Monday, March 29, 2010

Coming Up for Air

Over the past two years of my son’s illness, I’ve had moments of feeling like I was drowning. Thanks to God, my family and friends, I’ve been picked up and encouraged during these times. Now, with the positive changes I’ve seen in my son, I feel like I’m coming up for air.

It’s kind of funny when things start to feel normal again. You look around and see the damage after the storm, then you start to clean it up. That’s where I am today. I’m cleaning up after our storm.

I’m starting to put more focus on my other kids. My husband and I had a laugh when we realized that our youngest son had the most timeouts this week and that our middle son has had to work on his whining. It’s not like we have completely ignored our other kids, it’s just that our attention has been on more challenging behaviors. With our oldest son doing better, we can now put more attention on the smaller issues.

We’re now working with our therapist to help our moody son cope with anxiety and sensory issues. The first challenge is helping him overcome his fear of eating inside a Chipolte restaurant. With the metal interior and open kitchen, the poor acoustics make it an unbearable environment for my son.

I’m also starting to think about our son’s future in a positive light. I know that after all our son has been through, his self esteem has been bruised. I’m hoping that we can help him recognize his successes and see that he’s an amazing boy, even when he makes big mistakes.

I’m also hopeful that we can open up our world by making friends again and having playdates. I would love to see our son be invited to birthday parties again and for other kids to see his sense of humor. Better yet, I look forward to his brothers regaining their trust with our son and to build that brotherly bond.

Now just so you know, I’m being very optimistic. Our son is not healed, we have a lot of work to do in terms of behavioral issues and managing his illness. Even yesterday, he was kicked out of his bible study class for misbehaving. But for the first time in a while, I feel that he’s now teachable.

So now that we’re finding some stability, I’m looking forward to my children enjoying life more, getting along better and living without fear. I’m looking forward to little bit of normalcy, heck, I might even patch the hole in his door. But with all that I desire to “clean up”, I need to take my son’s advice and take it slow, as he said in his own words “Let’s just start with Chipolte.”

Saturday, March 27, 2010

We’re Back on Track!

I’m so happy to report that we’re back on track! Once we lowered his dose of Trileptal, our son has once again found his bliss. He has been kind, loving, helpful and just plain sweet! It just amazes me that such a small amount of medicine can have such a big impact on his brain. I can’t imagine what it must feel like to him after all he has been through.

I guess for the rest of us, the closest thing we can compare it to is when you’re sick with a flu. You recognize that you feel bad, but you never realize just how bad you feel until you are back on your feet, feeling good again. It is then when you think...“Man, was I sick!” I wonder if that is what my son is feeling now, does he feel so incredibly good, compared to his past? That would explain why he is glowing with happiness!

Today was a true test. He asked “me” if we could go to the zoo, knowing full well that it was a weekend, filled with crowds. In the past, he always rejected this idea since his anxiety would overwhelm him. But today there was no sign of anxiety, even though there were many “triggers” that would have sent him over the edge, he passed with flying colors. For example:

When we arrived, the line into the zoo was over 50 people!
Passed! He was patient, even pleasant as we chatted.

Next we faced the unmet expectation of the zoo being sold out of ice cream. (Yeah I know, that’s a crime)
Passed! He was not even upset by this, even offered that we visit the monkeys instead!

Then we had the temptation of all the merchandise. This would normally have been a point of irritability.
Passed! He just accepted the answer “No” then acknowledge that they were probably too expensive.

Then we had the crowds around a popular exhibit. This usually will make him feel sick or panic.
Passed! He offered that we wait a few minutes before approaching, so the crowd could thin out.

As we were leaving I decided to reward the boys for a good day. I allowed the boys to pick a stuffed animal to take home. In the past, purchase decisions take painfully long and usually end with tears and disappointment.
Passed! He quickly thought it out and committed to his choice. It was so worth the five bucks!

Then to top the day off, I forgot where I parked. (Hey, it had been a long day, give a girl a break!)
Passed! Instead of a meltdown, he helped me find the car, even laughed at me along the way.

What can I say, I can’t be happier with where we are today. We’ve experienced some of the worst months of our lives recently and to come out of it with a day like today, brings tears to my eyes, tears of joy!

Friday, March 26, 2010

Too Much of a Good Thing

Well our week of bliss came to an end last night after increasing our son’s dose of Trileptal to the full dose, as directed by his doctor. He was on a 1/2 dose for the first week to slowly give his body a chance to adapt to the medication, and it was on this 1/2 dose that we saw such amazing improvement.

Once we went to the full dose, I started to notice some impulsivity. When I picked him up from school yesterday, it was obvious that things were not right with him. He was overly sensitive and could barely complete his homework through tears of frustration. The days prior, on the lower dose, he was actually having fun doing long division, even claiming to be one of the best in his class at it. Then today, he couldn’t even figure out how to construct a division problem, now claiming that he was the worst in his class.

As evening approached, things continued to escalate at the gym. When I picked the kids up at the gym’s childcare (after being there less than an hour), the childcare workers approached me with a look of exhaustion, explaining that our son had been out of control. He impulsively ran out of the emergency exit, then once brought back, refused to go into a timeout. When I called my son to me, I noticed right away that he was struggling. He had this crazy look in his eye and immediately started talking rudely to the staff and talking back to me with a lot of attitude. After apologizing to the staff, feeling embarrassed and disappointed I headed home.

