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Do you have a disabled child? A sickly child with cancer or Crohn’s? A child with autism or seizures? Something that cannabis is known to treat, then the advice most parents receive from the general community is “Go to Colorado, they have marijuana, and it will cure your kid.” Not many are willing to stay and help fight for change within those states for many reasons.

If they do stay for a bit to change the laws, the parent and the child become targets of the state and child protective services. For many of these kids, they do not have the time to wait for changes in their state. Then there is the reality of moving to another state. It is an emotional situation with many decisions and implications.

Moving is not easy for anyone, especially someone who is disabled. The cost can be $10,000 or more for a family, for a cross-country move. The services and medical supplies, the support system, and education services to be re-established. The cost of living in Colorado is not cheap, and housing can be scarce in the more populated areas, which are closest to the medical care,
educational, and social services. Jobs are available, but not for disabled or those who cannot pass a mandatory drug test, which includes the very medication needed to address the illness and symptoms they are trying to relieve. Cannabis is recreationally available for those over 21.

For the medical program, a minor (under 18) requires a recommendation of two physicians with qualifying conditions. Adults only require one physician to recommend cannabis as a treatment. In Colorado, the qualifying conditions are limited with only selected disorders: cancer, glaucoma, HIV/AIDS, cachexia, persistent muscle spasms, seizures, severe pain, severe nausea, and just signed into law, PTSD (CDPHE, n.d.; Wallace, 2017).

Children with autism, without another diagnosis or qualifying condition, may not be eligible under Colorado laws for cannabis use. This is the situation for many children who suffer from a disorder which cannabis is known to help but do not have a qualifying condition in the state; they are excluded from the medical marijuana program.

These parents are forced to administer secretly and are afforded no protection as a child who is allowed to possess a recommended physician approval and card from the state. As an adult, they would simply access the much-needed cannabis through the recreational market, even though their use is medical. This will incur higher taxes and higher costs with less access to all forms of medical products afforded the medical patient. Additionally, they have different limits on amounts to purchase and carry than a medical patient in the same state.

Establishing residency, medical care, finding a medical waiver (if eligible) and educational services in a safe neighborhood is stressful. New state residency comes with new rules, new taxes, and new realities. In Colorado, there is also the altitude, which can impact the existing health condition, especially those with breathing issues and oxygen needs.

Some of the new realities are, not everyone in Colorado is accepting of cannabis as a medication. If you call the doctor to establish care, they do not take cannabis patients or Medicaid patients. Although there is an established medical marijuana program in Colorado, the hospitals are not accepting of the use of cannabis to treat the qualifying conditions. If you are currently taking any narcotic or prescription medications, the potentially new doctor will not see you or refill those prescriptions. If you present to the emergency room or need an in-patient stay, there are policies and procedures which may oppose your chosen treatment plan.

In Colorado, schools are legally compelled by state law to allow a parent or caregiver to come onto a “Drug-Free School Zone” and administer cannabis medications to their child, in honor of Jack Splitt, son of Stacey Linn (Colorado Legislature, 2016). Not all schools are compliant with the law and still, refuse to allow a parent or caregiver on school grounds to administer the cannabis-based medication. Equal access to children needing cannabis-based medicine in public schools can still be a fight with unneeded stress and battles to follow the existing laws.

For some school-aged children, this is the only medication that helps control their symptoms and allow them to attend school. The school nurse or other staff cannot and will not give the cannabis-based medication: legally they cannot hold, store, or administer a cannabis-based medication during the school day. “Jack’s Law,” signed by Governor Hickenlooper in June 2016, guaranteed access to cannabis-based medication to limit the intrusion of educational minutes to those children who need cannabis medication to control their symptoms (CBS4, 2016). This means a parent must take time to come to school, check in, take the cannabis-based medication to the nurse office (or designated area), administer the medication and leave the campus with the cannabis.

But wait, this is Colorado? The Children’s Hospital has studies right? That is the illusion of cannabis in Colorado. It appears to be accepted, and for some it is, but not for all, especially those needing THC, not just CBD. Please understand, CBD is a medication and works well for many, especially children, but not everyone. As the children get older, experience puberty, and grow, their cannabis needs change, and they outgrow their dose or cannabinoid mixture. Many children with infantile spasms need CBN, THCa or THC, not CBD. The CBD will and has made the seizures and spasms worse when there are spasms involved, not just seizures. It is almost like the CBD is a neuro-irritant in some cases or disorders. The THC has allowed many children become free from the spasms, dystonia, and even the relentless seizures. CBD is not the only medicine in the cannabis plant able to help children; there are many other cannabinoids to utilize.

For many families, the reception at Denver Children’s Hospital in Aurora has been chilly and unsupportive concerning cannabis. During one emergency room visit, my son was labeled as an “illicit drug user” for being administered THC to address the severe dystonia and other juvenile parkinsonism symptoms being observed. The treatment plans, testing, and plan of care was limited with services not available for many months, sometimes over the 6-month wait, and no or limited assistance with traditional western medical options to support all the significant changes in abilities and ongoing changing medical needs. I experienced and hear similar stories with the neurological doctors in Colorado, but especially at Children’s Hospital.

