Wednesday, January 22, 2014

Interviewing Mama Bear



Today I got an email asking me some good questions and I thought it would be a perfect post since many of you have started reading this blog long after I started writing it. I’ll answers the questions below and if you have more, leave them in the comment section below and I’ll try to answer them.

I know this is a long post, so if you’re short on time and you’re already familiar with my story, skip to the last question where I share a very positive update about my oldest son you won’t want to miss!

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I’m new to your blog and I’ve been reading past entries to “catch up”. I now have a few questions:

1. When did you first start seeing symptoms (what age was your son)?
I specifically recall a dramatic difference in my oldest son’s behavior when he was 7 years old. Prior to that, I do recall that he was “strong willed”. He also had separation anxiety as a baby and as he got older he started to experience night terrors. I also remember that he didn’t like the children’s reading time at the library. I thought this was unusual since all the other kids were glued to the storyteller and my son seemed disinterested and didn’t want to participate. We saw the same thing at birthday parties, they made him miserable. Looking back, this may have been the early signs of anxiety and sensory issues—crowds and social situations were too much for him. He also was sensitive to sounds and food textures. I remember in kindergarten when he fought doing his homework. He also didn’t want to perform any of the school performances, instead of singing with the other kids he would just stand there refusing to participate. As the school year came to a close, I recall a strange incident at a friend’s house when it was time to pick up the toys. At one point my son was hiding under a table, screaming and I couldn’t get him to come out. He had an odd, impulsive energy about him. I remember thinking, “What is going on with him?”

By the time he was in first grade, the teacher started reporting that he was putting his head down in class, refusing to participate and covering his head with his hood. She said that during circle time he would isolate himself from the other kids. We also heard him saying things like, “this is the worst day ever”, “I have no friends” or “I should just cut my head off”. This may have been the first time we started to see depression. It was during this year that we started to see rages at home over homework for the first time. He would become explosive, irrational and very angry over the smallest things. I remember a moment when I looked around the house and saw furniture tipped over, and my son was on the countertops in my kitchen acting like a wild person after hitting and biting me during a 3 hour rage. I knew then that this was serious. I remember that the behavior seemed so out of line with my son’s previous behaviors that I even started to question if my son was being molested at school (he was going to a new school). It was the only place where he was out of my sight and what I was seeing was so dramatically different. My investigation lead to nothing, but the rages continued.

What I started to see was Dr. Jekyll and Mr. Hyde. At times we would see our loving, sweet boy who wanted to please his parents and at other times his smile disappeared, his personality twisted into one that was very mean, hurtful, destructive and violent. It got to the point where we could tell by the look on his face and the tone of his voice who we were dealing with. We were definitely walking on egg shells.

Then over the summer, while on a family vacation with relatives, my son went into a rage in front of everyone. At one point we had him in a room behind a closed door and he was screaming that he wanted to kill everyone. Everyone could hear the screams and violent bangs against the door. After the rage, I clearly remember my son staring out the window and quietly saying, “I’m God’s mistake, I wish I was dead, I should never have been born.” When I came out of the room with him, I remember my mother-in-law comforting me and giving us feedback that what she saw was not normal kid behavior and she encouraged us to take the first step in seeking professional help.

I thought at this point it would be helpful to share that my son also recognized these changes in himself. 

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. This is what he said:

“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 son was watching a home video of himself when he was younger. 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”.

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. He described himself as having two brains. He said that he had a good side and a bad side and that the bad side takes over and make him do bad stuff.


2. What is the longest period of time that a medication has “worked” for your son?
I’m thankful to share that we’re currently in that time. Ever since my son started Lithium in July 2011, we’ve all seen a dramatic improvement. Only 12 days in on the new medication my son said, “I feel born again.” He started smiling and talking more, even wanted to plan playdates (which was huge since he was isolating himself prior). He said that he was feeling happiness for the first time. After the start of Lithium he went 57 days straight without a rage. This was a record back then, with rages being almost daily, if not several a day. Looking back, I will say that when he does rage, it feels different now. There is a different quality about it, it’s better. Today rages are so rare. I have to go months back in my charts to find one. I also see that they are clearly triggered by stress and his inability to manage stress. Lately, our modification plan has put an end to his rages. Just this weekend, he shared that he wanted to throw something, but chose to go for a bike ride instead to release his anger in a better way. Looking back, I can see how his rages had became a habit, the body’s programmed response to anger and stress, scientifically it has to do with neural pathways in the brain. Retraining the brain takes time and thankfully we’re headed in the right direction. 

