Friday, September 30, 2011

Kay Redfield Jamison in BP Magazine

Above: Kay Redfield Jamison responds to the question: 
What would you like to say to those suffering from mental illness?

If you haven’t seen the written interview with Dr. Kay Redfield Jamison in BP Magazine blog, you’ll have to check out the link below (this is different than the video above). If you’ve never heard of Dr. Jamison, let me fill you in. She’s an incredible woman fighting for those with bipolar disorder through her impressive work in bipolar research, her instruction in the Department of Psychiatry and Behavioral Sciences at Johns Hopkins University School of Medicine and through her profound books such as An Unquiet Mind, all while having bipolar disorder herself. According to the interview, her honors include being named one of the Best Doctors in the United States and being chosen by Time magazine as a “Hero of Medicine.” To me, she’s superwoman.

What I found encouraging in her article was that she’s been able to manage her illness with Lithium for more than 30 years now. Though she’s the first to tell you that this is not an easy thing to do, being that she made the mistake of stopping her Lithium at one point, she encourages sufferers to stay on their medication. As she points out:
“There is a huge relationship between suicide and being under the age of 30, but that’s exactly the age group that is least likely to be compliant in taking medication,” Jamison points out.
I feel a calling in Jamison’s words. As a mom, I feel that one of my greatest responsibilities is to teach my son to stay on his medication. It’s become a consistent message in our home. We’re lucky that at the age of 10 he desires to take it and believes that it’s essential to his life, but I know those teen years are approaching and if there’s one thing that goes hand-in-hand with puberty, it’s rebellion. So ironically, while many parents are teaching their kids to avoid drugs, we’re teaching our son to avoid drugs, but don’t stop taking the ones you’re on now. Will this be a confusing message in the years to come or will this be a gateway to trying illegal drugs as some suggest? In my gut, I don’t think so. I really believe that our son understands the value of his meds, but regardless, we’ll remain watchful in the years ahead. I figure that if even Dr. Jamison was able to convince herself that she didn’t need her medication, I know that my son too may think the same someday.

* * *

Read the interview here:
Kay Redfield Jamison: A Profile in Courage

My Book review of An Unquiet Mind:

Tuesday, September 27, 2011

Ah-ha Moments

Most of my son’s symptoms didn’t become apparent until after he was 7 years old, before that he was an easy going baby and a strong-willed toddler. But every once in a while, I recall a situation that now makes perfect sense. Just yesterday I had one of those memories, it was before he was in preschool, maybe he was 4 years old, but I remember taking him to the book store for storybook time. All the other kids were focused in on the story, anticipating the next page and the cookie reward afterwards, but my little boy was miserable. He couldn’t stand sitting with the group of kids, I spent most of the time chasing him down the book aisles and corralling him back to his spot in the group. It took many trips before I finally realized that neither of us was enjoying this experience.

But today, I can look back on this memory and it all makes perfect sense. Most likely my son hated being in the crowd of kids and was experiencing some sensory overload. It seems so obvious now, but back then I didn’t have a clue.

What about you, do you recall any ah-ha moments when looking back?

Sunday, September 25, 2011

Bring on the Compliments!

Yesterday at church, one of my son’s bible study teachers came up to us after class to compliment our son’s good behavior and made the comment that, “he’s completely different”, then asked, “Is it like getting your old son back?”

What I found interesting about this conversation was that it was coming from someone who only sees our son maybe once a month for 30 minutes due to her rotating schedule. I was surprised to see that she could see the difference in our son after so little exposure. I found it pretty cool to be honest!

Our son continues to thrive on Lithium in many ways. He participated in an extracurricular activity for the first time last week, earning praise from his former school teacher. He brought a new friend home for a playdate and even attended a birthday party where for the first time, he really enjoyed himself and even asked if he could stay longer. We can definitely see his social world expanding!

Moments like these give me hope for his future, but more importantly they give me so much joy today!

