Thursday, February 25, 2010

In His Own Words

The night before I approached my son’s doctor about trying the recommended medicine, I had a heart-to-heart talk with my son about what he thought about the whole situation and what he wanted to do about it.

In his own words, here is how my 8 year old son responded:

“I’m a tornado, destroying everything and you two (his parents) are two large mountains that I’m trying to break through.”

When I asked him what he wanted to do about it, he said:

“I want the doctor to give me medicine so I don’t do bad things and act out. I want them to make my ‘bad side’ go to sleep so my ‘good side’ wakes up first.”

Prior to this discussion I remember very clearly a moment when my 8 year old son was watching a home video of himself when he was 5 years old. He said that it made him sad to see the old home video since “I was so happy back then”, unlike now.

His little brother’s response to the video was “Ah, that was when my brother use to be nice”.

Wednesday, February 24, 2010

Medicating My Child

No parent wants to medicate their child. I have to say this since I think the media has taken such a negative spin on parents medicating their children. Often I’ve heard that we’re just too lazy to parent. Believe me, when the moment came when the doctor told us that we needed to medicate our son since he has a chemical problem in the brain and no amount of therapy, good parenting or nutrition was going to fix it, I was worried. Then when I read the side affects of the medication and the risks involved, I was terrified. This is my first born, this is a child who I love and adore and to put something in his body that could potentially cause harm was so unsettling. Then I was reminded by the doctor that if my son had a heart problem that required medication, I’d jump on the opportunity to help our son. In fact, our son did have a kidney problem when he was a baby and we gave him medicine everyday for almost 2 years and never did I feel guilty or irresponsible. I felt I was doing a good job, taking care of my son and his medical needs. And the truth is, this is no different. My son has a medical need, and he needs medication to help him.

As a parent, it’s hard to accept that there are no blood tests, MRIs or biopsies that can diagnose my son’s illness. That’s why it’s so hard for people looking in on us to understand that my son is truly ill. Unfortunately our son’s illness is diagnosed by a therapist and psychiatrist analyzing my son’s symptoms and behaviors. Even the doctors are hesitant to be specific on what to call my son’s illness, thus the general diagnosis of “mood disorder”. Our doctor tells us that it doesn’t matter what we call it, as long as we are treating the symptoms. And as our son grows, our doctor takes into consideration that there’s the possibility that his brain will change as it develops and he may not need medication in the future. We’re reminded to handle only one day at a time and to not look into the future, easier said than done.

Another challenge we face in medicating our child is that there’s very little research done on treatment and medication for children. Heck, they didn’t even acknowledge that children could have mood disorders until the 1990s, so we still have a long way to go before we know how to best treat our kids. As for the medication, it too is still so new and most are not even approved by the FDA, since understandably, there aren’t many parents willing to let their kids be put through clinical trails. So the doctors are doing their best to prescribe what they think works, based on what they’ve seen in their own practice. So yes, there’s a lot of trial and error. This is both with the type of medication and the amount. Then you take into account, that all kids are so different, for example, one kid may have a positive response to a medication, while another will become much worse. So it’s easy to see why I felt such fear about going down this path of treatment and why I honesty believe every parent takes this step with great caution and much prayer.

But at the end of the day, as my son continued to get worse, my Dad offered some wise insight. He told me that I’d be irresponsible to NOT give my son medication because without this treatment he’d have no hope of getting better, in fact, without medication we’re taking the risk of him causing serious harm to himself or to one of his own family members. Not to mention, we had the opportunity to turn my son’s life around and give him a chance to experience a joyful life, free from the misery he felt inside.

Monday, February 22, 2010

When All Systems Fail

If you’ve been reading this blog and are unaware of the affects of a mood disorder, you may be thinking that all my son needs is some good old-fashioned discipline. It wouldn’t be the first time I’ve heard this, once in a social setting my son went into a rage and a man announced that all my son needed was a good spanking.

Believe me, we’ve tried a lot of parenting methods. I’d like to think that I’ve become somewhat of an expert. From the strong-willed books (that advocate spanking, which when we tried he would respond with a spit to our face and tell us to do it again-so we no longer spank). Then there’s the raising boys books, the five love languages, the praying parent books, the James Dobson answer books and yes, good old Dr. Phil. Then there were books on setting limits and explosive children. I even contacted one author by phone to seek help but he wanted to charge $300 per hour.

Feeling desperate, I would peek in on the “Supernanny” tv show, though I noticed that my child’s behavior was always more extreme than their kids when my son was in the “Mr. Hyde” state. I then tried the video series 1,2,3 Magic provided by our health care system. This is a great tool we still use today, but if my son was out of control, no timeout was going to work. In fact, a lot of the rages started when I was trying to place him into a timeout. And for the record, I didn’t just read these books, but took notes and even made cheat sheets to keep close by so when my son would become hard to manage I would be able to reference the recommended techniques. In the end, I came across a lot of great resources and most were very effective since my younger two boys responded just as the book said they would.

