My Daughter Needs Cannabis: One Family’s Story

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By James Damian Stewart

The photo above is me with my beautiful 23 year-old daughter, Kelly. She has suffered every day of her entire life, struggling under the pain of severe epilepsy, Cerebral Palsy, mental and physical retardation, etc, etc, etc. She now functions at the level of a 6-month-old baby. 

Kelly before starting on Anti-Epileptic Drugs (AEDs)

Kelly before starting on Anti-Epileptic Drugs (AEDs)

In 1997, Kelly was 6 years old. She had been born with one side of her brain “under-developed.” It eventually “caught up.” However, she was extremely developmentally delayed and regularly had screaming fits. But she was also a very happy, smiling, and loving child most of the time. She smiled a lot and was very affectionate.

We saw a talk-show about a similar child, and we took her to the Pfeiffer clinic, trying to figure out why she had screaming fits. They gave her large portions of vitamin supplements to attempt to correct a chemical imbalance. We don’t really know if that would have changed anything or not because shortly after she started taking the supplements she began to do the classic “sit-and-stare” thing typical of pediatric epilepsy patients, and get red blotchy spots on her face at the same time.

Honestly, looking back on it, we think she had already been occassionally doing this at almost unnoticeable levels.

When we brought up her symptoms to the clinic, the nurse told us that it sounded like she was having seizures and we should take her to a neurologist for an evaluation.

We did that and discovered that she was having absence seizures.

She was immediately prescribed Tegretol. She immediately began having convulsions. This was a new development.

The doctor immediately prescribed more Tegretol. She immediately had more convulsions.

More Tegretol. More convulsions. Until he said she was approaching toxic levels of Tegretol…So, we need to add Depakote on top of it.

More convulsions. More Depakote.

Etc, etc, etc…Through a laundry list of “anti-epileptic” drugs and through more than one neurologist.

Kelly during a 6 week hospital stay for aspiration pneumonia. She had to have a tracheotomy.

Kelly during a 6 week hospital stay for aspiration pneumonia. She had to have a tracheotomy.

She has been under the “care” of multiple medical “experts” who have been more than quick to prescribe drug after drug after drug and progressively increasing (toxic) doses of those drugs and combinations of those drugs that have done nothing but increase seizures and literally destroy every conceivable aspect of her life and our family’s life.

These dangerous pharmaceuticals each have extremely long lists of supposedly “rare” side effects that the very doctors who prescribe them are reluctant to even acknowledge.

Unfortunately, the doctors who prescribe these drugs are not very well versed on everything we assume that they know. I can’t blame them. They are overwhelmed and can’t keep up with every aspect of every drug they prescribe… I won’t mention the financial kickbacks they get from prescribing them (well, I guess I just did).

Regardless of their level of medical “expertise” no one knows for sure what is going to happen when you use these pharmaceuticals… And then when you start mixing them, it is truly impossible to predict what will happen. Unfortunately, for Kelly, the results have been disastrous.

When this all started, my wife and I were in our mid-twenties. We were not wise enough to realise what was going on. We thought “well, the doctors said she needs this. So, we need to give her this.” Oh my god, how I wish I had understood more about the medical system then. I was only 25 and thought the doctors knew what was actually going on with the brain and knew how to fix it. MY naivity is the reason my daughter is in the condition she is in today.

If I had understood what was going on, then I would have immediately put the brakes on the “Well, give her more of this drug” mentality. I guess I will be forced to take that to my grave.

By the time I figured it out it was too late.

After almost two decades of Kelly’s physical and mental deterioration, we stumbled upon medical marijuana and happened to be currently living in a state (New Jersey) that allows very limited usage of medical marijuana.

Our daughter is an obvious case of “compassionate use” to anyone who has observed her for three seconds. The “marijuana doctor” we took her to was speechless when she stepped into the room with her the first time. Unbelievably, it took over eight months to get her “medical marijuana card” to allow (get government permission) to give her medical marijuana. I feel extreme compassion for those who are terminally ill, with months to live, and have to go through this months long process. They might actually die before getting permission from the government.

The damaging results of AEDs and seizures.

The damaging results of AEDs and seizures.

Because Kelly was actually so disabled that she was unable to physically go to a facility and acquire the medical marijuana herself, my wife was required to obtain a “care-giver” card herself. This care-giver card required an additional and extreme registration process and cost…just because Kelly was actually so disabled to be incapable to go get it herself.

