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.


Tuesday, October 18, 2011

Risk-Benefit Evaluation

As parents, we’re all facing difficult decisions when it comes to our child’s treatment. I don’t claim that one way is better than another, I can only share what works and doesn’t work for us. If you’re a parent that has found success with nutrition, exercise, vitamins or a number of other treatment options, I think that’s fantastic! I really do. I wish that was the case for our son. For us, we turned to medication when other treatment options didn’t work. As I move forward with medication, I try and keep in mind some advice I got from Dr. Singh from Stanford University:

“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?”

That’s a question only you and your child can answer.


Sunday, October 16, 2011

When Blogging Hurts

I’m not a recruiter for CABF.

I’m not a psychiatrist or therapist.

I’m not an advocate for pharmaceutical companies.

I’m not brainwashed, unevolved or the source of a serious parenting problem.

I am a mom.

I’m a mom who’s fighting for her son’s life.

I’m a mom who doesn’t have all the answers and often feels ill equipped.

I’m a mom who’s disappointed that the research isn’t farther along.

I’m a mom who’s terrified of possible side effects.

I’m a mom who’s questioning everything our doctor suggests.

I’m a mom who’s frustrated by all the controversy.

I’m a mom who’s offended by all the accusations.

I’m a mom who’s making the best decisions based on the direction of our medical team.

I’m a mom who cries because we’re not doing enough.

I’m a mom who worries because we’re doing too much.

I’m a mom who’s experiencing hope thanks to medication.

I’m a mom who realizes that hope doesn’t always stick around.

I’m a mom who’s watched her son lose touch with reality and is terrified of what could happen next.

I’m a mom who’s scared that her son will end up in prison if he doesn’t have treatment.

I’m a mom who’s sickened by thoughts of finding her son hanging in his room because he stopped treatment.

I’m a mom who’s worried that her son will become addicted to drugs and alcohol in an effort to treat his symptoms on his own.

I’m a mom who’s bled from the hands of her own son.

I’m a mom who’s watched her other children tremble in fear while their brother raged.

I’m a mom who’s seen her 7 year old boy cry while frantically hiding sharp objects from his brother who wanted to kill himself.

I’m a mom who’s seen her son desperately begging for help.

I’m a mom who’s witnessed the devastation of real mental illness.

I’m a mom who hurts, as others throw stones at her for the decisions she’s made.

I’m only a mom... speaking my truth.


* * *

Recently I participated in a discussion on another forum and was hit pretty hard by the words of a few.

I think a reader who visited the conversation put it best when she said:

“...it is kind of like a car accident, you drive by and can’t help looking at it. I tried not to go back to that blog but I did, and it was quite awful what they were saying about you.”

I tried to share my story, but I found that there are people that will always assume the worst of me because I medicate my son. I can’t change that. I’m sharing this with you to show you what moms like me are up against.

Here is the conversation (comment section), but remember, I warned you, it ain’t pretty...


Thursday, October 13, 2011

There’s No Conspiracy

Thanks to a reader, a blog was brought to my attention and I wanted to respond to it here. Not because I wanted to single this writer out, but because I know that many others may have the same concerns. It’s a post by a blogger who has taken a hard look at Dr. Joseph Biederman, a world-renowned Harvard child psychiatrist who according to The New York Times help fuel an explosion in the use of powerful antipsychotic medication in children while not reporting all the money he made from drug makers. As this article states:

Dr. Biederman is one of the most influential researchers in child psychiatry and is widely admired for focusing the field’s attention on its most troubled young patients. Although many of his studies are small and often financed by drug makers, his work helped to fuel a controversial 40-fold increase from 1994 to 2003 in the diagnosis of pediatric bipolar disorder, which is characterized by severe mood swings, and a rapid rise in the use of antipsychotic medicines in children. (GARDINER HARRIS and BENEDICT CAREY, June 8, 2008)


This is definitely disturbing and I’m happy to see that there are watch dogs that are calling attention to misconduct in the field of child psychiatry research, but this blogger is also claiming that the name change for the Child & Adolescent Bipolar Foundation (CABF) to The Balanced Mind Foundation is not to better serve the community, but instead to distance themselves from the stigma that Bieberman has brought to them. He states:

“Families did not want a medical sounding name, which they found to be stigmatizing” doesn’t quite capture the truth. For twelve years, they didn’t have trouble with the Child & Adolescent Bipolar Foundation, but now they’re changing their name. The real stigmatizing name that was their problem was Joseph Biederman [AKA God] who remains on their scientific advisory council. (1 Boring Old Man, October 12, 2011)

You can read the full post here:
http://1boringoldman.com/index.php/2011/10/12/whats-in-a-name-that-which-we-call-a-rose/

* * *

Here is my response:

It seems that there’s a lot being assumed regarding the name change by the Child & Adolescent Bipolar Foundation (CABF).

As a parent, I was looking for support years ago, but couldn’t find anything that matched my son’s symptoms. At the time, I saw CABF, but didn’t participate on this forum because my son didn’t have the diagnosis of Bipolar Disorder. As time went on, my son became more ill, wanting to kill himself, seeing monsters and hearing voices along with rapid cycling. It was finally then that I started to seek support on CABF. Today, this website continues to be a very important resource for my family and I regret not visiting there sooner.