Friday, September 23, 2011

The Good, the Bad and the Ugly

Today we met with our son’s nephrologist (kidney doctor) and we received some good news and some bad news. The good news is that the doctor doesn’t believe the Lithium is causing my son any harm and he’s encouraging us to keep him on it. The bad news is that he believes that both of my son’s kidneys are damaged and as a result, are operating at only 75% of what they should be.

Based on the info he has now, he believes this is possibly a very rare allergic reaction to Trileptal, his other mood stabilizer, or more than likely, he believes it has nothing to do with his medication and instead, his body is showing the long term effect of his kidney reflux that began when he was 6 months old. Initially, we believed that only one of his kidneys were scarred and growing undersized due to his reflux, but after seeing the results today, the doctor confirmed that both kidneys are scared and undersized.

So now we’re waiting on the results of some more tests and based on what the doctor sees, he will determine if we need to get a kidney biopsy. This biopsy will allow him to examine the microscopic filters of his kidneys to determine if his condition is caused by an allergic reaction to Trileptal or his kidney reflux.

So what happens next?

Well if it’s the medication, we can do something about it. But if it’s what he believes it to be, kidney damage from reflux, there’s nothing we can do but watch to see what happens as he grows over the next 5–6 years. The biggest concern is the approaching puberty years. As his body grows, will his kidneys keep up with the growth? If they don’t, his kidney function will continue to drop and then he’s looking at dialyses or a kidney transplant in the future.

So there you have it, the good, the bad and the ugly.

Just another day in my son’s life.

So how’s my son taking all of this? Well he wanted to know if something happened to him when he was a baby to cause all of his problems, he asked, “Did someone drop me or something?” I giggled and said, “no, it’s just how your body was formed in my womb.”

From there he was actually excited to get his blood work done because that meant he could miss out on a little more school. Thankfully, it doesn’t take much to make my little guy happy these days.

* * *

If you can tell from my photo choice above, I’m trying to focus on the positive!

Tuesday, September 20, 2011

Watching His Kidneys

We got our son’s blood work back recently and found that the Creatinine test had increased slightly to outside the normal range. According to our lab, creatinine and creatinine clearance tests measure the level of the waste product creatinine in your blood and urine. These tests tell how well your kidneys are working.

Of course I contacted our psychiatrist right away and he reassured me that it wasn’t something to be concerned about since it wasn’t “clinically significant” and that we would run more tests in a few months.

But being the Mama Bear I am, I followed up with our kidney specialist because when my son was a baby he had kidney reflux and as a result, one of his kidneys suffered some scaring and grew slightly smaller than it should have. As a result, his kidneys need careful monitoring to make sure he doesn’t suffer further damage or damage to his body because they aren’t functioning well. 

So as a follow up, I contacted his kidney specialist who responded with:

“These tests are minimally concerning but their trend may indicate some future concerns. I think we need to talk.”

On one hand, it’s good news that his current results are not a significant concern, which was really no surprise to me, but on the other hand, there’s this nagging question about future concerns. He’s so young in his treatment and we have so many years, maybe decades ahead where he needs these medications, I’m dreading the thought of facing kidney problems so soon.

I can’t imagine my son having to stop Lithium. The thought of it makes my stomach sick. It would be like taking away the restored vision of a person who was once blind. Now that my son can finally see the world as it really is, how can he go back to where he was before?

I don’t mean to sound so dramatic, but this is the concern I have in my head and in my heart. Until I know different, I will be praying for my boy.

Sunday, September 18, 2011

Bipolar Disorder and Love

I read an article recently and wanted to share it with you, I found it to be encouraging and sad at the same time. It’s an interview with Elizabeth Clayton who’s a professor at Mississippi College in Clinton that chose to expose her bipolar disorder illness. The article shares many deep perspectives from Professor Clayton, as well as those who work closely with her. When reading it, it’s easy to admire her courage in going public and her determination to fight this life long illness. You’ll also notice that she’s a very intelligent, creative and success individual, but what made my stomach turn was her honest reply when asked about her one regret in life:

“That I have never been able to find a companion who would accept me as I am,” she says. “And I had so much to give. So much.”