Just minutes after getting home, he hurt his brother. Then when I was trying to get him into his room for a timeout, he looked right at me, then “Bam!” another head butt to my face. So there, with a fat lip, I struggled to hold him on the ground, as I waited for my husband to come to my rescue.

For both my husband and myself, it was obvious that the higher dose was the source of all this behavior. So we finished the night by lowering his dose back to where we were and prayed that this would bring us back to our week of bliss.

I have to admit, that even when you try to prepare for set backs, they still hit you hard (like a head butt to the face). We felt almost teased by our great week and I know that our son felt the same. Several times in the day, he would yell that his medicine wasn’t working and that we shouldn’t have increased the dose. I agree, my precious son.

So today we start a new day and I still have my dancing shoes sitting out, ready to celebrate another smile and giggle. I am hopeful that the doctor will agree with the lower dose and that my son will find his bliss once again.

As I watched him head off to school today there was a skip in his step and a smile on his face, I am feeling very optimistic!

Thursday, March 25, 2010

Starting Trileptal with a Smile

After experiencing an allergic reaction to Depakote, my son was switched to Trileptal. Like Depakote, this is another anticonvulsant used as a “mood stabilizer”. So far, he has had very little side effects as he adjusts to the medication and I’m happy to say that we have seen a major improvement.

After taking his first dose of Trileptal, my son’s terrifying nightmares have stopped. These nightmares have been part of his life, but once we started Seroquel, they disappeared, only to return the day he was taken off Seroquel. Now just so you understand, these nightmares are not typical, these nightmares involve my son witnessing his own murder, seeing his head being torn off by monsters. Everynight he would wake up with screams and run into our room for protection. So to have these dreams stop, the night he started on Trileptal, was a great relief. Each morning, when my husband and I would wake up and see that our son hadn’t join us in the night, we felt a small victory. After a week of being on the new medication, the nightmares still have not returned.

Our celebration also continues as we have witnessed a total change in our son’s personality. He has become joyful. Everynight at the dinner table, our son has been so talkative, sharing funny stories from his day. He has been laughing, almost giddy, being silly as a 9 year old boy should be. I don’t really know how to describe the change we have seen. But basically, we had a son that was depressed, wanted to kill himself, was angry at everyone, abusive and intolerable. But now he is kind, helping his little brother, offering up kisses and hugs to his family. He even asked if he could help me do some chores. He is excited about his day ahead and sees humor in life. But more than his actions, his physical changes tells us all we need to know. He is smiling and laughing, he is walking with his head up and appears like a weight has been lifted off him.

Yesterday I took my son to see his therapist. His therapist stood back with a look of amazement as he watched my son crack jokes as he eagerly built a tower of blocks in his office. Our therapist commented on how “he really looks different”, that this wasn’t the same kid he saw in his office a week prior. You see the week prior, our therapist shared with me that my son was a very tough case, he was seeing behaviors he didn’t typically see in a child his age. Our son tested as being very depressed. He was greatly concerned for our son as he shared with me that my son wasn’t his most difficult case in his career, but he made his top 10 list! This wasn’t the kind of top 10 list we wanted to be part of. Before we left our appointment, our therapist asked if this is what our son was like when he was little, before he started showing signs of his illness and I answered with a smile, “Yes, it’s like we got our son back!”

So we are celebrating today, but we are being realistic. We saw these same positive changes in our son when he was put on Seroquel, but after about a month, it started having a reverse affect on him, making him more violent and depressed than we have ever seen him. We also are aware that medication can work for a while, then just stop working as his brain changes when it grows. So we know that there are no guarantees, but we are also learning that this illness is not like a race where you sprint to the end, but rather it is a marathon. It will be a long journey with many highs and lows, so we have learned to celebrate any victory and to rejoice with any improvement.

That being said, I’m going to do a “happy dance” and hug my son when he gets home today and suck in every smile and giggle he makes, for these are the gifts from God that I treasure more than gold.

Friday, March 19, 2010

Sibling Rivalry & Brotherly Love

All siblings fight, it’s a fact of life. But in our home, it escalates to a whole new level. When our son is irritable, he’s a challenge to be around. He’s mean, impatient, bossy and abusive. His younger brothers, age 5 and 7, have to deal with the brunt of this.

Now trust me, we try very hard to minimize this. But when one child has a mood disorder, things get out of control fast. One minute they’re all playing, then the next minute our son has bitten one of his brothers. During rages, he typically abuses his parents, but sometimes, especially in the beginning, he may target one of his brothers. When he’s not using his fists, he uses his words. There have been many times when our son has been locked in his room during a timeout, screaming at his little brother, “When I get out, I’m going to kill you”. To a 5 year old, this is a very scary situation.

My boys have had to master the art of “walking on eggshells”. They’ve learned early on that they have to be careful with their brother when he becomes upset, I’ve even seen them flinch as their brother stomps by.

Not only are the boys targeted from an emotional and physical standpoint, but the boys suffer from having their personal property destroyed. During a rage, our son will grab his brother’s toys and books, tearing them apart or smashing them to pieces. I can’t imagine what this must feel like for my boys, to feel so out of control and to suffer so much pain as a child.

