Skip to main content

Counting Sheep

Today was the sleep consultation for Ben. I asked Ryan to go because he had information to add, but really I did not want to seem like a raving lunatic when I described Ben's sleep situation.

I had nothing to worry about with this doctor -  he made no assumptions, asked many questions and walked us through options for Ben. The doctor admitted that Ben's sleep pattern was unusual and offered many explanations and possibilities. He spent 45 minutes with us and probably would have spent more if the kids (and me) had not gotten antsy.

These are a few of the things I learned:

1. Sleeping pills have not been tested on children. It just has not been done. And they definitely have not been tested with children with special needs. I see a future in this area because so many parents deal with their child's insomnia on a regular basis and do not know what to do.

2. It is possible that when Ben was weaned off a seizure medicine called Clonazepam in May, we inadvertently, took him off the sleep aid he needed.  Although Ben was using the medication to curtail break through seizures, Clonazepam is also a sleep aid and it may have been helping Ben get to sleep at night.

3. The doctor offered to do a sleep study with Ben, and he explained in detail what the procedure entails. Let's just say it involves a lot of electrodes on his face, near his mouth, legs and then 20 more on his head. Then an oxygen line is needed in his nose. I kept myself from laughing at the thought of Ben being contained with all those things attached to him. It would be more a study in the adult's reflexes than a study of Ben's sleep.

4. Melatonin, in a small dose, given early in the day, everyday, can be used to help set a sleep rhythm.

We concluded the visit with the decision to give Ben the smallest dosage of Melatonin at 4pm, and then start him on his old dosage of Clonazepam. We will keep in touch with this doctor as well as Ben's regular neurologist. We may have to do a sleep study in the future, but we are going to see how this works first. I am glad to have a plan. I am even happier to find a doctor who seemed truly understanding of the situation and willing to try different methods to come up with a solution.

I started this routine today and as I write this at 8pm, Ben is in his bed, asleep.


Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

Popular posts from this blog

Impromptu Pet Therapy

  Ben met Doodle today. One of the staff at his day program brought him in. Ben loves dogs and these photos made my day. 

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru

Catching up with Ben

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me here .