While some individual physicians are cannabis friendly, the federal laws may not allow them to be. Those individual physicians that are against cannabis are quick to condemn and judge anyone choosing to use cannabis under complete protection of federal prohibition. The children who are soon to age out are at an unfair advantage with aging out into adult neurology. Although your child can remain until age 21 or after if agreed upon to be in the best interest of the patient, the neurology department at Children’s Hospital is quick to terminate services quickly or just be so slow in responding that a medical crisis is created.

Many parents have reported to me that the neurologist or epileptologist will look at the medical record and if they see cannabis listed that the treatment plan changes and all the issues are blamed on the cannabis. The plan of care becomes limited with few options and little support until the cannabis is stopped. From my personal experience, my son (Dravet’s) was throwing up non-stop, to the point that he was declared a failure to thrive and lost significant weight to 102 lbs at 5’5” tall. Cannabinoid Hyperemesis Syndrome was the reason, the diagnosis, and the suspected cause was “Marijuana Use.” If I would just stop the cannabis, he would do better. In defense of the doctor, research has not been allowed for over 80 years, eight decades, so they have a lot to learn. However, more effort needs to be made to understand cannabis use benefits and cannabis use side effects. Hyperemesis Syndrome is real but very rare. While on cannabis I made some dietary changes for my son.

Guess what happened when I stopped using the formula prescribed by the doctors and paid for by the Medicaid insurance? Yep, he stopped throwing up. I began making his formula by blending real foods and feeding him in the G-Tube. The cannabis use continued, the formula was discontinued, he was fed real food, and he stopped throwing up. The emesis had nothing to do with the cannabis; it was the pea-protein contained in the formula. Until the physician has permission to understand, research, and incorporate cannabis into treatment plans, they will not understand cannabis as a medication.

They will continue to take the easy path with blaming the cannabis for all medical issues and dismissing the patient, even if it is not true. But, you can see where the use of cannabis-based medications can cloud the picture and distort finding out the cause of pain, discomfort, disease, and symptom relief.

Do not be tricked by the media or others who claim cannabis is being studied at Colorado Children’s Hospital.

It is almost like it is a game of smoke and mirrors and staying just on this side of legal. There are currently three cannabis related studies, with some funding from the state of Colorado’s marijuana tax revenue to understand the use of cannabis in children (Denver Children’s Hospital, 2016). However, if you read carefully and understand the studies, they are observational, opinions, and some blood work to understand labs and levels when using cannabis.

If your child is already taking cannabis, they may not be eligible for the study. The recruiting for the study is also skewed to present misinformation as it excludes children already on cannabis and is a perfect portal for parents and caregivers who failed cannabis because they did not understand, were afraid of the treatment, or were lost in a world where the physician cannot tell them what to do or how to proceed, because legally they cannot do so. It is easier to be a pharma-kid than a canna-kid in the world of state rights versus the federal prohibition.

What is the status of cannabis use in hospitals in Colorado? That all depends on the hospital, their policies, and who is enforcing the rules. Denver Children’s Hospital has a policy that has to be signed by a parent/caregiver assuming all responsibility and liability for administering the cannabis product while in-patient. They are doing observational studies (Denver Children’s Hospital, 2016). Although they are friendlier with CBD products, they do not prohibit THC and other useful cannabinoids. As another example, in Colorado Springs, Memorial Hospital has a policy that will allow only epilepsy patients using CBD to use cannabis products as in patient. Each hospital is different and has their policies which can change with little to no notice.

Is Colorado a great place? Yes! As a parent, I can be paid to be my child’s caregiver, even under the age of 18. This allows me the ability to tend to his medical needs, ongoing care, and to go to the school to administer his cannabis-based medication when needed. We can grow our own medicine with home grows allowed. There is still judgments and stigmas. However, there are many supportive communities within the state to help learn about cannabis and thrive here.

There are adjustments to be made, but realities to know before making a move to Colorado. It is a great place with access to a safe medication that someday will be mainstream and accepted. Today, cannabis is available, and it is what each person makes of it for their own health and healing. Cannabis is a unique medication that has healed many, offered comfort to others, and created strange friends in the fight to educate others about its many uses and applications.

 

References

CBS4. (2016). ‘Jack’s Law’: Medical Marijuana In Schools Bill Signed By Governor. Retrieved from Denver Post:
CDPHE. (n.d.). Debilitating conditions for medical marijuana use. Retrieved from Colorado Department of Heath and Environment:
Colorado Legislature. (2016). House Bill 16-1373. Retrieved from Colorado House Bill:
Denver Children’s Hospital. (2016). Research About Medical Marijuana. Retrieved from Children’s Hospital of Colorado:
Wallace, A. (2017). After years of lobbying by veterans, Colorado adds PTSD as medical marijuana condition. Retrieved from The Cannabist [/perfectpullquote]

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