Our boys have suffered socially. They’ve had play dates turn bad when their brother begins to rage and have lost friendships because their friends don’t like to play with their big brother. The boys have had special family outings cut short because their brother is overcome with anxiety in a public place and are unable to eat in certain restaurants because of their brother’s sensitivity to loud noises. At school, they have faced rumors about their brother because of his bad impulses and have had shopping experiences turn bad when their brother has become overwhelmed with stress over purchase decisions.

Then there’s the fact that they don’t always get the attention when they need it. I clearly remember a day when my son was raging for 3 hours straight. Now during those three hours, I was working to protect each of us, as well as property, while trying to calm their brother. In the meantime, the boys patiently played in the playroom, helping themselves to snacks. I felt so bad for them, it had been a long summer of rages and they had to endure so much already, but to also have to wait for the storm to pass to have my full attention was just another impact on their life.

Then you have the disturbing fact that my little boys have seen their parents abused by their big brother. They’ve seen the people that are suppose to protect them cry out in pain, bleed and be bruised by their brother. I can’t pretend to imagine what that must feel like for them, how frightening that must be. It really breaks my heart that this is their reality.

I also will never forget the day when my 7 year old was running through his brother’s room, hiding all the scissors that were left after a project, because he was afraid his big brother was going to use them to kill himself when his medication (Seroquel) made him depressed. This is a moment that I wish my child never had to experience, I wish I could erase it from his memory, instead, I hugged him and we cried in each other’s arms, as I reassured him that I wasn’t going to let his brother kill himself.

We’ve made a tremendous effort to help our boys cope with their brother’s illness. We’ve aimed to protect them by taking all the abuse during a rage. We’ve strived to protect their stuff, collecting it when he’s upset, to keep it safe. We’ve turned up music to hush the sounds of their brother’s screams and offered hugs and encouraging words to help them feel safe when they’re scared.

Socially we’ve tried to “split the herd” so to speak. We’ve started “Daddy dates” and “Mommy dates” where each boy gets a day away from the family and the stress of their brother. We also have started inviting the grandparents to have a day with our sick son, giving the other boys a break at home.

In addition, we’ve taken the time to express how sorry we are that they have to go through such hard times and have listened to their questions and concerns, we’ve heard their voice and acknowledge their feelings.

I know that we will never be able to undo all that they’ve had to go through and I know that this is so unfair that they have to live like this, but they do love their brother and pray that he will be healed. Our 7 year old prays regularly for his brother and he’s the first to defend him when his brother acts out saying, “It’s not his fault, it’s his brain that isn’t working right!” I believe that they will become more compassionate and patient people in the world. My prayer is that God will use this situation in their life to encourage them to do good in the world, to love unselfishly as they have already learned to do.

Working with the School

Today I had a meeting with the school principal to set up a 504 plan. This is basically a formal way of providing federal protection for my son while working with the school to create a plan of action to help my son thrive while at school.

I was pleasantly surprised to see how easy this all was. Our school was very compassionate and made a plan on how to reduce any stress caused by his illness. For those of you curious about what we did, here is a list of some of the things they committed to:

For his performance anxiety:
No school performance required. For classroom presentations, he may present with a small group or alone to just the teacher.

For his crowd anxiety:
Allow him to sit on the outside corners of his class when in large groups, giving him some free space.

For his social anxiety:
Sit our son next to quiet, more calm students to reduce stress caused by louder, more active students.

For his rages:
Allow him to get “new homework” if he destroys his pages when in a rage, he can get a fresh page to start over once calm.

For anxiety caused by challenges:
Allow him to take a break when he shows signs of being overwhelmed or anxious.

For his physical limitations caused by medication:
Allow unlimited bathroom breaks, water breaks, and permission to remove himself from extreme temperatures since this can be dangerous with his meds.

The goal of the school is to take steps to help our son to succeed academically. They hope that by following these accommodations, we can reduce his stress caused by his illness and create a better environment to grow as well as prevent disciplinary issues that may have otherwise developed.

Now I have to admit, when my son first saw a therapist, I had purposely hidden my son’s illness from his teachers and school. I was trying to protect my son from being labeled and teased by the other students. But as his illness developed, we have not been able to hide it from his teacher. In fact, it was his teacher that emailed us recommending that our son talk to a therapist because she was seeing signs of anxiety and social fears. It was then that I knew I had to open up and work with the school as a team to help my son. They have him in their care for about 6 hours, it was only fair to my son that they are working with me.

I can say today that I am glad that I have opened up. Now don’t get me wrong, this information is still confidential, only his teacher and principal are aware of his illness, but I am happy to have opened up and now feel much more support and hope for his academic success.

Impulses

Impulsivity: An inclination to act without thinking about the consequences.

Sounds simple...right?

This week we discovered how complicated this mood disorder symptom can be. Now that our son was off Seroquel and Depakote, we’re in a transition without proper meds and one of the many symptoms that returned was impulsivity. While at school, our son told the student next to him that she needed to give him money or else he was going to blow her house up. So as you can imagine, this student became frightened and the next day returned with money for my son. By the time the next day had arrived, he was actually surprised to see her hand him the money, but she insisted, so he took it. Well I don’t think I need to explain how complicated this got, but not only did we have to apologize to the parents, but we had to work with our school about the consequences.

