffering from mental illness.

In an interview with The Vancouver Sun, Michael, who was diagnosed with hypomania (a mild form of bipolar disorder) shared that there is a stigma around those with mental illness and it was time to bring it out of the shadows.

“Hollywood and the media have painted mental illness in a really scary light, that the mentally ill are dangerous. The only time the mentally ill make the newspaper is when something horrific happens so it’s no wonder that everyday people like myself don’t want to talk about it.” (The Vancouver Sun, September 16, 2011)

Michael’s ride started on August 17th, 2011 and will end on November 12, 2011, just 10 days away! Visit his website today to donate, add to the stories being shared or just to leave a message of support.

It’s exciting to see individuals step up to make a difference in a big way. Way to go Michael!

http://www.ridedonthide.com/


* * *

References:
The Vancouver Sun
BY KIM PEMBERTON
http://www.vancouversun.com/health/Teacher+crazy+dream+gets+boost+with+leadership+award/5412128/story.html

SEPTEMBER 16, 2011
Consulted: Nov. 1, 2011

Monday, October 31, 2011

Boo!

This weekend we went “Booing”! It was a blast! All three of my boys dressed up as dark ninjas as they set out to deliver goodie bags undercover to friends in the neighborhood. Their mission wasn’t complete until they rang the door bell and hid in the nearby bushes to watch the unexpecting homeowner open the door and discover their surprise of candy and small toys. You know, the good stuff like plastic spiders and vampire teeth. As “Mama Bear Ninja”, my role was to hide out in my cool mini van down the street and wait for my 3 giggling boys to return with their mission complete.

There was code names, abandoned missions and serious fun! I can honestly say that I felt my heart beat a little faster with excitement as I watched my 3 boys take cover in the dark.

These are the moments I’ve longed for, it’s pure joy to live it!

Happy Halloween Everyone! Now go make some memories!

Friday, October 28, 2011

On Shaky Ground

As we wait to hear from our pediatric nephrologist, I got some upsetting news. My husband’s company is dropping our HMO. This comes as quite a shock and has left us pretty disappointed. I honestly felt like I could throw up when I heard the news. If you’ve been following my blog for a while, you may recall that we’ve had a tough time finding the best doctors for our son’s case. We’ve gone through numerous therapists and several psychiatrist to find those that have the best experience and skills. It may not be perfect, but I can honestly say that we finally felt comfortable with our team and trusted the care our son was receiving.

Now we have until the end of the year to find a new team within a new HMO. Considering the critical time with our son’s kidney concerns, this couldn’t have happened at a worst time. Fortunately, our pediatric nephrologist feels comfortable referring us to somebody on the outside and feels confident that he can perform the biopsy before the change, if that’s his final decision. As for our mental health team, I’ve got some work to do.

It’s ironic that once you feel that things are finally on solid ground, there’s another crack in the dirt.


Tuesday, October 25, 2011

Kidney Update

This week we met with our son’s psychiatrist and nephrologist to evaluate our son’s kidney damage (caused by a birth defect) and his ability to stay on Lithium and Trileptal. Both doctors feel that it’s imperative that our son maintain mental stability during these crucial years of development. As our psychiatrist said, “It is not just gratifying, but really critical for your son’s emotional and social development that he have some stability.” He then went on to say that he would not watch our son progress into renal failure, instead he will monitor him closely and stop medication if it becomes a serious risk.

The final decision is based on the direction of our pediatric nephrologist who currently is seeking multiple opinions on whether or not to do a biopsy. As he told me yesterday, he feels the risk to his kidneys is very low and his vote is to keep our son on medication. In the meantime, they will increase his Lithium blood draws to every 6 weeks to keep a close eye on his levels and will continue to do regular urine tests to monitor the health of his kidneys.

These decisions are not being made lightly, they carry significant weight and I’m pleased to see our kidney specialist, who happens to be the Subchief of his Department, seeking many opinions with other doctors regarding my son’s case.