However, after much expense, we were finally able to comply with New Jersey’s laws and obtain medical marijuana for Kelly.

After her initial use of medical marijuana, Kelly went THREE days without a seizure!

For sideline observers that doesn’t seem like long. However, for Kelly, that was exceptional. She had gone through years of multiple and severe seizures almost every single day. I cannot begin to describe how horrible her seizures were on a regular basis. I’ll just say that if we went to the Emergency Room every time that most people would have gone… we would NEVER leave the hospital. There are many other parents of epileptic children who know what I am talking about.

And so, with medical marijuana, Kelly has shown a measurable decrease in seizure activity.

The strain of marijuana that we are able to legally obtain in New Jersey is not high in CBD (the Cannabinoid that reduces seizures and, oh by the way, doesn’t get you high). The strain does help though. We still need a strain that is higher in CBD… such as Harlequin or Charlotte’s Web. For now we are restricted by what New Jersey will allow.

We have also recently started Kelly on the Ketogenic Diet. Now, with the combination of medical marijuana and the ketogenic diet, Kelly went eleven whole days without an observable seizure. I say “observable” because, in the past, her brain has been in an almost constant state of unobservable seizures only measurable via EEG.

She had two seizures yesterday. However, they were nowhere near as powerful as her “norm.” I don’t know how to express this other than to say that this is a miracle for her.

She is alert and smiling…Smiling for the first time in years! We also noticed an increase in eye-contact and overall awareness of surroundings. It’s been years since Kelly was happy and functioning like this.

If you are a parent, you know the difference between your child being miserable and your child being happy. I don’t know about you, but I would give everything that I own – I would lay down my own life – for my child to live one single day as a “normal” child!

Kelly with her mother, Wendy Stewart, who quit her managerial job 11 years ago to provide 24/7 care for Kelly.

Kelly with her mother, Wendy Stewart, who quit her managerial job 11 years ago to provide 24/7 care for Kelly.

But we still have a long way to go. Until New Jersey allows us to get a wider variety of medical marijuana, including the CBD-rich strains we believe will help Kelly, we don’t know how much more this therapy could really help her.

Additionally, we are wide-open to federal raid and prosecution. It is not inconceivable that the DEA could smash through our front door and potentially kill every member of our family in the process. If we were lucky enough to survive that, we could still have our home, and every other material possession (including bank accounts) seized! What else can I say about that? To clarify, I know that is very unlikely to happen. However still possible.

Marijuana is not a “drug”. It is a plant…completely natural. Heroin, PCP, and Meth are drugs. Tylenol, aspirin, every AED (anti-epileptic drug), all pharmaceuticals, spice, etc, etc, etc. are drugs. Am I saying that all drugs are bad? Hell no. What I am saying is that they can be when used incorrectly. What I AM saying is that marijuana is NOT bad.

I am not advocating for the ability of minors to use (recreational) marijuana, just like I would not advocate for the ability of minors to use alcohol. They are minors. YOU are their parents. What I am telling you is that the government has no right (at least in a “free” country) to tell people what they can ingest… especially when they (the government) are interfering with compassionate medical use. I’ll leave it at that, without going into the fact that you should have the right to do whatever you want to, and taxing it at an extremely high rate is not the answer.

Kelly as a happy little girl, before seizure medications.

Kelly as a happy little girl, before seizure medications.

I ask you… yes… YOU…Free American…When are we, as a “free” people, going to finally reject the brain-washing and tyrannical control of natural products that we choose to use?

There is no, I repeat, NO such thing as a marijuana overdose.

How many people can you name who died from alcohol? I can name multiple “rock stars” and one personal teenage friend. For know-nothing politicians to say that you are only allowed to use poisons for “medication” and deny you the use of a natural plant is nothing short of criminal.

Ask the question… Don’t be a lemming…Why, why, WHY?

When you look at it logically… the only answer you are going to get is “because I said so!” and that is a fine answer when you are explaining to your three-year-old why they have to sit in a booster seat. However, is that how you think you should be treated as an adult in a “free” country?

Marijuana is not “evil.” If you don’t want to use it, then you don’t have to. Why would you want to stop someone else? Especially a child like Kelly.