When I asked my son why he did this, his response was “I don’t know why”. He wasn’t mad at the student, or eager for the money, he just acted on a bad impulse, without thinking about the consequence. As he said, “There’s a war inside my brain and the bad side killed the good side, then the bad side takes over and makes me do bad stuff.”

This was a very tough time for me. I realized that day that no matter how much I teach my son about kindness and loving others, there’s another force within him. And if he’s impulsive, no amount of parenting can prevent him from making bad decisions. This is tough to deal with now, but I’m terrified about his future. As he gets older, what impulses awaits? Will he have to face criminal charges someday? I feel sick even typing this thought out, but I know that I’m not alone. I know that most parents of mood disorder children have to face this fear and even worse, live it out. Personally, this has been a time of grabbing on to God and his promises. I feel that I’m doing everything I can to help my son, but I’m also aware that there are things just too big for me to handle, and I have to lean on God to get through it.


Starting and Stopping Depakote

After the doctors decided to stop Seroquel, since it was making him experience suicidal thoughts and violent rages, they switched him to Depakote. We were optimistic about this switch since we were moving from a antipsychotic drug to a mood stabilizer. Mood stabilizers are often the front line approach for helping people who are bipolar. Once the mood is stabilized, other drugs are added on top of that to help address other issues such as anxiety, depression or for some ADHD.

Our hopes for Depakote were dashed quickly when our son experienced an allergic reaction to it. He became itchy all over and felt his airways tightening up. We immediately gave him Benadryl as we drove him to the E.R., but fortunately by the time we arrived, the Benadryl had kicked in and he was feeling good.

So needless to say we needed to go back to the doctor to look for another medication. In the meantime, our son was only on Tenex and as a result, his awful nightmares came back immediately. He woke up everynight with frightening dreams of being killed and parts of his body being ripped off. Every morning we awoke to find him back in our bed snuggled between us to feel safe.

The next thing we noticed was how hard it was to sleep without the medication. One morning he woke me up at 4:30 am, bright-eyed, complaining that he couldn’t sleep. So to help with this, the doctor recommended we try using Melatonin as a sleep aid.

The other symptom that returned was his anxiety, he would start his school day off with the feeling that he needed to throw up as we approached his school and he would feel sick during class.

But the most painful symptom to return was his impulsive behavior. I’ll be writing more about that in my next blog, but for me, it was yet another moment of feeling like I was losing all control over my son to his illness.

During this awful week, my son brought up a very insightful point. As we were driving to the E.R. after he had an allergic reaction to Depakote I was explaining to my son that we needed to try another medication since this one didn’t work for him, I was also reminding him that the doctor told us that finding the right medication could take some time and that we needed to be patient. My son responded “Since the doctor’s are just experimenting on me to find the right medicine, what happens when they give me a medicine that worked for one kid’s brain, but it hurts me instead?”

After hearing his response I thought to myself...yeah son, I’m worried too. I totally understand my son’s fears. There is no perfect science to this and it is so hard to expose my son to so many unknowns. Especially after reading the possible side effects, but beyond that. Each drug added brings more typical side effects, such as drowsiness, headaches, stomach aches etc., all as his body tries to adapt to the new medication. Then, in addition to that, he has to endure the blood tests to make sure his liver isn’t being damaged or that his white blood cell count isn’t dropping. Also, as you can imagine, this stuff tastes awful, and he is too scared to swallow a pill, so taking these meds all throughout the day isn’t a picnic either. Which reminds me, we have even set our phone alarm to sound at every medicine time, he is now taking medicine 3x’s a day and a missed dose can cause harm to his body. This is a lot for one 9 year old to deal with, I am just grateful that he is so willing to participate and I pray everyday that we will find him the right medication, and as a result, my son will experience an abundant life filled with joy.

Saturday, March 13, 2010

Who Do You Tell?

I once read “If your child has cancer, people bring you casseroles, but if your child has a mental illness, they stay away.” I’m sad to say that we’ve faced this in our own community. Our son lost his best friend after a rage with me. Once I explained the situation to the parents, they ended their friendship. This is still painful for my son today, almost 3 years later. He still talks about this child, draws pictures of her and still tries to find her new phone number. If I could restore this relationship, I would in an instant. My heart aches for the loss he feels.

On the other side, we’ve been blessed to feel the love and support of family and friends that have stepped in to help our family when we needed it most. But before we could accept this blessing, we had to open up and share our story with others. This means exposing the details that are so hard to share, so that they can understand what’s hard to imagine. If you’re struggling with this step, I encourage you to seek out those you trust and open up.

To be honest, I’m reluctant to open up to others because I’m afraid of being judged. I don’t want people to think I’m a bad parent, or that we ruined our son because we let him play video games and eat sugar. I’m also afraid that people will judge my son, thinking he’s a bad kid. I don’t want my son “labeled” and treated poorly because of it. I’m concerned that my dear friends will stop spending time with us because they’re afraid of my son.

Then there are the times that I’ve wanted to tell others about my son’s illness to create understanding and compassion for my son. Because of my son’s poor impulse control, he hasn’t always been the best playdate. I have, on more than one occasion, heard very judgmental comments about me being a bad parent because of my son’s behavior. It’s times like these when I wish I could just tell others our story so they can understand and forgive.

