Thursday, October 20, 2011

113 Days

I’m thrilled to report that our son has been on Lithium for 113 days and is still doing fantastic. We haven’t had a second rage after the original that occurred the first week of school back in September. So that’s 113 days with only 1 rage, I never imagined this was possible. Though there’s been a few breakthrough symptoms of sadness, it’s been minimal and easy to manage.

As for side effects, he continues to be doing great. Every once in a while he may feel a little off, but he immediately drinks water and it seems to make him feel better. So now both us and his teacher remind him to drink water throughout the day so that his Lithium blood levels stay consistent.

So what are we seeing?

A normal happy boy. He’s engaged, having fun with friends and exploring his creativity. This week he built a water station in his room. It’s a multi-level system that filters chilled drinking water and a hand washing station. Along with his work, he’s inventing new card games and sketching engineer type drawings of future builds. In addition, he’s loving his after school activity where he’s using his computer skills in a new exciting way and performing well in class.

Just yesterday, I reminded him of our upcoming doctor appointments where we continue to evaluate our son’s kidney condition (birth defect) and his ability to remain on Lithium. He looked at me in a very serious tone and said, “There’s NO way I’m stopping my Lithium, EVER! You’re going to have to fight me to make me stop!”

As you can tell from my son’s statement, he too is well aware of the impact Lithium is having on his life.


14 comments:

  1. Well no doubt he wants to stay on Lithium...it has brought him some peace of mind and given him back the ability to enjoy being around others. I have been there where you are always on the verge of a meltdown and it is no way to live.

    I am so proud to hear you little man stand up for his needs like that....I pray he has good kidney functioning for at least the next 20 years. (a lifetime would be best)

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  2. I love that your guy realizes how much better his life is! That is huge!! SO happy for your entire family!

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  3. In the Pink- You bring up a good point, it is incredible that he can stand up for what he needs, I’m so thankful that he is so insightful and able to share this with us.

    Jewell- Thanks! We are very happy right now : )

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  4. Such awesome, awesome news. ! Take that, anti-meds ranters!

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  5. bugs mom ,it is not about medication ,it is about medicating you kids in a very early age .

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  6. I am incredibly happy for all of you. This gives me hope.
    Cathy

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  7. Actually, this makes me think of a question. How do you know what is normal sadness and what is more than that? Is he irritable like any other kid and you have to not second guess his every emotion? How do you deal with this new normal?
    Cathy

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  8. Anonymous, I am well aware it's about medicating kids at a young age. I had to make the very difficult decision to medicate my own young daughter after trying other things, like psychotherapy twice a week for eight months, getting occupational therapy, trying diet changes, etc. DID NOT WORK. She was suicidal, struggling in school and had no friends. Medication changed her life. No, it isn't a perfect solution or the right choice for everyone. But for some of us, it's a lifeline.

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  9. Cathy-Good question. My son does show normal sadness and other emotions, but the sadness that is our concern is when he starts to cry and says that he doesn't know why he is sad, it's like his brain is sending the wrong message to act sad when in fact, he isn't sad.

    In the past we would see this type of sadness come on suddenly, he would be playing, then all of the sudden be overcome with deep sadness and would start to cry. At times this emotional episode would cycle with a mix of happiness. So he would first approach me saying that he was feeling strange or not feeling so good, then he would start to cry, a few seconds later he would switch to a strange smile, even though his eyes revealed a panic look, then a few seconds later he would switch back to crying. This would happen multiple times until he would become really upset, begging for help and start to slam his head into the ground, saying "Help me! My moods keep changing!!"

    Other times, he looked more depressed, separating himself from other people, not participating in what should be fun activities and having feelings of "worthlessness" as he would describe. Sometimes he would tell us he wants to die, that he was God's mistake or to just kill him.

    With the few breakthrough symptoms we've seen he has mentioned not feeling well, then he would cry just a little bit. We would hug him and remind him that his brain was just making mistakes and he is able to calm down quickly and move on. This rarely happen now.

    Does that help Cathy? Let me know if you have more questions.

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  10. Yeah! I'm so happy for ya'll! I'll keep praying for continued well-being!

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  11. That is so amazing. I don't think we've ever gone that long without a rage or meltdown. I am very happy for you and your family!

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  12. Yea....how wonderful for you and your entire family. GIves me hope....my husband too is on lithium and it has been a life saver....literally. Apparently it is a wonderful drug but very few can tolerate so yea that he is not only tolerating but thriving...so happy for you!!

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  13. Hi...

    great blog, and i have a hope for you that every thing is will be fine by the grace of GOD.
    Thanks for sharing this post.

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  14. who believes this bullshit? shame on you...

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