Sunday, February 23, 2014

He’s Now Anemic

We saw my son’s psychiatrist last week and after looking at his blood results, he’s determined that my oldest son is anemic. After sharing my concerns of him barely eating at dinner every night, the doctor weighed him and confirm that he isn’t gaining the weight that he’s suppose to for his growth in height. So now the question remains, is he anemic because he refuses to eat, or is his appetite decreased because he’s anemic? Our psychiatrist isn’t sure.

I did ask about his medications, but most of them list weight gain as a side effect. Being a naturally skinny kid, he’s never experienced that. At this time the doctor doesn’t think this is related to the medications, especially because he’s been on them for a long time and the decreased appetite seems to be more recent.

So now we’re being referred to his primary care where we’ll begin further testing and see if we can figure out what’s going on. In the meantime, my son complains that it’s hard for him to eat most meals because he doesn’t feel hungry, but he does acknowledge that he feels tired and weak most of the time.

Sunday, February 16, 2014

Genesight Testing for Medication Guidance

Recently I attended a support group where I learned about Genesight testing from Assurex Health. This testing uses pharmacogenomic technology to look at your genetic makeup and determine which medications may be the best based on your DNA. It’s easy to administer, just a cheek swab and a few weeks waiting while it’s sent to the lab. The testing specifically looks at medications used to treat behavior health conditions such as depression, anxiety, schizophrenia and bipolar disorder. I also know of a local doctor that’s testing his autistic patients. Basically the test helps determine what meds to try and what meds to avoid. This sparked my curiosity to say the least.

My friend had her son tested and shared the results with our group. It outlined 3 categories of medications: “green” (use as directed), “yellow” (use with caution) or “red” (use with increased caution). It also was able to determine if folic acid was being metabolized properly. According to my friend’s doctor, folic acid is important for the brain when it comes to utilizing the medications given to the brain. In my friend’s case, they determined that his body wasn’t metabolizing the folic acid effectively, thus explaining why for years the meds weren’t as affective as they should’ve been. The doctor is now able to address the folic acid deficiency with a form of supplemental folic acid that’s already broken down so it can easily be absorbed.

The idea behind this testing is that doctors can receive individual insight into each patient and make better medication decisions, thus minimizing the trial and error method. Wouldn’t that be a blessing! To think we could’ve avoided some of the bad interactions we experienced over the years. This is definitely worth looking into. At this point, I’m not advocating this test, but just wanted to share with you what I found. I’ve requested this testing for both of my boys and look forward to discussing it further with our psychiatrist later this week. I’ll let you know if we pursue it and if we do, I’ll share our results.

If you have experience with this test, please share with us below!

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Gene test can help recommend best psychiatric medications for patients

Monday, February 10, 2014

When They Refuse to Eat

Lately I’ve been challenged with trying to get my oldest son to eat dinner. He’s always been pretty picky, but lately, to my surprise, he’s become even more so. I worry because he’s a growing teenager and he’s eating like a bird at dinner, sometimes only eating 1 or 2 bites. I’m not worried about him starving since he eats breakfast and lunch on most days (mainly carbs), but even then it can be like pulling teeth. Why doesn’t he want to eat? Is it his sensory issues with food? Are the meds affecting his appetite?

It seems that the more we encourage him to eat, the more he pulls back and won’t even try. I think it may be about control, food is something he can control. This concerns me because most eating disorders are about control. I definitely want to avoid that!

Parenting books advise to not feed him “go-to” foods that he’ll eat, because if you wait long enough he’ll get hungry and eventually eat with the family. But when we pursue that direction, his moods become unstable as his blood sugar drops. It just isn’t worth it.

So we decided to back off. I’m not going to encourage him to put something on his plate. Or force him to try things. I’m letting him have all the control and hopefully in time, he’ll decide to eat more.

Have any of you faced this, and if so, what worked?

Wednesday, February 5, 2014

Our Great Adventure

It all began one late evening while reading CNET when I came across a news article advertising an upcoming event celebrating the 30th Anniversary of the Macintosh computer. This event was advertised to have 7 of the original 10 Apple employees, over 100 members of the Macintosh team, along with key figures that were part of creating a personal computer that helped change the world. This event was taking place in the original hall where Steve Jobs introduced the Macintosh for the first time. The evening would include 3 separate panels sharing their stories first hand to an audience filled with authentic Apple fans.

I have to admit, my heart started to race. I thought, “This would be incredible for my son!” As I looked over the details I soon discovered that the tickets to this special event were pretty expensive. But my hope wasn’t shattered just yet. As I considered my options, I decided to go for it, even if it meant I had to beg a little.

