July 14: Another Day

I’m so grateful for this community. Thank you for your messages (and calls!). As they say, tomorrow is another day — and today was a better one.

We met with John’s neurologist and after much discussion, have decided to try risperdal to see if it will decrease his manic night-time episodes and maybe even lessen the daytime stims. It feels like this awesome decision though, which is why I made Twins Dad come home in the middle of the day just to talk through my fears of anti-psychotics with the neurologist. We are assured the dosage is small and may or may not help, it’s all a shot in the dark. Not the vote of confidence I’m hoping for, but…

I am desperate. Desperate. And I know medication has helped many of you. Our neurologist assures us the dosage is tiny and it might actually do wonders. Please, please, please. Please sleep.

I worry that he’ll turn into a different boy. Yes, the stims are excessive and often prevent him from focusing and learning, but he’s so exuberant otherwise, so alive. Part of me fears that will be tamped down. I don’t want him to change, I just want him to sleep.

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  • It is so hard. The benefits of sleep are so important to all of you. WHat I tell myself is that if my guy was diabetic, I would give him insulin; if he was missing a crucial enzyme, I would supplement it – if he is missing what it tke to rest properly I have to be ready to give him that too. Good luck and I hope it works out!

  • Just wanted to mention that my son,( who has multiple disbilities and dev. delays ) was once treated with risperdal for a screaming behaviour he had developed. He would scream and then laugh for hours, until he literally had no voice left! I would never have believed a medication could stop a behaviour in it’s tracks, like it did. Within 3 days the screaming stopped completely and never returned. Unfortunately the riperdal caused increased seizure activity for him and he had to go off it. Luckily the behaviour was stopped in those few days so it didn’t matter.
    I do hope you’ll see good results as well.
    Linda

  • Here is my very recent experience with one of my 7 year old twins with similar sleeping problems–it was his violent outbursts that led up to risperdal, however….I was also agonized about the decision (I posted a blog about it).
    Our DAN recommended 0.5mg twice a day. We gave him 1 pill the first night, then the next day he was so, so tired–it scared the crap out of me, so we stopped at one pill a day. BUT for almost 4 days he slept through the night. For him, once the tiredness during the day faded, so did the sleeping. For two weeks, though, he was a wonder child–so pleasant and agreeable, it was awesome! Now, he is back to waking every night, seeking mom or dad, and his outbursts are back as well. We are going to try the twice a day and see how that goes—along with consulting our RDI therapist for behavior modification techniques—whew!!!! But, then–when do you stop? Do I keep increasing the dosage? ugh! Feel free to contact me if you want to talk about it—seems we are rowing the same boat….good luck!

  • Emma, you’re so right, thanks! Linda and Jenny, thank you for sharing your experiences with me too. I have heard a lot of good and a lot of not-so-good and it really seems that risperdal affects each person differently. We really hope it ends up being a positive change for John and in fact, after three days have seen some amazing (‘though small) things. Sleep is one of them! Jenny, it does seem we’re rowing the same boat. I really hope you’re able to find a solution to your son’s outbursts, maybe spreading his dose over two pills will help. Feel free to email me if you’d like kal.twins (at) gmail.com

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