As wonderful as it is to see my son thriving right now, the seriousness of my son’s health is taking it’s toll on me. As his mom, I desperately want him to be well and have a lifetime of stability. I can’t help but feel discouraged because not only does he have a mental illness, but he also has kidney problems that may get worse because of the treatment he needs. It feels like a double edge sword. With medication, his kidneys could get worse, without medication his mental illness will get worse. No matter what decision we make, our son’s life is on the line.

Sunday, October 23, 2011

Benefits of Lithium

With all the talk of Lithium and the negative side effects, I thought I would highlight some of the positive effects of taking Lithium for mood disorders.

Research has shown that Lithium may actually repair some of the damage that bipolar disorder causes in the brain. It’s been shown that those with bipolar disorder who take Lithium have an increase in brain volume. This is the opposite effect for those without Lithium who over time show a decrease in brain volume in the hippocampus that directly affects moods and emotions and the amygdale that affects anxiety and mood reactions.
You can read more about it here:
http://blogs.psychcentral.com/bipolar/2011/02/lithium-increased-brain-volume-bipolar-disorder/

In another study from the British Journal of Psychiatry in May 2011, they found that Lithium may protect the brain from dementia by reducing progression of minimal cognitive impairment. Some researchers are even looking into it for the treatment of Alzheimer’s.
You can read more about it here:
http://blogs.psychcentral.com/bipolar/2011/10/bipolar-disorder-dementia/
http://www.telegraph.co.uk/health/healthnews/8476615/Lithium-slows-development-of-Alzheimers.html

Another important find is that Lithium has proven to significantly reduce the risk of suicide, averaging a 7-fold reduction. This has not been proven with any other mood stabilizer but Lithium.
You can read more about it here:
http://www.webmd.com/bipolar-disorder/bipolar-disorder-lithium
http://www.mental-health-today.com/bp/mcl2.htm
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC305265/
Dr. Singh mentioned this research:


* * *

References:
Bipolar Beat
Lithium Increased Brain Volumn in Patients with Bipolar Disorder
By Candida Fink, MD
http://blogs.psychcentral.com/bipolar/2011/02/lithium-increased-brain-volume-bipolar-disorder/
Referenced: 10.21.11

Bipolar Beat
Bipolar Disorder and Aging
By Candida Fink, MD
http://blogs.psychcentral.com/bipolar/2011/10/bipolar-disorder-dementia/
Referenced: 10.21.11

The Telegraph
Lithium slows development of Alzheimer’s
By Stephen Adams
http://www.telegraph.co.uk/health/healthnews/8476615/Lithium-slows-development-of-Alzheimers.html
Referenced: 10.21.11


Bipolar Disorder Today
http://www.mental-health-today.com/bp/mcl2.htm
Referenced: 10.21.11







Thursday, October 20, 2011

113 Days

I’m thrilled to report that our son has been on Lithium for 113 days and is still doing fantastic. We haven’t had a second rage after the original that occurred the first week of school back in September. So that’s 113 days with only 1 rage, I never imagined this was possible. Though there’s been a few breakthrough symptoms of sadness, it’s been minimal and easy to manage.

As for side effects, he continues to be doing great. Every once in a while he may feel a little off, but he immediately drinks water and it seems to make him feel better. So now both us and his teacher remind him to drink water throughout the day so that his Lithium blood levels stay consistent.

So what are we seeing?

A normal happy boy. He’s engaged, having fun with friends and exploring his creativity. This week he built a water station in his room. It’s a multi-level system that filters chilled drinking water and a hand washing station. Along with his work, he’s inventing new card games and sketching engineer type drawings of future builds. In addition, he’s loving his after school activity where he’s using his computer skills in a new exciting way and performing well in class.

Just yesterday, I reminded him of our upcoming doctor appointments where we continue to evaluate our son’s kidney condition (birth defect) and his ability to remain on Lithium. He looked at me in a very serious tone and said, “There’s NO way I’m stopping my Lithium, EVER! You’re going to have to fight me to make me stop!”

As you can tell from my son’s statement, he too is well aware of the impact Lithium is having on his life.