I seriously wanted to give her a hug, not because I pity her, but because my heart aches for those that suffer with mental illness. I know just like Professor Clayton, my son too wants to love others and be loved. As his mom, I want him to have this and more. I admit it’s not an easy relationship to be in, but it’s still worth it. Loving someone with a mental illness brings pain, but the joys are that much richer. A hug is more warm and a smile is more radiant. This relationship comes with a gift of perspective that you carry throughout your whole life. You learn to cherish what most take for granted and celebrate life’s small moments. Do I wish that my son didn’t have a mental illness, absolutely! Do I regret that he’s my son, absolutely not! I hope the Professor along with my son can find a true love that will love them as they are and in the end, find unexpected blessings along the way.

* * *

Educator shares pain, passion of bipolar disorder:

By Billy Watkins
September 10, 2011
Consulted: September 16, 2011

Thursday, September 15, 2011

Asking for Help

Tonight the boys were outside playing when we told them it was time to head inside for bed. My son became upset, he had plans of wanting to fly a kite instead, so he abruptly took off on his bike. Thankfully, my husband was able to track him down with the car, but once he was back at home, we could tell he wasn’t himself. He seemed to have a little bit of negative energy, even trying to hide in his brothers’ room after they were tucked into bed. During this time, my husband did a great job trying to guide him, offering suggestions on how to get through the moment, while trying to get him to take his evening medicine. It was apparent that we needed to wait until he was ready.

About 30 minutes later he came to me saying, “Mom, I need some help.”

When I asked what was wrong and if he could describe what he was feeling, he explained that he didn’t feel right and couldn’t figure out what was wrong. When I asked if he was still upset about the kite, he said, not at all, he didn’t care about the kite anymore. From there I was able to convince him to take his medication and he used his headphones to distract his brain while he waited for the melatonin to take affect.

I was so relieved to see that sleep finally took over and he could leave this spell of yuck and I was even more proud to see him asking for help when he needed it.

Tuesday, September 13, 2011

Fighting the Worry Monster

Recently we brought our youngest to the therapist because we’ve been concerned about his behavior. It’s been a long list of stuff for a while, but we’ve been busy battling bigger issues with our oldest. After our appointment, our therapist concluded that our little one, who is 6 years old, has some anxiety issues. He believes that it’s probably inherited and then agitated by his brother’s disorder. Here’s an example of what we’ve seen:

  • he’s had night terrors
  • he tells us that he’s scared a lot
  • last year he went through a period of regression in areas that were previously mastered
  • he’s overly sensitive to others and tends to overreact to other kids at school, expecting the worst
  • he has a lot of stress over change and acts out with anger
  • he appears on edge a lot
  • he has nervous habits such as chewing fingernails down to the end
  • when he was a little younger, he only drew people with scowling faces
  • recently he went through a phase where he would repeat all of his sentences in a whisper right after he spoke
  • he has a strong need for order and becomes very upset when things aren’t “just right”
  • he has extreme anxiety over teeth falling out, shots and getting haircuts 
  • he has meltdowns over things like his shoes getting wet and batteries dying, worries excessively
  • his anxiety leads to melt downs, defiance or aggressive behavior, usually mimicking his older brother’s behavior (though it’s not a rage—it’s like he’s imitating what he’s seen)

I know that a lot of kids may have similar issues, but it’s the total list and the negative impact it’s having at school and at home that’s made us concerned.

So what’s the therapist’s solution?

“Fighting the worry monster!”

Now if you’re like me, you might be thinking... why would you introduce a monster to a child that’s scared all the time? Well according to our therapist, we need to help our little one externalize his anxieties so he can acquire skills to fight it. He can’t fight it if he thinks it’s a part of him.

So here’s how it works (I know you’re dying to know):

My son tells us he’s scared to go to sleep. We’re suppose to remind him that he’s listening to the worry monster and he needs to fight it to make it go away. We then have him draw a picture of the “worry monster” then once done, he’s suppose to tear it up, stomp on it, completely destroy it and put into the trash. After that, we give him a ton of praise for fighting the “worry monster” and give him a certificate of bravery or words of praise.

