Skip to main content

Drugs and Other Drugs

Our visit to the neurologist was eventful and helpful. For one thing, she answered the questions about Ben's mobility problems and sleepiness. They are both side effects of the drug Clobazam. In addition, the medication, Doxepin, we are using to help Ben sleep through the night may react with the Clobazam and make him tired during the day.

Plan of action - give Ben the Clobazam only at night and give one Doxepin pill, rather than two. If seizures do not occur, we may lower the Clobazam dosage. We also have room to increase Ben's Lamictol, another seizure medication Ben currently takes.

We have Plan B, C and D too and they all involve changing doses if Ben has seizures or side effects. I have to keep the doctor informed about his progress.

I did bring along my long list of dates with all the changes I saw in Ben since April and she was pleased with all the recording I did. (A star for me.)

For the first time, I noticed that the doctor keeps a long list of seizure medications and for each one we have tried on Ben, she writes down his reactions/side effects next to its name. We still have several left, luckily.

I asked if managing Ben's seizures would get easier as he gets older with stable weight and brain growth. She said that she did not know because she strongly believes Ben has some sort of syndrome. I had forgotten that at the March appointment she told me about GeneDx Epilepsy Panel - a genetic test for over 100 gene abnormalities. She thought it could help determine more information about Ben's seizures and the best medicines to help his specific disorder. This test was made available recently for a reasonable price for families - typically under $100 after insurance payments.

I was supposed to think about it back in March and get back to her, but it slipped my mind. At this visit, I told her to start the paperwork, we would give it a try. I am doubtful that they will find Ben's syndrome, but if they do, it would be nice to finally have a solid answer to the frequently asked question, "Do you mind if I ask what your son has?"

As an aside, the doctor's first words to us were - "Wow, Ben looks so alert!" For the entire appointment, Ben made noises and smiled at the doctor, trying to prove me wrong about his listlessness. Oh well, call me a liar!


Popular posts from this blog

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's 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

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies

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