Because the field of pediatric mood disorders is still in its infancy stage and children are hard to diagnosis because of their developing brains, it may be years before our children get an “official correct diagnosis” for their mood disorders. Add to that the possibility of a new diagnosis being added to the DSM, and we’re left with a lot of parents looking for help and no place to land.

So as a user of this website, regardless on whether I like or dislike the new name, I think it’s important that CABF bring support to families like mine at any stage of our journey. Most kids will have several labels throughout their care because as the child’s brain grows, new symptoms appear, leading to a more defined diagnosis or a new diagnosis altogether. This was the case with our own son. Also, if doctors begin to avoid the diagnosis of “bipolar disorder”, even in cases where it seems evident (like our previous Psychiatrist has declared), families will be looking for resources and CABF will not be on their radar because of the name “Bipolar”. By changing the name, more families lost in the mess of pediatric labels can find the support they so desperately need and the support CABF can provide.

Also, it’s no surprise to me that after winning $250,000 in the the Pepsi Refresh Contest, that the foundation would invest in reevaluating their mission and revamping their look, this is what organizations do, it’s not a conspiracy.

By the way, in no way has Risperdal ever been pushed on my child through this website. In fact, we’ve never even tried it because we’ve found success with Lithium. Though I will mention that there are plenty of parents that are thankful for it and other antipsychotics. So the question remains, is Biederman’s research false because he didn’t report all of his income, or is it simply in question because of the conflict of interest? Unfortunately only more research will answer these questions.

The field of child psychiatry is not full of greedy, corrupt doctors. Just like any field, there can be a few bad seeds, but that doesn’t mean that the entire field is corrupt. If you toss out Biederman’s work, it doesn’t make my child’s symptoms disappear. It doesn’t take away the fact that my child needs medication. My child needs medication and is better because of it. Also, Bieberman’s wrong doing is unfortunate, but it doesn’t erase all the good that is being done in the field of pediatric research today. I have faith that organizations like CABF, now called The Balanced Mind Foundationare here to serve families like mine and that someday, researchers will have the answers and treatments we are all looking for.


* * *

Resources:
The New York Times
Researchers Fail to Reveal Full Drug Pay
By GARDINER HARRIS and BENEDICT CAREY
http://www.nytimes.com/2008/06/08/us/08conflict.html?pagewanted=all 

Published: June 8, 2008Consulted: October 13, 2011

1 Boring Old Man (name of the actual blog)
http://1boringoldman.com/index.php/2011/10/12/whats-in-a-name-that-which-we-call-a-rose/

Tuesday, October 11, 2011

Perfectly Created

Raising a child with a mood disorder brings many challenges for our entire family. In order to help us cope, we’ve committed to having special alone dates with each of our kids. This time is not only valuable to our 3 boys, but as their parents we’re blessed with the unique opportunity to see our boys in a different light as well as enjoy who they’re becoming without the chaos of the whole family.

Recently I took my 8 year old son out on one of those special dates. As the compliant middle child, he often goes with the flow, like most middle kids, but unfortunately for our son, he has an older brother with a mood disorder and a younger brother with anxiety issues. This leaves him feeling lost, if not trapped inside a lot of abuse, drama and stress. So to help him cope with these challenges, I try to make him feel extra special and give him a safe place to express his feelings.

For our special “Mommy date”, I told my middle son to get dressed up nice because I was taking him out to a fancy restaurant. Unlike my other boys, my middle son has a love for good food and isn’t afraid to try new things. So I took advantage of this opportunity and made a reservation with P.F. Changs. Yes, P.F. Changs is fancy for my family! 

As my middle son came downstairs for our “date”, he looked as handsome as can be, all dressed up with his nice jeans on and his hair combed to the side. He even wore his special cross necklace with his baptism date engraved on it. As he stepped out the door with Mom by his side, Dad grabbed his shoulder and warned him , “Now Son, you’re about to take the most precious thing I have out tonight. You take care of my girl and you treat her right, ok?” My son grinned and promised, “Yes Dad, I will.”

Once at the restaurant, my son thoroughly enjoying himself, especially as he mastered his chop sticks. I think it was the first time he had dinner with cloth napkins and candles on the table, to say he was impressed was an understatement!

During dinner, he explained how relaxing it was to be out of the house away from his brothers. When I acknowledged his feelings, letting him know how sorry I was that he had to deal with so much at such a young age, he responded, “Yeah, it’s pretty hard having two brothers with brain problems, but I know someday it’s gonna help me when I grow up to be a pastor of a church because I’ll know what it feels like to go through hard times.”

Wow! I was impressed and overwhelmed with his words of wisdom. Can you believe he’s only 8 years old? But it didn’t stop there. While waiting for our check, my son watched the chefs prepare food in the kitchen. Then he asked out of curiosity, “Can I be a pastor and a chef when I grow up?” I explained that it would be pretty tough since both were full time jobs. With a small head nod, he let out a big sigh and said, “...bummer, because I wanted to feed the homeless.”

