This is not my kid. I know, because before he "had" to start taking anticonvulsant pharmaceuticals he never acted like a lunatic. Of course he cried and fussed plenty, certainly more than most babies, but if memory serves he did not exhibit the kind of agitation you'll see in the video below, at least not until he took his first antiepileptic drug, Trileptal, when he was just two years old, which made him go absolutely berserk.
Since then, we've seen this same behavior while taking Keppra, Clobazam and Banzel. We've seen the opposite reaction—zombie kid—when he took Depakote, Lamictal, Clonazepam and Zonegran. If I were a believer, I'd be praying to God that this intermittent mania is reversible. I so desperately want my kid back.
If we're lucky, it won't be more than a few months until Calvin is completely off of his benzodiazepine, clobazam, aka Onfi. He's been taking it for four-and-a-half years and though at first it did a decent job of quelling his seizures, he quickly habituated to it and the seizures returned. Each time they returned we were encouraged to increase his dose and, little by little, it far surpassed what is considered a recommended therapeutic dose, especially for a child.
Calvin has suffered a host of side effects from taking clobazam, most notably dizziness, ataxia (uncoordinated movement and gait disturbances), insomnia, psychomotor hyperactivity, agitation and excessive drooling. I know it because now, at less than half of his highest dose, Calvin shows few signs of these except in the days following a decrease in dose when withdrawal symptoms appear. Unfortunately, these side effects are magnified during a withdrawal and can also include increased seizure activity and even hallucinations.
Thankfully, the two cannabis oils we've been giving Calvin—one high in THCA and one high in CBD—seem to ease the bad side effects of the drugs and their withdrawal while keeping the seizures manageable. With any luck, the cannabis oils will one day allow us to take Calvin off of his Keppra, too, and perhaps be seizure free. That's the plan, anyway. I think it's a good one. In fact, it's the first one I've felt truly good about in all these long years.
If you cannot view the video below you can view it on You Tube here:
Since then, we've seen this same behavior while taking Keppra, Clobazam and Banzel. We've seen the opposite reaction—zombie kid—when he took Depakote, Lamictal, Clonazepam and Zonegran. If I were a believer, I'd be praying to God that this intermittent mania is reversible. I so desperately want my kid back.
If we're lucky, it won't be more than a few months until Calvin is completely off of his benzodiazepine, clobazam, aka Onfi. He's been taking it for four-and-a-half years and though at first it did a decent job of quelling his seizures, he quickly habituated to it and the seizures returned. Each time they returned we were encouraged to increase his dose and, little by little, it far surpassed what is considered a recommended therapeutic dose, especially for a child.
Calvin has suffered a host of side effects from taking clobazam, most notably dizziness, ataxia (uncoordinated movement and gait disturbances), insomnia, psychomotor hyperactivity, agitation and excessive drooling. I know it because now, at less than half of his highest dose, Calvin shows few signs of these except in the days following a decrease in dose when withdrawal symptoms appear. Unfortunately, these side effects are magnified during a withdrawal and can also include increased seizure activity and even hallucinations.
Thankfully, the two cannabis oils we've been giving Calvin—one high in THCA and one high in CBD—seem to ease the bad side effects of the drugs and their withdrawal while keeping the seizures manageable. With any luck, the cannabis oils will one day allow us to take Calvin off of his Keppra, too, and perhaps be seizure free. That's the plan, anyway. I think it's a good one. In fact, it's the first one I've felt truly good about in all these long years.
If you cannot view the video below you can view it on You Tube here:
I am here from Elizabeth's blog. I want to say OMG. I have never seen withdrawal in a child. It is horrible! I am so sorry for your son and for you. I am glad for the wean albeit slow and that the cannibis seems to be working. I am hoping good things for you and your family. Sweet Jo
ReplyDeleteYou know your blog entries make me cry, right? Sometimes I want to delete them before reading because Calvin will break my heart again and the story will just haunt me. But I never can turn away. I have faith that you will see the transformation you are working towards and in 40 years (when every state decriminalizes Marijuana) Calvin will present your posts as testimony before the criminal trials of all the big Pharaoh companies.
ReplyDeleteif only calvin could speak and reason. a nice image, nonetheless. thank you.
DeleteHaven't been in great touch but still/always following you and Calvin and sending love and caring.
ReplyDeleteJessica
May it all be so. I see Calvin emerging, even from here. He's in there. He knows.
ReplyDelete