(This is why I’m an advocate for early intervention. The sooner the child becomes stable, the quicker the neural pathways are addressed. Thus minimizing habitual behaviors in the future—old habits are hard to break!)


3. How many different meds has he been on?
He started on Tenex. Once his rages increased and he was diagnosed with a mood disorder, they added Seroquel. It was a major failure, making him suicidal and very depressed. We quit after a month and then added Trileptal, a mood stabilizer. We saw success, but over time he needed more stability. The doctor then added Depakote, which he quit after one dose since he had an allergic reaction. We then tried Lamictal, but his arm would feel numb, so we quit after a week. Then the doctor tried Lithium. It was a success and continues to be. My son also takes Melatonin at night to help with the horrific nightmares. Currently he takes: Tenex (helps with his impulses), Trileptal (helps with his Anxiety), Lithium (mood stabilizer) and melatonin for sleep. I never imagined that my child would be on medication, but ask him if it makes a difference, his response is, “You’ll have to kill me to take away my Lithium!” 

Just reading through my old notes to make this post reminds me of how much better my son is thanks to medication. 
(Please don’t use as medical advice, seek professional direction from a Psychiatrist.)

4. What books or resources have been the most helpful for you?
Two resources that are a must read are Raise Winning Kids without a Fight by Dr. William Hughes (Behavior modification plan for difficult-to-raise kids. It’s made a huge difference in our home.) Also, Magic 1,2,3. I’m always reading, I can go on and on about resources, hmm… maybe a future post...

5. Is there a light at the end of the tunnel? I know you can’t cure this, but have you seen consistent improvement in your son’s symptoms?
YES!!!! That’s one of my favorite things about my blog. My post are getting boring, well, because things ARE getting so much better. I really feel that most days I’m out of the trenches. Not only have the medications made a tremendous difference, but we’ve learned so many skills, my son included, that we didn’t have in the beginning. Also, my son is maturing and this is helping. It doesn’t mean that he doesn’t have a bad day or that he’s not sensitive to the world, but rather he’s better able to manage his illness than when he was younger.

I’m so incredibly proud of my son. He continues to work on his challenges and he always gets back up after going through a difficult episode. His resilience is mind blowing! Today he’s better at communicating, being social, having self control, controlling his anger, not raging, doing therapy techniques, maintaining boundaries that keep him healthy, knowing his limits, experiencing joy, love and fulfillment.

Before I finish, I wanted to share a small example that speaks volumes. If anyone has followed this blog for sometime, you’d know that we’ve had major battles in getting my son’s blood drawn. In one episode I recall where my husband was kicked in the head the entire time while driving my son to the hospital. He was seriously concerned that they were going to get into a car accident along the way. While at the hospital, my husband had to restrain my son while they drew his blood. By the time my husband came back, his arms were covered with bruises and scratches from my son viciously fighting back. Well this week, for the very first time, my son walked into the injection station, while I stayed in the waiting room and he had his blood drawn all by himself, at his own will!

Now that my friends, is miraculous improvement. 

And we’ve only just begun.

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If you have more questions, leave them in the comment section below, you can also email me at mysonhas2brains@gmail.com

9 comments:

  1. The last paragraph makes my heart happy :)

    Love to you all!

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    1. My grandson is one of the bravest 13-yr. olds I know! I am so proud of him and proud of you too, Mama Bear.

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  2. I don't think improvement is boring!
    I'm very glad your son seems to improve and very glad lithium seems to be his wonder drug, barring the blood tests. I'm happy to see an interview with you.
    Best wishes and positive vibes.

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  3. My posts have gotten boring too, Praise God! But I have started writing again. Just because I feel a certain responsibility to write. Glad all is going pretty well!

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  4. So glad you are writing again, we missed you when you were gone. Sometimes it's nice to see normalcy, it gives hope and shows proof that things do get better.

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  5. Here's to "boring" posts! It's been a while since I stopped by, not because your more informative and less dramatic posts are boring (they're not) but because things have been calmer for me too and I find I have less need to hear that I'm not so alone.

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    1. That's awesome to hear that you too are enjoying a calmer season, it's pretty terrific!

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