Then, as we moved along with the 1,2,3 magic timeout techniques, we tried reward systems that were multi-level to bring out the most positive behavior (though a huge pain in the butt to manage). There was ticket systems, sticker charts and marble jars to keep track of good behavior, lots of positive words of affirmation. And when my son was “Dr, Jekyll” our home life was running smooth. But once his trigger switched, it was all meaningless.

Our doctor even had us attend a ADHD class, which was useless since he wasn’t ADHD. But with hope we tried to apply what we’d learned.

Besides parenting techniques, we tried removing food coloring dyes (which is everywhere), reducing sugar and increasing proteins. The doctors performed blood tests to make sure his thyroid was normal and they ruled out the possibility that he may have a tumor on his adrenal gland. We added fish oil supplements to his diet and tried exercising after school to exert energy. We even tried the game of chess in hopes of training his brain how to think ahead. We also were in therapy being given play-by-play direction on how to handle every situation that came up. But none of this worked. So when all systems failed, we turned to medicine for the first time.

When We Began to Worry

After several years of reading multiple strong-willed books, learning tons of parenting techniques, there came a point when I realized that this was more than just a strong-willed child.

At about the age of 7, I started seeing new behaviors that didn’t seem ordinary. My son started attending birthday parties and unlike all the other little boys running around having the time of their life, my son was miserable. He was overwhelmed by all the chaos and had anxiety about playing the party games because “I’m just going to lose the game”. He would stand back from the crowd of kids with a look of pain on his face.

In kindergarten, while children were taking on homework assignments for the first time, my son started showing great resistance and his behavior began to escalate. I was already having talks with the teacher about how to get him to complete the assignments. So the teacher’s solution was to avoid doing homework so that he wouldn’t have a negative view of learning. The behavior stopped until first grade when homework was required. That’s when I began to experience full on rages that would last up to 3 hours. These rages would lead him to tearing up all assignments, knocking over furniture, kicking, biting, spitting and acting like a wild person on top of my counter tops. The more I pushed, the more he pushed back.

I also noticed in kindergarten that my son had a lot of anxiety being in front of others, he would become frozen during school performances, refusing to participate. This anxiety has grown so much that he now refuses to go on any stage with his class. Last year, I worked out a solution with the teacher by giving our son a “back stage” responsibility, this allowed participation without performing in front of a crowd.

Another constant is my son’s life is his sensitivity to foods. He’s very picky to both taste and texture. On the other end of this he’s drawn to sweets. I know most kids are, but it seems much more intense with my son. He’s been caught stealing candy from his brothers numerous times, it’s so bad that we now keep any candy locked in a box. But that hasn’t deterred him, he’s been caught drinking snow cone syrup (which we no longer buy) and at restaurants, I’ve caught him eating sugar packets under the table.

Then his environment became an issue, we couldn’t eat in restaurants that were too loud, especially Chipotle, all that metal inside made for poor acoustics, he’d literally break down in tears because of all the people talking. This also happened with crowds, on several occasions in large crowds, our son started to have meltdowns, yelling to “get me out of here”. Even the buildings in our city’s downtown area give him a “headache”. Then his clothing became an issue, all tags had to be cut off and tighter clothing was hard for him to wear. Today he only wears sweatpants.

In the classroom my son always kept it together, it wasn’t until he was home that he’d explode. This is common behavior for children suffering from mood disorders. In the case of these kids, their peer anxiety would help them “keep it together” at school so their friends wouldn’t see this side of them, but once home, they’re emotionally worn out and had to let it all out. This is how it was for my son, as he said in his own words “I used all my good up at school and I have no more left”. Another reason kids let it out at home instead of the outside world is that they know that no matter what, they’re loved by their family, so it’s a safe place to let all their emotions out.

While keeping all that emotion inside, my son would try to close off his environment in school. He became known as the “hood boy” since he’d wear his sweatshirt hood over his head all day. During circle time, he’d disengage from the class and curl up in a ball with his hood on. He also began complaining of being tired all the time and would often lay his head on his desk.

When shopping, our son would experience great anxiety. The process of choosing something to purchase with his own money would always turn into a long, stressed out, overwhelming experience. Once I had to hold him in a timeout as he went into a rage at the entrance of our Target, right in front of their security camera, which displayed the entire event on their large security tv. Not a fun moment.

On several occasions my son talked about hearing voices, smelling things that weren’t there and even feeling a dog licking his foot, when we don’t have an animal in the house. This really scared him.