I quickly wrote an email to the sponsors of the event. I told them about my oldest son and his challenges and how he’s been inspired by Apple and Steve Jobs. I explained how Jobs’ quote is hanging on his wall and how he feels like the “square peg in the round hole,” yet my son is determined to change the world through technology. I then asked if they would consider sponsoring my son’s attendance to this event.

Now I knew this was a long shot, but a part of me had a really good feeling about it. In my heart I knew my son needed to be at this event, I knew that this could be life changing, it would give him hope and a vision for his future. At the end of the day, isn’t that what we all really need.

To my surprise I had a response by the next morning. “Yes!” They would sponsor my son, not only that, but they were happy to give me a ticket as well. But that’s not all, Grandpa wanted to be a sponsor too, so he got us our hotel room and a friend who works for Apple gave my son an official Apple shirt and employee name tag. As giddy as two kids on Christmas morning, we were set for our great adventure to Silicon Valley!

We started our fun with a visit to the Computer History Museum. Oh, if only you could’ve seen my son’s eyes light up when he saw the original Apple 1 computer signed by “Woz” or the original pong video game. We had so much fun exploring this museum. I highly recommend it if you ever visit Mountain View, CA.

Apple 1 computer signed by Steve Wozniak, “Woz”

After that, we went to Google Headquarters and snuck onto their campus and took pictures of us on their Google bikes. Which if you haven’t heard, are these fun bikes painted in google colors. The bikes are laying all around the campus for employees to use to go from one place to another. All they have to do is grab a bike, ride it, and leave it for another employee to use. We were seriously “geeked out” over it.

Google bikes on campus

Google Campus: “Googleplex”

That evening we attended the amazing Mac 30th event, it was so fun to listen to the original engineers share their stories. My son has a true appreciation for history so he “got” the significance of being in this room filled with Apple’s historical figures. We thought it was so cool to see the once 14 year old boy, Chris Espinosa, who was among the first employees of Apple computers when they were still working out of the garage of Steve Jobs’ boyhood home. This once child was now an older gentleman, looking like a “grandpa” to my son’s delight. My son and I talked about how years from now he’ll be able to share with his own kids what he heard from these inventors first hand.

Chris Espinosa takes the stage

The band played a few tunes to start the event

The next day we decided to see historical sights in the area, first stopping by “The Garage” where Jobs and Wozniak started Apple computers. It was funny because we were one of 4 other cars there taking pictures. Even though this is an official historical sight, we tried to keep a respectful distance since Jobs’ step mom still lives there. Next, we stopped by Apple Headquarters, or otherwise known as “The Mothership” as referred to by serious Apple fans. Unfortunately for us, the security was much tighter but we were still allowed to take some fun pictures. Then to top it off we visited the original office of Google as we strolled through Palo Alto.

Original garage and home to Apple Computers

The “Mothership,” Apple Headquarters in Cupertino, CA

Google’s first office

After that we went to the final home of Steve Jobs and walked the neighborhood, knowing that we were walking on the same sidewalk where Jobs walked during many of his meetings. My son shared that, “Steve really enjoyed his walks”. I think my son feels a connection to Jobs. After all my son has been through, I think that my son has found a place where he belongs. Where “geeky” kids can be superstars, where thinking differently is rewarded and where his passion for technology can have purpose. So this walk, wasn’t just an ordinary walk, it was following the footsteps of a man he admired and dreamed to be someday.

Steve Jobs’ neighborhood. The sidewalk in front of his final home.

I wish I could adequately put into words how amazing this trip was for the two of us. Not only were we enjoying our shared passion of technology and Apple, but I had two whole days to pour into my son and to spend one-on-one time together. I have to admit, my kid is pretty darn cool! There were no doctor appointments, no homework, and no timeouts. It was just a mom and her precious son sharing their lives together on a once and a lifetime adventure. This trip was priceless. I wish I could do it all over again.

Sunday, February 2, 2014

Mental Illness on 60 Minutes

Link to Video above:

This is one of the most important stories on mental illness in our youth. Everyone needs to watch this story, it demonstrates the desperate state of our mental health system and the crisis that families are in. Virginia State Senator Creigh Deeds shares his story about how his own son who suffered from bipolar disorder stabbed him repetitively only hours after failing to get the care he needed in the emergency room because the hospital didn’t have a bed available. As he strongly pointed out, “The system failed my son tonight.”

If love alone could fix this problem, Senator Deeds would have his son today. But instead the scars on his face will forever remind us all that love is not enough. 

America needs to change how mental illness is treated. Families can’t wait any longer!

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Click here to go to the main page. From there, watch all three videos: