Medicinal Marijuana: Part 1

It’s official, Madison is officially registered with the NJ Medicinal Marijuana Program! We got her card in the mail last night and could not be more excited to start this journey with her in the hopes that medicinal marijuana helps her find seizure freedom.

Because marijuana is not legal in New Jersey there’s quite a process in becoming a part of the Medical Marijuana Program or MMP. For one, you must suffer from an approved debilitating condition.

In NJ these include:

• Amyotrophic lateral sclerosis
• Anxiety
• Chronic pain related to musculoskeletal disorders
• Chronic pain of visceral origin
• Migraine
• Multiple sclerosis
• Opioid Use Disorder as an adjunct to Medication Assisted Therapy
• Terminal cancer
• Muscular dystrophy
• Inflammatory bowel disease, including Crohn’s disease
• Terminal illness, if the physician has determined a prognosis of less than 12 months of life
• Tourette’s Syndrome

The following conditions apply, if resistant to, or if the patient is intolerant to, conventional therapy:

• Seizure disorder, including epilepsy
• Intractable skeletal muscular spasticity
• Glaucoma
• Post-Traumatic Stress Disorder (PTSD)

The following conditions apply, if severe or chronic pain, severe nausea or vomiting, cachexia or wasting syndrome results from the condition or treatment thereof:

• Positive status for human immunodeficiency virus
• Acquired immune deficiency syndrome
• Cancer

Back in November we met with her neurologist to begin the process for registering her with the program. Because she is a minor, we had to first meet with a psychiatrist in order to get the okay that we were all on the same page and doing this for the right reasons, and I guess not just some crazy parents trying to get their hands on marijuana? I really don’t know. But regardless, in order to move forward the psych evaluation had to be done!

The actual appointment was pretty quick and easy. Getting the appointment took more time than I would have liked. Maddie’s neuro had given me a list of a few psychiatrists that have had these types of appointments in the past, but even so making the appointment was quite difficult. One had retired, one never called me back, and even when I did get through it seemed like the answering service people had no idea what I was talking about regarding the marijuana program and needing someone to meet with a child so young.

Finally I got somewhere through Children’s Specialized Hospital. Unfortunately, since Madison is not an existing psych patient, like most specialty areas it could be months to get an appointment. Luckily our neuro team stepped in to help us. I spoke to them, gave them the psychiatrist’s direct line, and we wound up getting an appointment about a week out from there! The psychiatrist approved our request and sent his formal report back to neurology.

Once Madison’s neurologist got the report, he had to submit an Attending Physician Statement on Madison’s behalf. With that, he was able to provide us with an ID number that we then used to apply online through the state. To apply for the program you need the reference number from an approved doctor, and then must submit some basics like a photo, ID, and proof of address. Because Madison is a minor and won’t be purchasing the marijuana herself, we had to submit these items for John and myself as caregivers.

Once we filed online, John and I needed to get fingerprinted for a background check. This is also done through a vendor the state utilizes. While we set up these appointments a representative with the Dept. of Health contacted me and confirmed that everything we submitted online was approved. After we completed the fingerprinting, it took about 3 days for the state to receive the reports and formally approve Madison for the card. I was notified through email that she was all set, paid the $100 fee for the card, and then all we had to do was wait for the physical card to be mailed out! For us, it took just under a week.

And now here we are, card in hand, ready to begin! When you apply for the card you need to select one “Alternative Treatment Center” or ATC, to shop with. You can change your center of choice at anytime, but can only work with the one you are registered with. Madison’s neurologist had already told me the 3 strains he is seeing the best success with throughout his patients, so we signed up for the dispensary that carries one of them. Lucky for us, one of the strains her doctor has seen success with is sold by a dispensary pretty close to our home, and is offered in the oil form at purchase. The other two strains are both sold at a dispensary about 2 hours south of us and are sold only in plant form, so would need to be cooked and modified for consumption for Madison. While we don’t mind making the drive or having to do the extra work in prep time, we figured we might as well start with the dispensary close by and go from there!

To begin, the dispensary requires new patients to make a first time consultation in order to learn more about the strains offered and purchase process. Unfortunately the earliest appointment they have available right now is not until March 14th! I’ve taken the slot but plan to call and explain Madison’s situation to see if there is any way to squeeze her in sooner. I also have a contact that knows some people at this particular dispensary that may be able to help us out. Regardless, we’ll definitely be starting in just a few weeks and are really looking forward to seeing how this might help Madison.

When it comes to medical marijuana and CBD in general, it’s a lot of trial and error which requires a lot of patience, something I definitely lack. There are so many strains to try, and ways to dose, it can take a lot of time and energy to really find that sweet spot. We have tried CBD before with little luck (read more on that here), but Madison’s neurologist believes that a little more THC might be beneficial, which is why we needed the medicinal card. We may also see things get worse, before they get better, which makes being patient about changing doses and/or stopping altogether also difficult.

Our hope is that we see some changes in both seizures and cognitive behaviors, and could then begin tapering her AEDs or anti epileptic drugs to lower doses, or in a perfect world, off altogether. I would love it for something more natural and with less side effects to work for my girl instead of her being on SO many strong and addicting medications each and every day for the rest of her life.

I will definitely update you guys on her journey as we progress! Her neurologist believes we will see some success, so here’s hoping we find that sweet spot and right strain for her early on. Questions about the process? Are you in the MMP and have tips for me? Let me know! This is very new to us and we would love any and all advice! If you’re living in NJ and are interested in the program for yourself you can find more information here: https://www.nj.gov/health/medicalmarijuana/

Xo,

Kelly