Just when I think that we’ve been through too much or that my children are scarred from all the hardships, I’m reminded in a moment like this that my sons are extraordinary individuals who are perfectly created for the life we’ve been blessed with.

* * *

This post will appear as part of the 11th 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 Saturday, Oct. 15th:
http://sos-research-blog.com/10/s-o-s-best-of-the-best-edition-11-family-life/



Sunday, October 9, 2011

The Balanced Mind Foundation



It’s a sign of the times! Child Adolescent Bipolar Foundation (CABF) has changed their name to The Balanced Mind Foundation. According to this link, this change reflects their own research that children experience a number of “working labels” with co-morbid conditions making the word bipolar limiting. So to better serve the community, the organization is broadening their scope. You can read more about it in the link below. If you haven’t check out this site, it’s a must-do for any parent who’s raising a child with mood issues.

http://www.thebalancedmind.org/connect/forums/general-discussion/big-changes-at-cabf-a-message-from-our-executive-director

* * *

I’m curious, does anyone object to this change? I read on the website that some members were disappointed for losing the “bipolar emphasis”. What do you think?

Thursday, October 6, 2011

Depression—A Way Out Through Charity



Today I have a guest post from HelpForDepression.com, please read their important message and help raise money with a click of your mouse for a worthy organization. Happy Friday everyone!

* * *

Depression is one of the most common mental illnesses in the United States, affecting as many as 1 in 10 adults—that could be 1 out of every ten people you know. Research suggests that depression is caused by chemical or hormonal imbalances in the brain, and that it isn’t just “all in your head,” so to speak.

You might well be surprised by that statistic on the high prevalence of depression, but you may be even more surprised to learn that depression is likely significantly under-diagnosed. Many people live with depression for months or even years without seeking treatment, perhaps due to the stigma attached to mental illnesses in the U.S.

Researchers are also starting to study how depression co-occurs with other illnesses or conditions. Up to 40% of people suffering from Post-Traumatic Stress Disorder, for instance, will suffer from depression by 4 months after their traumatic experience. Depression may also occur before, during, or after other common illnesses, such as diabetes, cancer, and heart disease.

There should be no shame in acknowledging an illness like this and seeking treatment. People’s lives may depend on it! Luckily, there are a host of wonderful organizations out there working hard to erase the stigma attached to depression and other mental health issues, and it’s never been easier to help them succeed.

HelpForDepression.com and To Write Love on Her Arms are dedicated to bringing hope to those suffering from depression. October is Depression Awareness Month, and these organizations are working hard to make sure that the message is out:

“Depression is not a weakness, it’s an illness.” And depression can be treated!

To make the biggest change for the most people, Help for Depression and To Write Love on Her Arms (a non-profit organization providing outreach and awareness services) have launched an ambitious fundraiser. You can give them money at no cost to you (what could be easier?) by “liking” HelpForDepression.com on Facebook.

For each of the first 15,000 people who “like” HelpForDepression.com on Facebook by October 15th, $1 will be donated to help people battle depression and find support and healing.

About 35,000 suicides take place every year in the U.S.—most of which are committed by individuals suffering from depression or other mental illnesses. Even worse, there are 11 suicide attempts per every completed suicide. Depression simply can’t be ignored.

So go ahead—make a difference for the mental health of thousands of people across the country, and get everyone you know on Facebook to “like” HelpForDepression.com with you. It’s a free, feel-good way to draw attention to the issue and to lend a helping hand to someone in need.

Together, we can make a difference for those suffering from depression in our communities. “Like” HelpForDepression.com now, and see the movement grow!



Tuesday, October 4, 2011

Finding His Way

Today my son came home from school in a great mood because he made a new friend. If you remember my last post, my son admitted to having a 504 plan to another girl who also had one. Well today, this same girl was very friendly, following him around and wanting to visit with my son. Then during recess, she shared that she had an autoimmune disease and this was the reason for her 504 plan. From there, the two formed an instant friendship out of having something unique in common.

What was exciting to see was how much my son enjoyed talking with this girl, he said, “Talking with her about our 504 plans was the best part of my day, it made me feel good, like I wasn’t the only one.”

I smiled at his words and told him how proud I was of him to open up with others. I also let him know that people find that “good feeling” in support groups and I explained that if he ever wanted to try one we could look into it, in the meantime, I think it’s so cool that he’s finding his own way.

Monday, October 3, 2011

Navigating Conversations

On Friday, my son shared in an excited tone that one of the girls from his class figured out that he had a 504 plan. When I asked how she knew, he said. “I think she figured it out since we both didn’t have to run in the heat. She told me she had a 504 plan and asked if I had one too.”

“Did you tell her you had one?” I asked.

“I told her I did. Then she asked me why.” he said.

So of course I was curious how he responded, asking him, “What did you tell her?”

He said he told her, “Let’s just say... that I can hurt people.”

Then I asked, “How did she respond to that?”

He smiled and said that she didn’t say anything else.

Hmmm... I think we need to work on what he should tell others. I know that he isn’t comfortable telling people he has a mental illness, but going this direction could backfire on him.

It’s another one of those moments when I wish he could just be honest and people would understand.