So that’s what we’ve been working on. So far our son seems to participate and it seems to help him forget whatever anxiety he had at the moment. Othertimes, he just yells at me, “stop talking about the worry monster!” I think only time will tell if this is going to work.

So, how have you handled your child’s anxiety?

Sunday, September 11, 2011

Spontaneous Hugs

Spontaneous hugs. 

They’re rarely seen and disappear as fast as they arrive. 

They steal my breath every time.

They remain speechless and travel with a grin,

speaking volumes of the love within.

They push away the past and bring hope for the future,  

making me patient for the anticipated cure. 

I never expect them, 

surprised that they’re from him,

and find myself blessed 

with his spontaneous hugs.

– Mama Bear

* * *

I always know when my son is feeling good, 
he gives me spontaneous hugs!

Thursday, September 8, 2011

Taking Big Steps

After 2 weeks of school, things are looking pretty good. My son is now doing homework without a fuss (crossing fingers that it continues) and he seems to be enjoying himself at school. What’s even more exciting is that he’s taken some big steps lately.

The first big step involved his blood work. After years of fighting to get blood drawn, we found success with a multi-step ritual that involved EMLA cream to numb his skin, headphones with relaxing music and hand massage to distract him during the actual blood draw and finally Ativan to help relax his mind and anxiety, so we could safely get him to the hospital. I know it sounds like a lot, but it’s taken all of this to make blood work even possible. The unfortunate part of this ritual was the Ativan, because as it wore off, it brought major mood swings that pretty much ruined the rest of our day.

So after our last successful blood draw, my son said he was willing to try his next test without the Ativan. To encourage this next step we threw in a bonus of five bucks for every test completed. I honestly wasn’t nervous, we’ve seen major changes with the Lithium, so I was excited to take this next step.

When the big day came, my son happily skipped the Ativan and walked into the lab with a smile on his face, even joked with me while the needle was in his arm. This may seem trivial to some, but to us, this was a major improvement. In the past, our son left my husband bruised and bleeding after trying to get him to the hospital, even attacking his Dad while driving in the car. So to have our son walk into the hospital on his own and complete the blood test calmly was a miraculous event and so worth the five bucks!

Then yesterday, our son came home with an application for an extracurricular activity in the technology field at school. This was such a big step for him. Over the years, his struggles with social anxiety left him uncomfortable in any group setting. Unfortunately, this has made him avoid any kind of activity in or outside the school. So you can imagine how impressed I was when he brought home the application and was excited to apply. I couldn’t help but smile.

* * *

I’m just so grateful for every positive change in my son’s life. I feel blessed to share them with you because you truly know how meaningful this is to us. Thank you for always being there for me during the bad and good times. You’ve been an essential part of his progress, whether it be through your advice, encouragement or support, I know we are better off because of this amazing online community. Thank you from the bottom of my heart!

Tuesday, September 6, 2011

In the News: Puberty is Good Threshold for Bipolar Diagnosis

The above clip is Dr. David Cohen at a press briefing at the annual congress of the European College of Neuropsychopharmacology. During this interview, Dr. Cohen shares his view that puberty is a good threshold for bipolar diagnosis.
“Puberty is a good threshold for talking about bipolar disorder. TDDD is a better diagnosis for pre-pubertal children” because at that stage of life the manic symptoms of bipolar disease, such as irritability, mood change, hyperactivity, and sleep disturbance, can serve as risk markers for the eventual development of bipolar disease, but not at high rates. “Only once a child is at least 11 or 12 years old can you see these symptoms and be confident that it is likely bipolar disease of adolescence or beyond.” Adolescence is when the diagnosis of bipolar disease can truly start. A reliable diagnosis of bipolar disorder in a younger child is really exceptional.” (Zoler, Family Practice News, 9/4/11)

It is interesting to read about the views of the psychiatric field with regards to bipolar disorder. It was only in 1957 when bipolar disorder was officially classified as a diagnosis for adults. Is there any wonder that 54 years later we’re still trying to figure this out? Early onset bipolar disorder has only been acknowledged by some of the psychiatric community for only a handful of years and to this day, remains a divisive topic among psychiatrists. Some doctors think that it doesn’t exist at all in children, Dr. Cohen is an example of one who believes it exists after a certain age, where Dr. Demitri Papolos and Janice Papolos wrote the “The Bipolar Child”, the bible of early onset bipolar disorder.