Lately, I’ve felt very broken, our recent challenges with our son have been so overwhelming and I’ve felt so isolated in trying to cope with it all. It was my Mother-In-Law that reminded me that “You can’t go through this alone”. She was right. I’ve started to open up about our pain, heck, I even started a blog to get things off my chest. I’ve leaned on my family and opened up to my friends. And you know what? I feel so much better today. I may feel weak, but I feel like I’m being put back together, one piece at a time by the strength of God and those around me. I am truly blessed.



Thursday, March 11, 2010

Mother’s Intuition

It appears that my mother’s intuition was correct. The doctors are finally agreeing with me that my son’s recent rages and desire to kill himself was brought on by the Seroquel medication he was taking. At first, they didn’t believe that it was possible, since they haven’t seen this reaction in their other patients, but after careful review, they agree with my mother’s intuition.

I think this is a good reminder that as my son’s mom, I am closest to the situation, bascially, I know my son best. I need to be more confident in my own ability to know what my son needs and what may be causing him harm. That doesn’t mean that I have all the answers, but I do bring something to the table that has value. Also, I think that it is important for us parents to trust our own instincts, even if that means telling the doctors more than once.

Wednesday, March 10, 2010

Searching for a “Name”

When I found out that I was expecting a baby boy, I quickly bought one of those “baby name” books. I spent hours considering many names, looking for that perfect name that would introduce my son to the world. This was such a happy time in my life. Tonight I am looking for another name, but this search lacks all joy.

The psychiatrist is using the name “Bipolar” for the first time to describe my son’s illness. After the recent intense rages, the doctor has decided that my son may have Early-Onset Bipolar Disorder. Last week the therapist was thinking that it was “Depression”, but today they feel that these violent rages wouldn’t occur with just depression.

I don’t know why this matters to me, but I so want a “name”. I want a “name” to define the hell we’ve been living through. I wonder if it’s because it will make everything legitimate. Will a “name” help those around us understand what is wrong with our son? Will it help me understand my son? Will having a “name” finally get him on the right meds to make him stable? Will I find the right support groups if I now have a “name”? This may seem so silly to others, but I so desperately want a “name” to give me some control on all this madness. If I have a diagnosis, I can finally know which direction to run towards.

The reality is, that most families have to wait years and sometimes go through many different diagnosis before they arrive at their answer. And I am not a patient woman, so this just drives me nuts!

He Grabbed a Knife!

Things continue to get worse. Tonight my son slipped back into depression (with energy) and grabbed a knife. This all started when he was told that he couldn’t watch tv where his brother was sleeping with the flu.

Thankfully my husband was home and was able to chase him down and take the knife away. I don’t know if he would’ve actually done anything to himself, but I can’t trust his actions. I never know what’s coming next. Before I go any further, I’ll just clarify that the knives are now in a locked box and it’s like a punch in the stomach to say that, since I never imagined that our life would come to this.

My son then slipped into a very violent rage that lasted for over 1.5 hours. We had to hold him down while he bit, kicked and hit us. My husband was literally beat up tonight by his 9 year old son. My son had a lot of physical energy and it took him a long time before he wore himself down. The entire time my son was screaming for us to let him go so he could “go kill himself”.

I have a gut feeling that his reaction to “kill himself” lately is related to the Seroquel he’s taking. Ever since they increased his dose, we’ve had 3 major episodes of depression mixed with very physical rages. I mentioned this to his doctors after the first two rages, but they were not convinced yet. The strange thing is that when they put him on this medication they had us read through pages of side effects and one of the pages warned of this kind of behavior as a side effect from this medication. It just frustrates me so much that the doctors don’t spend more time paying attention to the details that I share with them. But I’m not a doctor and this gut feeling may be way off base, but I can’t let my son go through another violent episode. What if next time he really does hurt himself?

After my son calmed down, he wanted to talk with me and during that discussion he shared how he just wanted to die and that it would be better for all of us if he was gone since his anger problem would go away.

This just breaks my heart. How miserable must my son be? Only hours prior he was sharing the award he won in school today, had a great playdate with a friend and we hugged one another as he shared what a good day he was having, then it all changed so fast. I can see how upset my son must be about his “anger problem”, it steals his joy, it robs him of the childhood that he should have. It’s so bad that he wants it all to end.

Tomorrow I’m going back to the doctors, looking for more answers. At times it feels like things are only going to get worse, but no matter what, I’m not giving up, my son deserves a happy ending.

Wanting to Die

“I need to kill myself!”

These are the horrific words my son screamed as he ran from me in a sprint. He was in a mental state that I’ve never seen before. It all started when I discovered that he shoplifted a piece of candy from a store. When I asked him about it, he just lowered his head and admitted everything. He then became overwhelmed with guilt and sorrow, even screaming for me to call the police so they could lock him up since his brain makes him do bad stuff. 

Now, I know that some of you may be thinking that my son was being dramatic to get out of trouble. Believe me, I know what that looks like and this was nothing like it. I immediately called his therapist for guidance on how to handle the situation. You see, this was the second episode of seeing my son slip into a deep depression. The last time was less than a week ago and I knew I needed to be prepared. But nothing prepares you for seeing your kid slip away mentally.