Then he started having nightmares, very bad ones. There’s always someone trying to kill him in his dreams, or as he mentioned yesterday, his head being torn off, or animals biting him. Sometimes he would scream out in terror, other times he would sleep walk and even become violent in this state. One time he yelled at me to die as he came at me while sleepwalking.

We’re blessed to have such an articulate son, he’s used this blessing to give us insight as to what he’s experiencing inside. He’d describe his brain turning off on one side and the bad side taking over. He sometimes describes his brain as having two brains, a good side and a bad side. Other times he spoke about him having two bodies or he would say that it wasn’t him that was in the rage, but his “other him”. When our son would go into a rage, we tried giving him outlets to exert his anger, like punching a beanbag, but our son sadly said that I can’t do that since I need to destroy something to feel better inside. Once he mentioned after a rage that he didn’t know why he was like this he “just needed to act crazy and hurt people”. He’s highly aware of the need to explode and once he’d explode, it was like getting our son back. He’d once again become loving, considerate, respectful. It’s like a soda can all shook up inside, once opened it needs to explode to calm back down.

When he became more depressed, he’d only have negative comments to make and his view of the world was so negative. Then he’d have thoughts of killing himself. Once, after a rage, he mentioned wanting to stab himself in the stomach. Then one day, after running out of the house when he was in a rage, I found him sitting in the middle of the street. When I asked what he was doing, my 8 year old son said “I’m waiting for a car to run me over so I can die”. As I brought my son in that day, I held him in my arms as he calmly cried out to me, saying that he didn’t feel right inside and that something was wrong with him and that he needed the doctor to fix him.

In the Beginning

Now that my son is in treatment with meds and therapy, I started to wonder about where it all began. What were the first signs of all this? Could challenges from the past be related to this mood disorder?

Looking back, from the very beginning, my son was a “happy baby”. I know this for sure since I journaled this when he was still a baby. But he was my first baby, so I never thought twice about his separation anxiety. How he would cry until I returned home. There were so many times that I would return home from teaching my 1 hour fitness class and my patient, but worn out husband, would hand my crying son over saying “Here, you feed him, he refuses to take the bottle you pumped for him, he only wants you!” This also happened when I tried the daycare at the fitness club, he would cry the entire hour, once they even brought him to me during the class saying that they couldn’t take the screaming anymore and that I needed to take him, so I had to teach the remaining step class holding my baby in my sweaty arms. It was uncomfortable for me to teach and hold him, but he was in heaven, quickly falling asleep.

As he grew I noticed in play groups he required a lot more supervision. He seemed to push the envelope where the others kids didn’t as much. I remember laughing in my church group that “I had to keep redirecting my son, while the rest of the moms where finishing their tea.”

Then during preschool he started to stutter. As it continued to get worse, we enrolled him into speech therapy. We feel blessed that he was cured of his stutter through this therapy.

Also during this time, he started to have bad night terrors. If you have ever witnessed this as a parent, it is pretty frightening for those awake, but for our son, he never remembered them.

As our son grew and his personality developed I realized that our son was a lot more challenging then the other kids we knew. Over time, it became defined to me as being “strong-willed”. One crystal clear example of this was during potty training. Our son refused to wear his underwear and in protest, he smeared poop all over his entire room, twice. Now this isn’t the exploration of a baby in a crib, this was a 4 year old, with 4 year old poop and enough time during his “nap time” (which he never slept), to smear it over all his toys, his carpet, his bedding and even under the bed. When I asked why he did it, he said he wanted his diaper back. So I gave it back (yes I gave in), then a week later he asked for his underwear and instantly was potty trained without another mishap.

When it came to sleep, our son wanted to do it on his own terms too. He would never nap. I remember once when trying to teach him to go to sleep in his room with the cry-it-out method, he body slammed the baby gate keeping him in is room, knocking the gate clear across the hall, even causing himself harm. But it was worth it to him to break free from required bed time.

I am in no way saying that these behaviors are connected to what is going on with our son today, but since there is so much mystery with mood behaviors and children, I figured I would make note of it in case another mom is looking for information they can relate to. And I also know that there are other parents that have been through so much worse, but this is only the beginning of our story.

Meet Dr. Jekyll and Mr. Hyde

I’ve read in several books for mood disorder children that kids can resemble Dr. Jekyll and Mr. Hyde. This is true for our son. Our boy is truly a sweet, loving, caring child who’s sensitive to other people’s feelings. His smile lights up the room and his passion is contagious, this is Dr. Jekyll.