So what are we suppose to think of all this? Well at times I find it very frustrating, other times I shrug my shoulders and think... call it what you want, my child has a mental illness and he needs treatment. Other times, I have to remind myself that we have to be patient. Just because the psychiatric field doesn’t know how to diagnosis it in children, doesn’t mean that it doesn’t exist in childhood. I’m sure that diabetes existed long before they knew what it was and all the forms it presented itself in. The way I see it, they still have to understand this illness in its early form. It’s like an easter egg hunt, I know the egg is there and all these doctors are searching for it, someday they’ll figure it out and realize that the answer was right in front of them. Hopefully this will happen during our lifetime.

* * *

Read more about this with additional info at:
New DSM-5 Category May Curb Youth Bipolar Overdiagnosis

References:Family Practice News, 
Mitchel L. Zoler
Published: 9/4/11
Consulted: 9/6/11

Video Clip Provided by:
Uploaded by  on Sep 4, 2011

Sunday, September 4, 2011

Suicide Prevention Week

This week is National Suicide Prevention Week. I just wanted to take a moment to bring awareness by sharing some links from the website. If you yourself are considering suicide, please call 911 (US only) or the 24 hour suicide hotline 1-800-SUICIDE. If you just need somebody to talk to, call 1-800-SUICIDE or 1-800-273-TALK. Suicide is preventable and if you’re feeling suicidal, you must get help immediately!

For more awareness, check out these links:

Suicide Warning Signs

Suicide Causes

Bipolar Disorder and Suicide

Suicide Myths

What To Do If Someone Tells You They Are Suicidal

There are many more links that you can find at this website. Check it out and spread the word. In the US, 1 person every 15 minutes dies from suicide. I can share from my own experience that even children can have suicidal thoughts before they know what suicide is. My son has expressed wanting to die since he was 7 years old. This was caused by a chemical imbalance in his brain making him feel depressed and “worthless”. Feeling suicidal is not a weakness that you should hide from others, instead it’s usually a symptom caused by an illness, like depression, that can be treated. Experts believe that most suicidal individuals don’t want to die, they just want to end the pain they’re experiencing. With the right treatment, life will look completely different and the pain can end in a different way. You are loved and you are worth it.

* * *

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

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

* * *

In case you’re wondering why I chose the stock image above, it’s because the rainbow reminded me of God’s promises.

For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future. —Jeremiah 29:11

Thursday, September 1, 2011

It’s Been One of Those Days...

I’m light on words tonight because I’m completely exhausted. After a day that included blood work for my oldest, therapy for my youngest, an ortho appointment, a broken dishwasher, computer problems, childcare for a friend, fitness class instruction with a fake smile and back-to-school night, I have these lovely moments to reflect on (sarcastic tone).

* * *

Laughing was all I could do as I watched my youngest run from the therapist’s office and out into the parking lot (twice) while screaming because he wanted to go back to school. Yes, I had a curious audience watching as the drama took place. If I didn’t laugh I would’ve cried. All I could think of was... really, we’re going to have this much fun together for the next 18 years? I finally had to resort to holding him kicking and screaming while we waited to be called into the therapist’s office only to find out that he doesn’t have OCD, but anxiety issues.

Follow that with an afternoon of my oldest going into a rage after a week of back-to-school stress that included me holding him for 50 minutes while he hit, bit, scratched and kicked me. Thanks to advil and a sense of humor, I’m trying hard to stay positive while convincing myself that someday... this will be really funny.

It’s been one of those days...