medication

It took us a long time to find a good brew of medication for Calvin. Over the last year or so we have played with different meds and dosages until now we feel like we're pretty stable on what we have. We haven't made any changes for several months.

Here's where we're at with meds.

- trileptal 750mg twice daily
- tenex 2mg at bedtime
- fluoxetine (Prozac) 15 mg  in the morning
- risperidone 1.5mg at bedtime
- vyvanse 40mg in the morning

In the morning he takes 4 and 2 1/2 pills and at night 5 and 2 1/2 pills.  It is 7 different prescriptions and it costs $100/month. Most are 10 each but one is a name brand without a generic substitute so it is $40.


We've been on Trileptal since Calvin's first seizure. The dose has increased a couple of times with his growth but he hasn't had any seizures so we are pretty steady at his current dose and won't make any changes unless he has another seizure in which case we'd increase the does a bit.
Side effects:   None that we see, but remember epilepsy is over activity of the brain, so the epilepsy meds SLOW down the brain.  I have a friend whose child was recently diagnosed with epilepsy and she refuses to put him on medication  because the epilepsy medication is "poison". While I completely disagree with her decision, it is true that the epilepsy drugs are not without harmful effects. The epilepsy itself is far more damaging though so we are EXTREMELY blessed that Calvin has not had more seizures, especially considering his definitive brain abnormality on the MRI.

We started tenex several years ago to help with sleep. Before this time Calvin hadn't slept through the night EVER. It was crazy. My wonderful developmental and behavioral pediatrician started him on this. It was life changing for me to get enough rest.  We could probably come off of this medicine with the start of risperidone which in and of itself would probably make him sleep but I haven't dared to try it now that we're in a kind of good place.
Side effects: tenex is actually a blood pressure medication, a vasodialater (relieving high blood pressure). So the main concern with this medicine is that we cannot start or stop it without tapering the medicine or Calvin is in danger of rebound hypertension. Not a huge deal but something to be aware of.

Fluoxetine was the first medication we tried after addressing sleep and epilepsy and started with a new psychiatrist just over a year ago. It is a mild medicine with few side effects and very safe. That is why we tried it first. It would be perfectly fine to be on this medicine for a life time (whereas some of the later medicines have more serious side effects).  We tried an entry dose and bumped up the dose a couple of times perhaps seeing minor changes in mood but nothing significant and also this did nothing to help the raging tantrums we were seeing. 

Risperadone is the drug we were dreading. A couple of years earlier with the behavioral pediatrician she had suggested this medicine but Dave was adamantly against it. So we circled around the issue and ended up having epilepsy start shortly after that and got side tracked with those tests and drugs, hoping that it would "fix" Calvin once the epilepsy was resolved.  Well, obviously that didn't happen so we knew we'd eventually come to this.  Risperadol is a potent antipsychotic medication used for all kinds of psychiatric disorders including bipolar and schizophrenia and given often to autistic kids with behavioral problems.
Side effects: weight gain, diabetes, excessive appetite, excessive sleep and some other more serious ones that are rare but permanent if they occur.


Many years ago we took Calvin to a psychiatrist who was not up to snuff and we tried a few medications, all of which failed for one or more reasons. One of them was a stimulant for ADHD which Calvin clearly has. The stimulant trial was disastrous so we had been hesitant to try something else in the same category. However, that left Calvin as an untreated ADHD individual so it was time to try one more time with the stimulant class.

This time we started on baby dose (an a different mediaction) just in case there was an an adverse reaction. I was opening up tablets and hiding little bits of medicine in drinks each day as we tittered the dose of Vyvanse.  After a couple of weeks we could tell there was no adverse reaction so we went ahead and tried a therapeutic dose of vyvanse. There was an immediate positive effect at home and at school. Calvin was asking for harder work and working longer without breaks at school. I also found him a little easier to live with at home. We were very pleased.

This seemed like a pretty good combination of meds and took us 6 or 8 months to come to these dosages and medicines.

to be continued....one more change in meds months later