Thursday, November 14, 2013

When the Past Starts to Fade

As a parent raising a child with a mood disorder, I’ve experience a lot of ups and downs over the years. As things get better, and thankfully they have, something peculiar starts to happen. I start to wonder how bad things really were.

I don’t think this is entirely uncommon, I mean one of the greatest hazards with people on medications is that they start to feel better and eventually forget how sick they were and quit their meds, only to later realize that they can’t function without them.

I’m not saying that I want my son to quit meds or anything, in fact it’s far from it. But as a mom I’m always asking, are we doing the right thing? Are we treating his illness as we should? Did we make the right decisions in the past.

I don’t know that I’ll ever get the answers to all those questions, instead we take it one day at a time. But I’m thankful today for all that I’ve documented over the years. When I question, “Was he really that sick? I don’t have to rely on my memory, instead I can pull out my behavior logs that I started over 4 years ago and read day-by-day what we were dealing with.

If I wonder how bad things got, I can pull up a few videos I recorded during rages or times of psychosis and see for myself, years later that, yes, things were really that bad.

To my own surprise, I’ve written 556 posts over the past 4 years. If I ever wonder what my thoughts were or what decisions we had to make, I can read for myself, it’s all there in my blog.

Does this make a difference?

Yes—for me it does. Life can make the past fade and emotions can twist your memory. But I can praise God now that after all these years, we are doing the best we can.

This week I contacted my oldest son’s psychiatrist about getting his Lithium levels checked since lately he’s appeared depressed. As he says, “I just haven’t been feeling happy for about a month.” The recent rages—even another one last week—have demonstrated that he indeed is struggling.

As I pondered the possibility of a medication adjustment, one that should be expected as he enters into puberty, I was struck with a passing moment of fear.

What if these meds hurt him. 

This obviously wasn’t the first time I’ve considered this, this has always been part of the equation when it comes to making a decision about medications, but none the less, it’s a real concern parents like myself have to face. We face it not once, but for the life of our child.

At times, the weight of this concern can lay heavy on my heart.

Tonight it was.

But then I sat at my computer and I pulled up a video of my son at the tender age of 10 (before Lithium). I watched with intensity as I saw my young child thrash around on the ground in a rage that was an hour in the making. With fresh eyes I saw suffering to a degree that most parents will never see. I saw my son begging to die.

As he thrashed on the ground, swinging punches and trying to bite his Dad, he screamed out,

“Nothing is working, so why can’t I just kill myself!”

“My life is useless!”

“I would be better dead than alive!”

“I just want to kill myself!”



I started to cry.

I remembered.

There are no easy decisions. As parents trying to make the tough decision about medication, it will often feel like there are no “right” decisions. There will always be risks involved. There are no guarantees. I don’t know how our story will end. But tonight I can rest with the peace of seeing with my own eyes, why years ago we put our child on medication.

Because he was suffering.



* * *

If you’re a parent who is facing for the first time a child with unstable behavior. I highy recommend that you keep a journal or track behaviors in a mood chart. Over the years, these notes have not only given me peace, but they have been used to track medication effectiveness and symptoms through the years. My son’s mood charts were paramount in my son getting diagnosed with a mood disorder, they along with his escalating behavior showed the therapist day-by-day what was happening. As a parent, these records have been a huge hidden blessing.


15 comments:

  1. Oh my gosh, I SO relate to this post and am actually working on piece related to this subject right now. Thank you for sharing your experience, Mama Bear.

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    1. I’m so glad you can relate Dorothy, please share your piece when it's done, I would love to read it!

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  2. Hi Mama Bear-

    I have always connected with your blog and continue to check in to see how things are going for you. My beautiful daughter continues to do well- at college and weaned off Seroquel this past summer and is now on "only" one med- wow- YAY! but how often do I question myself and say- "maybe I should have just let her ride through- did the meds (antidepressants) make her worse or "kindle" her???? Then I think back and remember and know that I couldn't ignore the fact that she too wanted to die at 14. So thank you for yet another post that shows that we are all connected, that we all have the same love and concerns for our children. And we will probably always question what we do- but so comforting to know we are not alone.

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    1. I was really moved by your comment, thank you for sharing—yes, it does really help to know that we are not alone. I am thankful to share this journey with you E.