After getting detailed instructions from the therapist, I went to help my son. The more he thought about his shoplifting, the more he hated himself and starting begging me to “just kill him”. He cried out that there was “no more good left in his life” and that all he ever does is make mistakes. 

Then, unexpectantly, he bolted out of the room, screaming with intense urgency “I need to kill myself”. I immediately started sprinting right behind him, making sure that I was only a step away so I could prevent any harm he might do. I didn’t know if he would jump over our balcony or if he’d run himself into the sliding glass door. He was so fast and erratic. When he got downstairs, I then had to keep him out of the kitchen where the knives were. This went on for at least 15 minutes. Whenever I got close, I would talk calmly and remind him that he was so loved and that I wouldn’t allow him to hurt himself. My son just cried out, then again would be overcome with an impulse to sprint to another room screaming that he was going to kill himself. 

As he started to wind down, he instantly became very frightened. His scream sounded primal, I even saw his pupils enlarge as he screamed that his “eyes were playing tricks on him” and he was seeing a monster. I continued to reassure him of my love and that there was no monster until he eventually calmed back down. 

I don’t know if any other parents reading this have been in this type of situation. It’s like a car accident, you just go through the motions while you’re in the middle of it and after it’s all over you breakdown and sob.

After this incident, I was struggling with two things, obviously, I was deeply concerned about what was wrong with my son and how we’re going to help him. The other issue was, how do I raise my boy to grow up to be a good man someday when I can’t even teach him that shoplifting has consequences. I know that in the scheme of things, this is such a small issue, but as his parents, it’s our job to teach and prepare our son for his future and this disease has changed everything. How do you parent a child that can become unstable is so quickly? Where do we go from here?

Monday, March 8, 2010

Bleeding with a Broken Heart

I asked my son to brush his teeth, he refuses, so I hold him by the hand and take him to his bathroom, then BAM! I’m hit hard in the face by my son head-butting me, a common move he uses when he becomes resistant. I’m hit hard and scream out in pain. It feels like my teeth have been chipped and my tongue is bleeding. My husband rushes over to handle my son, who’s going into a rage, while my 7 year old son has locked himself into the bathroom to protect himself from his brother. My youngest son, 5 years old, is in his room crying that he’s scared. After wiping the blood from my mouth I take my two younger boys and close ourselves into their room where I read and sing to them to help them feel safe, even though we can all hear our son’s screams from outside our room.

This was a very tough evening. I’d been hurt before, but he’s never drawn blood. Something about seeing my own blood, caused by my son’s actions was very disturbing to me. I felt very angry and very sad, my heart was broken.

What makes matters worse is that this moment didn’t become a “teachable moment”, where my son learned a lesson about how wrong it is to hurt others. Instead, we all go into survival mode, waiting for the storm to pass, while we work to protect the other kids. After our son has recovered from the rage, you don’t want to “lecture him”, because that would just ignite his fire again. We’ve been taught to give the timeout, then once it’s over, move on and move forward. Later on, if you address what he’s done, it’s like talking to a different kid. This now relaxed kid feels bad for what had happened, would never want to hurt me, but even he knows that he can’t promise that in his next rage, he wouldn’t do it all over again.

Saturday, March 6, 2010

Let’s Be Real

I just realized that in my last post I was giving “just the facts”, but I have to be real for a moment and share how devastated I was to find out about my son’s trouble at school. My son has tried so hard to keep his illness a secret at school. And as parents, we’ve felt blessed that his mood disorder wasn’t causing problems there. In fact, just weeks prior, we celebrated with pride his student award for being kind to others.

I’ve talked to other moms, with mood disorder children, sharing their stories of how the school contacted them on a regular basis for discipline problems. It wasn’t uncommon to hear that it started as early as preschool. So I realize how lucky we have been to be “worry free” when it came to my son’s education. But when I got the call from the principal saying that my son was in his office for writing a letter telling another child to “die”, my heart sank.

I was sad for my son and I was sad for the innocent child that received the letter. And honestly I was sad, feeling once again the reminder of how complicated my son’s life will be with a mood disorder. This isn’t an easy fix. This is a long journey, with lots of lows. I was reminded that my son’s life may be filled with poor decisions from impulses brought on by his illness. But as I explained to him that day. “We will always love you, even when you make mistakes, but we won’t be able to protect you from life’s consequences.”

And since I’m being real, I can say that I felt jealousy that day towards other parents. Watching them with their kids, free from the black cloud of a mental illness.

Starting Seroquel

After about 6 months of being on Tenex it became apparent that my son needed more help with his brain’s chemical imbalance. Even though the Tenex helped to reduce his rages, my son became more intense and dangerous during a rage. Instead of focusing on just destroying an object, he became more intent on hurting others. We also noticed that his anxiety was increasing, so much so, that he was leaving his classroom on a regular bases because his stomach was upset. His teacher also pointed out that he was withdrawing socially among his peers. He also was unable to participate in any fun family events that had a gathering of people without feeling overwhelmed. Then the nightmares started to intensify and he began to sleepwalk more. So once the therapist determined that he did indeed have a mood disorder, the doctor that manages his medicine (his psychiatristprescribed Seroquel. 

