The Muzzle is Off – This Mom’s Truth - Parents 4 Pot

By, Jill Hitchman-Osborn

A little over a year ago, I begged the Department of Public Health in Massachusetts for cannabis

access from a program so poorly implemented that legal patients had no legal access. What I

couldn’t say that day was that my daughter, Haley was on CBD. She was enrolled in the Epidiolex

trial with a pharmaceutical company that was testing a version of CBD only cannabis. What I was

muzzled from saying was that Haley failed Epidiolex miserably.

 

I focused on the fact that we saw cognitive gains even without seizure control. Every time I publicly

discussed Haley’s experience, I received a letter advising me that we were to keep our results

private. But, we had no nondisclosure agreement. Other families publicly shared their successes.

GW Pharmaceuticals released their own data at the American Epilepsy Society conference showing

that 50% of study participants saw a reduction in seizures of 50% or more. It stands to reason then

that 50% did not. However, they chose to release their own data and allowed only supportive

propaganda.

Throughout the study, Haley’s seizures continued to escalate. She stalled cognitively. This was still

an improvement from her regression prior to CBD treatment. After a year, with no legal alternatives,

Haley was in a bad place. She was maxed out on the highest allowable dose of CBD. Her cognitive

regression had her resort to gestures and signs because her speech aphasia was so severe. She had

between thirty and fifty convulsive seizures daily. She had lost 10% of her body weight and was

listless and weak. We decided to drop the study.

After failing so many pharmaceuticals and the Vagal Nerve Stimulator not working yet, I thought I

had to accept that this is our life. I felt like a failure; the despair and hopelessness was

overwhelming. There was one last pharmaceutical to try. It is a n new one called Aptiom. It is

contraindicated in Haley’s type of epilepsy, but we had to try.

For so long I’ve been anxious and afraid to reveal our experience in the study. I was afraid that they

would discharge her because I was honest, and it didn’t work for her. Now that she has exited the

program, the muzzle is off. While I am crippled with guilt that this current seizure control is coming

from a pharmaceutical, I am grateful that she has this period at all.

What I want to say most is that Haley failed Epidiolex, but she has not failed cannabis. The success

with Aptiom has given us a luxury we never had before - the luxury of making decisions that aren’t

tinged with desperation and fear. We are still pursuing Haley’s medical marijuana card and looking

forward to trying additional cannabis products. Our next step will likely be THCA, which is raw,

cold extracted and still not psychoactive. While Haley is in a much better place than she has been in

years, we still aim for better. Cannabis is still hope for Haley.


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