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  3. I can also relate to this post. My husband and I were just discussing this very subject. I don't regret putting my child on medication. Just like you said in your post; they were suffering. And we just couldn't stand to see that anymore. Now, his meds are stable and he is doing quite well. He is 11.

    Shari

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    1. I’m so glad to hear Shari that your son is stable and doing well. Now he can focus on growing up and enjoying his childhood.

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  4. I just found your blog and I have a feeling I will be up for a long time tonight reading. My daughter is 8 and was adopted from Ukraine 3 years ago. When we adopted her we knew she had cerebral palsy and microcephaly. She is physically and intellectually disabled and those are the easiest things we deal with. One year ago she was diagnosed with Reactive Attachment Disorder, PDD-NOS, anxiety disorder, ADHD, and a mood disorder. This past summer she became a different child and 2 months ago she was diagnosed with Bipolar. I'm new to this but trying to soak in anything I can. We are still playing the medication dance and we just added Trileptal at our last appointment. I'm very excited to learn from your experiences!

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    1. Welcome Erin, I’m glad you found my blog, I hope it is helpful for you, if anything so that you can know that you are not alone. I’m sorry to hear about your daughter, sending you a ((big hug)). I look forward to hearing from you again, please feel free to email me if you prefer to chat off the blog, see my email address in the side bar. Trileptal helped a lot with my son’s anxieties. I hope you see improvement soon!

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  5. Thank you so much for sharing your story! So many times we feel so alone and isolated. My son is 8 and was diagnosed with autism at 2 1/2 yrs old then now at 8 they changed it to PDD-NOS and ADHD plus they are trying to figure out what else. He has anxiety and mood and rage issue. He has also has sensory issues. We are playing with medication dance now. We have to constantly keep changing. We find one that works then he looses too much weight and they take him off it. Our 6 yr old daughter was just diagnosed with ADHD and possibly Sensory Processing Disorder. We have had a hard time with psychiatrists listening to us and working with their therapists. Thank you again for sharing your story and reminding me that we aren't alone.

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    1. You're welcome, so glad you found this blog, I hope it continues to help you. I also hope you find a med that worlds for the long run, I feel for you, the medication dance is the worst!

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  6. Mama Bear, I am so glad you are out there for all of us! Tracking behaviors and maintaining that tracking system can be such a challenge, both in the rough times and in the easier times (albeit for different reasons), but you are so right about it being a powerful tool. It helps up track the effectiveness or not of various medications when we are in that medication dance (btw, I love that phrase Michelle, thank you), interventions, food, sleep, and moods. I have to admit, I have a difficult timekeeping up with it and frequently wish I'd kept them more consistently. It is all a learning process I think.

    Michelle, I understand about the difficulties regarding psychiatrists and even therapists. I think it is extraordinarily difficult to effectively convey what our experiences have been and what we are feeling about them, in the limited time we have with the professionals involved, without there being some measure of conflict involved. Each professional is interpreting our story through his or her own lens. Unfortunately, that frequently also means bias and we may have to balance educating them in regards to our own experience with the help we are so desperately seeking. We indeed have the toughest job you'll ever love. <3

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  7. MamaBear, what is the best way you've found to track the moods? I've lapsed in my charting since the spring, and I'm regretting it as my daughter begins to show increasing signs of instability. We've lost our regular pdoc, and we have new one who doesn't think she has mood disorder/BP. I want to start mood charting again, but I think I was trying to chart too much before. In your experience, what is necessary to chart? What method is most effective for you as a busy mom?

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    1. That's a great question. I personally just make note into a chart when I see a symptom or we experience a rage. Here is what my chart has:

      Date:
      Time:
      Event: (like homework, or party, or bedtime)
      Child’s actions: (like sadness, or hit his brother, or rage)
      Parent’s action: (like timeout, separate from brother)

      This may not be easy or quick. I just have a chart preprinted so after something happens I make note of it. I also note any med changes or side effects in the same chart. Not sure if this is the easiest, but it helps give me good info for when I need it later. It also shows if there are common triggers, common times of day, etc. or just overall mood problems. Hope this helps!

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    2. That does help! Is your chart something like a blank calendar? We had a dr who had us using a blank calendar for a while, but there wasn't much room on it. It was convenient, though. I was trying to write out entire sentences describing what happened, and it was just too much. It is helpful to see the main things that are important to record for future reference. Thank you!

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    3. I made my own chart so I could make room for all the words. I print out copies when I need it.

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