Seroquel is a newer antipsychotic drug. This drug is considered to be safer than older antipsychotic drugs with less side effects. Especially the weight gain that is so commonly seen with drugs used in children. However, this is a big step from the Tenex, being that this drug is a lot more powerful. The possible serious side effects were scary. Reading things like suicidal thoughts, enlarged breasts, seizures and facial distortions made my heart race. But it goes back to the basic fact that my son needed help, he couldn't continue on this current path, so we had to trust our doctors.

I will be honest and say that it was a little disturbing to see how quickly my son was sedated by this medication. The first night he was knocked out within 30 minutes of taking it. My son was a little scared as the drug took affect, just feeling the drowsiness sweep in and he couldn’t fight it. But by the second night he liked this affect since it helped him go right to sleep, something that wasn’t always easy for him.

Our first reaction to this medication was joy. We got our old son back, he was restored to his formal self. He woke up in a pleasant and happy mood, no more punches and kicks as he got ready with his family. He was more talkative, excited to share his life and details about school. He also became more sensitive to his brothers, making an effort to share well and even help his little brother throughout the day. Our 7 year old commented, “I’m having a lot of fun playing with my brother now that he is nice again”. Our son said that he didn’t feel anxiety at school anymore and he wasn’t having anymore nightmares. His sleepwalking completely disappeared. But more than all those things, our son actually “looked different”, it looked like a weight had been lifted off him. He had a radiant smile and we were seeing it often. We were overjoyed.

When I asked him how he felt with the new medicine, he said “I use to have to hold my anger in all the time, but now I don’t even feel anger, I feel happiness!”

Our son had such a dramatic turnaround that the psychiatrist decided that we should try removing the first drug by reducing his pills slowly over the next month until he was completely off them. She figured that since Seroquel was so strong, it wasn't necessary to have the Tenex.

So one week into our 1/2 pill reduction we were caught off guard by our son coming home from school very agitated. He had trouble getting through his homework and was mean to his brothers. He even became impulsive at night, running and hiding from us instead of getting ready for bed. Then he ran and bit his younger brother for no reason and I had that gut feeling that something was going wrong with the drug reduction. I could even see it in his eyes. If you are a parent of a child with a mood disorder, you may know what I am talking about. When my son gets in a certain mood, he gets this glazed look in his eyes, like he can’t be reached, no amount of words can bring him back. Instead he is ruled by an impulsive energy. Unfortunately this impulsiveness was a bigger problem than I originally thought.

The following day I got a call from the school principal. My son, who never before had been in trouble at school, was in his office. Apparently my son had written a letter to another student telling him to “die” in several statements. Of course this action is a serious matter in any school. But under the circumstances, since my son was only a 3rd grader, and had been trouble free, he was only required to write an apology letter to the student. If he had been a 4th grader, it would have been an automatic suspension.

When asked him why he did it, he said “I don’t know why, I couldn’t help it. I need my old medicine back!”

So I immediately contacted the therapist and psychiatrist describing the situation and the behaviors I saw the night before and they all agreed that he needed to return to his normal dose of both Tenex and Seroquel. It was easy to see that the Tenex was still playing a role with his impulsiveness, so once removed, it became harder for him to maintain control.

I wish I can say that everything returned to normal, but it hasn’t. Ever since we reduced the Tenex dose, our son hasn’t been well. Even though he is now back on all his regular doses, we haven’t returned to that one magical month where are son was filled with happiness.

In His Defense...

I just have to mention that anything I share on this blog is intended to be from my perspective, as the mother, so if I appear to be complaining about what I am going through, I am very aware that what my son is experiencing is so much worse. I can share some of his words, but I will never be able to share what he is feeling inside. I realize that his childhood is being ambushed by this disease and if there is anything my husband and I could do to take this away from him, we would in an instant. Though I feel pain for myself and the rest of my family for all we are going through, it is my son who I pray over everynight for complete healing. 

Friday, March 5, 2010

Journals, Binders & Charts, Oh My!

Early on, I received some great advice, to document our son’s behaviors. This continues to be a useful tool in my life. If you are just starting to face challenges with your child, I recommend starting today. Sometimes it is the small details or the patterns of behaviors over time that help to define the illness.

In the beginning I would journal all the details that would lead to the rage, along with the events of the rage. But it was exhausting to spend time reviewing all of the details when it was still fresh in my mind and my stress levels were still high from the recent outburst. Now my therapist has me fill out a chart, giving quick details such as the date, time, event (like dinner time), what my son did and how I responded. Over time it was this chart that helped my doctor determine that my son was suffering from a mood disorder. He could tell that it was random behavior. He could also conclude that the rages weren’t caused by a particular trigger such as sibling rivalry or homework problems. It has also been used to measure the effectiveness of our son’s medications by observing the frequency of outburst in a given month.

Another advantage for recording behaviors is to make sure details aren’t missed. It is easy for therapists to forget details given six months ago, yet it is these details that can complete the picture of what your child is suffering from. Just today, during my son’s therapist appointment, our doctor forgot all about our son’s crowd anxieties. His first advice was to take our son to the mall several times a week to help him desensitize to his fear of crowds. But when I reminded him of several occasions where his reactions to crowds were so extreme he went into panic attacks, becoming sick, running out of stores and even swinging a punch at a complete stranger, our doctor changed his perspective.

And one final piece of advice, get a BIG binder to save all those research articles, behavior charts and drug information. This is a long road and there is going to be a ton of paperwork! The more organized you are, the easier it will be to be your child’s advocate.

