BullersInKauai: May 2009

Saturday, May 23, 2009

Involuntary Hand Movements

While sharing a rare lunch opportunity with Aly yesterday, I was called by the health room at Ben's school. He had checked it in with involuntary movement in his extremities, predominantly his hands. I called his psychiatrist, who is also a pediatrician, and notified him of this new development. Touting Abilify as an ultra-safe drug, he felt that the tremors were unlikely to have been caused by the new drug at such a low dose entry level. So I was left to wonder...what the *bleep* is going on?? (pardon my expression) Uncomfortable with this new development, I checked Ben into the ER in Lihue and waited for the call. I was totally convinced this was a side effect of the new drug or at very least, an interaction with the already familiar Prozac. An hour into the wait, Ben was assigned to bed 31, a kid friendly room in the ER with a crash cart!! Nothing like comforting a sick child with a crash cart in the room! Anyways, long story short...the doc came in and examined him...called our psychiatrist in Oahu....and seemed somewhat determined to resolve this new tremor issue. Two brilliant minds came together with the diagnosis that the tremors were just a new symptom of anxiety and in NO WAY related to the new drug! What?? Are THEY on drugs?? How can this possibly be? I was NOT impressed!! Frustrated with their apparent lack of training, we left wondering about the state of our current healthcare system.

I drove the 20 minute drive home with a keen eye on Ben's hands which had previously been in a constant state of awkward, jerky movements. They were now decidedly silent. Still. No movement. What was going on?? Could they be right? Will I have to eat my silent words? Is this really just another symptom of anxiety? Who knows?

At this point, we've been advised to continue the new drug. I for one am keeping watch.

Wednesday, May 13, 2009

Pray for Ben

I am full of gratitude that I am able to come to you (once again) with this request. We need to amp up our prayer for Ben. As the middle school year comes to an end, we find his anxiety levels increasing as well his OCD. He is curling up his toes and walking inside his sweats, typing with his knuckles, removing the outer casing of a ball point pen and using only the thin refill to write. The other day we spent a fabulous time on the north shore exploring, snorkelling with sea turtles and sun bathing; Ben was so agitated he couldn't enjoy a minute. At one point, Ed convinced him to jump off the Hanalei pier (BIG accomplishment) into the ocean. Ben's anxiety and OCD wouldn't allow him to return to shore because other people had been swimming in that part of the ocean. He started swimming out INTO the ocean around the pier thinking he could swim across the ocean bay to where we pitched our beach camp. They would've never made it. Ed had to struggle in a physical and emotional fight with him to encourage him back to shore. Ed was very frightened throughout the whole ordeal as the battle almost nearly ended in both of them drowning. :` (

Because of this life threatening incident over the weekend, we have decided to supplement Ben's current medication with another med called Abilify. For those of you in the know, Abilify is a newer version of Risperdal with less side effects. We struggled with the decision to add this new med over many weeks, but after the ocean scenario...we feel we have no choice. Abilify should calm Ben and manage his anxiety and compulsions. However the common long term side effects are not pretty: increased blood sugar levels and possible drug induced diabetes, extreme weight gain (40 lbs. in 3 months), increased cholesterol (100 unit increase in a year), seizures and muscle spasms. Most are reversible when the drug is removed although the muscle twitching has been known to be permanent.

Please, please, please pray for minimal to no side effects, especially no drug induced diabetes or seizure disorder (and for a return to healthy mental state). Those of you who know us well, know Ed has diabetes and epilepsy so there is already a genetic factor at play here. For what's left of my sanity, we need some hard core praying!!! I am not happy to walk through this again but will, knowing God is the Lord of Ben's life and He holds us all in His hands.

For spring break, we went to Honolulu for one night. Ben couldn't sleep in the bed because he didn't know who had used it before him. He spent the night on the floor by the door on the tile floor/ carpet with no blankie. Ed drew the line at him sleeping in the suitcase (that was his preference).