Then around the age of 7, we started to see our son in such an unfamiliar light. His smile disappeared, his personality twisted into one that was very mean, hurtful, destructive and violent. This was our Mr. Hyde. Mr. Hyde would become enraged with the word “no”, he couldn’t handle any opposition or change of plans. A simple “No you can’t have a granola bar, you just had a snack” has led to violent attacks on me and his brother, to the point where he was choking his own brother. This situation is in no way like the in-fighting between brothers, it was clearly a moment of our son losing all control, becoming like a wild animal and attacking anything close by. During these rages, our son screams out words of hate and tells us that he “wished we were dead” and that “I’m going to kill you”. Even typing these words seems so disturbing, but once you’ve lived it, you quickly realize that it comes with the territory.

Along with the rage, comes the depression. Our son would become upset with everything, nothing made him happy. It’s common during these times to hear things like “this is the worst day ever”, “I have no friends” or “I should just cut my head off”. Following an explosive rage, he’s often filled with regret and remorse, which he took out on himself. I clearly remember a moment after a rage, when he sat calmly, looking out the window and telling me that he wished he was dead and that he was God’s mistake. It was one of those defining moments we had early on, when I knew that something was wrong with my son and that we needed professional help.

Now this type of behavior would come and go, we never knew which boy we would have and how long he would stay, his behavior would cycle without any kind of reason. I remember one day not long ago, my son saved up all his good behavior tickets in school and instead of spending it on himself, he spent the entire amount on his brother, bringing home a toy for him. It was so sweet and kind, but his behavior changed quickly when during homework he became overwhelmed and destroyed the very toy.

Living with Dr. Jekell and Mr. Hyde is so hard. When my son is sweet and kind, you start to think, maybe this phase is over, maybe the meds have completely healed him, then you see the scary side return and feel crushed knowing that your son is truly ill and his life will be filled with ups and downs.

Saturday, February 20, 2010

Meet Mama Bear

When I was pregnant with my first child, about 8 months, I saw two men trying to break into our house as I pulled into my driveway. That’s the moment when I discovered my “Mama Bear instincts”. I climbed out of my car, with my big pregnant belly and approached the men. I scolded them and told them to leave our neighborhood and that I was going to call the police. It wasn’t until later when my neighbor who witnessed the whole thing from her bedroom window mentioned how bold I was for approaching these guys. At the time, I never thought about what they could do to me, I was overcome with a strong feeling to protect my home and to protect my family.

Today these feeling are alive and well, as it is for most moms. I’m Mama Bear to three boys, my youngest is 5 years old, my middle son is 7 years and my oldest is 9 years. I have very protective feelings for all of my boys, but with a mood disorder in the family, this instinct shows up in different ways. I’m passionately searching for a way to protect my oldest who is living with a mood disorder from all the pain he’s living with, yet at the same time, I’m just as passionate about protecting my other sons from their own brother. This is a very strange dynamic to live with. And as you can imagine, my feelings are so scattered, it makes for a very messy mind.

Tonight, I experienced this very challenge. As my moody son went into a rage, I was trying to protect himself from harm when I was hit hard in the face, causing my tongue to bleed. After checking to make sure my teeth weren’t chipped and cleaning the blood from my mouth, I found my middle son locking himself into a bathroom, frightened by his brother’s rage. From there I switched to protecting my younger boys, so I brought them to their room and closed the door so they wouldn’t hear their brother’s screams. I sat with them, giving them hugs and words of comfort to assure them they’re safe and their moody brother couldn’t hurt them. Once they’re calm, I was back to my moody son to help him through his rage, making sure that he didn’t do something to hurt himself, waiting for him to return to his normal senses so that he could feel safe and assured that after all that he’s done, he’s still loved.

Friday, February 19, 2010

Something is Wrong with My Son.

It’s very hard to start a blog when you’re still in the middle of chaos. I’ve read books after people have overcome their life’s challenge, but to write about my challenge when I’m still in the middle of it makes me feel overwhelmed. I honestly got stuck on what to call this blog, how do you give a name to a blog when the doctors don’t want to give a name to your child’s illness?

So I’ve decided to start with my son’s own words. “I have two brains. One side is good and the other side is bad. The bad side takes over and makes me do bad stuff.”

It seems so simple, coming from my then 7 year old son’s mouth, but in a nutshell, he’s perfectly described his life experience for the past two years. My son has two brains, one that’s loving, intelligent, creative, silly, disciplined and curious, then the other brain that takes over and becomes irritable, mean, disrespectful, anxious, depressed, and violent.

After two years of doctor visits, therapy, research and prayers, our therapist has finally given us a “label” for our son’s condition. He’s calling it a “mood disorder” with impulsive disorder and explosive disorder. So what’s this all mean? Well I’m trying to figure that out. But what I do know is that my son has a mental illness and that brings me great sadness for our son and my entire family.