Rages

I never imagined when I held my newborn son that someday I’d be trained by a therapist how to “hold” my son while he’s in a rage. If you’ve never witnessed a child you love go into an uncontrollable rage, let me try and paint you the picture.

You’re starting your morning out by feeding your children when you realize that you’re all out of bagels. Now most parents would just roll their eyes, add bagels to the grocery list, then search for another food to serve for breakfast. But for a parent with a mood disorder child, your reaction is much more intense. You start to feel panic and your heart races a little (as mine is now as I recall this common event), then you jump into deep waters as you tell your son that “sorry we’re all out of bagels”. Then you switch over to your defensive mode as you prepare for his response.

Now on some days, you’re elated to see that it’s no problem and that oatmeal will be just as good, then other times you watch with fear as your son starts to rev up. His tone becomes louder and he throws his dish across the counter as he knocks his chair over yelling “FINE, THEN I’ll GO HUNGRY SINCE THERE’S NOTHING TO EAT!!!” Then the behavior intensifies as he runs upstairs. As you follow, to get him back downstairs, he starts to throw stuff at you, then purposely knocks over furniture and begins throwing things at his brothers. In hopes to stop his progression, I use 1,2,3 Magic (a timeout method taught by our doctor). Once he gets to “3”, I tell him he has to go into a timeout. That’s usually where things become more severe. Within moments he’s punched or kicked one of his innocent brothers or myself. As you try and physically stop his punches by placing him into a hold, he turns into a wild animal. He begins to scream uncontrollably, he even begins to growl at you, while his head thrashes around, trying to “head-butt” you or he stretches to bite you, which he has many times. He uses his feet to stomp on your own feet and kicks at anything he can. With all the adrenalin that’s pumping through his body, he becomes much stronger than he normally is. The entire time you’re trying your best to remain calm (because if you escalate, he’ll follow). Having been there before, you know that things can get worse. You become afraid of your own child, yet are desperate to protect your other kids, taking all the abuse you can.

Being a petite woman, my son is fast approaching my height and it’s physically challenging to maintain control. I’ve been trained by our therapist to become a wrestler, to maneuver my body around my son’s so I can safely hold my son in a position while he fights against me, as we wait for his body to calm back down. This sounds so much easier than it is, I’ve found that I’m not very good at wrestling. In fact, recently I received a “head-butt” to my face that caused me to bite my tongue and bleed. I should’ve kept my head to the right of his, but when you’re in the moment, it’s so difficult to remember those small, yet important details.

Last summer, we were taught to put our son into his room and keep the door closed so he could let his rage out in a confined space away from other people, keeping us all safe. In our early attempts to do this, my son slammed a chair through his door, yep, I had chair legs pointing at me through a gaping hole he put in his door. After that, during timeouts, he’d use this hole to stab his play swords at me through the hole as I held the door. But quickly our therapist advised us to put particle board on the entire inside of his door so he could beat up the door without coming through it and to use a lock on the door to avoid the constant struggle of holding him in. The less interaction he had, the quicker he’d calm back down.

My son’s rages can be felt in advance with subtle signs such as irritability, rudeness or negativity, but unfortunately, you can’t tell the moment that will cause the explosion. Will it be the word “no” when he’s told he can’t have more cookies, will it be losing a game with his brothers, will it be over feelings of frustration over his homework or will it be the fact that I don’t have anymore bagels? Without knowing, we’re all learning to walk on eggshells.

But one thing is for certain, after a rage our son will return to his sweet, respectful and considerate self. If you asked him why he was attacking his mom, he’d say “I don’t know why.”

As I type this blog, it’s ironic that I was just interrupted by my son going into a rage. At this moment I’m still recovering. Thankfully, my husband just came home and took over. I’m sweating, my heart is pounding, my stomach is sick from the stress of the situation. My hand is swelled in pain from trying to hold the door closed after my son broke the lock on his bedroom door after I put him into his timeout. I was bit, hit, kicked. Shoes were thrown at my head and a toy with a sharp tip was held up like he was going to stab me with it. I was able to take it away. I know that downstairs, where the rage began, our house has been messed up with things thrown about. Emotionally I feel abused, I’m trying not to cry, I feel very sad for my other children who heard me screaming in pain. I’m still upset with my son right now, but in about 30 minutes, I’ll be able to let it go and once again remember that this is his illness, not my son that just attacked me when I tried to send him into a timeout for being mean to his little brother.

Starting Tenex

After about 2 1/2 years of monitoring our son’s behaviors our doctor prescribed Tenex to help our son control his impulses and explosive behavior. They felt his brain was too sensitive to stimulus, which would cause an overreaction of the “fight or flight” response in the part of the brain called the amygdala. This medication, which originally was created for high blood pressure in adults, was proven to be effective in helping kids with impulses and rage.

We were impressed with the immediate changes. Our son wasn’t as explosive as he use to be and the frequency of the rages had reduced. It was amazing to us to see such big changes from such a small pill. The only side effect that he felt was sleepiness in the beginning, but after his body got use to it, he seemed to be free of side effects.

I wish that was where our story ended, but unfortunately, after about 6 months, it was clear that my son needed much more help with his violent outbursts, anxiety, impulses and sleep problems.