Iowa Mom: Daughter’s Spina Bifida Deserves Marijuana Access

Jun 3, 2019

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This daughter was born with spina bifada and developed scoliosis after a tethered spinal cord release. Her mom wanted this story shared:

Hello, This letter is regarding the legislation for the approval of cannabis. Here are my thoughts on the subject. I know you most likely disagree, but I feel that I have information that needs to be shared with you. I have a daughter with Spina Bifida. She is 17 years old. When she was 12 years old, she had a tethered spinal cord release which caused her to lose her bladder function, and she also lost “feeling” in her left foot. And then 3 months later, she had a spinal fusion for scoliosis.
	This picture was taken the morning before she went into her spinal fusion surgery for Scoliosis. I believe she was in surgery for 14 hours that day. The picture below shows her x-rays before and after her spinal fusion surgery. As you can see, she had a lot of hardware placed into her body for the fusion. I have to be honest when I tell you that I regret allowing her to have the fusion surgery because my daughter suffered from CHRONIC PAIN until May 17, 2018 when she had a hip flexor lengthening surgery which ultimately answered our prayers and gave her the pain relief that we were desperate for. She SUFFERED for 4 years before we found relief for her. Doctors would not give her opiates for the pain. All they would give her was Tylenol and Gabapentin. She was taking very large doses of Tylenol which provided very little relief. You have NO IDEA how much of a struggle it was for her. She used a wheelchair in school, and pretty much daily had to go into the nurse’s office at school to lie down.

Shown left: pre-surgery Spina Bifada. On the right: post surgery, with painful hardware installed to correct spine curvatures. As a parent…. It is very difficult to see your child suffer and to worry about their mental health while they are suffering. My daughter was suicidal. We tried physical therapy, yin yoga, chiropractic care, various medications. NOTHING HELPED. Not even CBD. The reason the CBD did not work was because it tasted HORRIBLE and she just couldn’t stand the way it tasted. Even when I mixed it with Orange Juice or Apple Juice. My daughter does not have a permit to use the CBD but I didn’t care. I wanted to relieve her pain and it was worth a try so I gave it a shot. I simply did not care that it was illegal to use in Iowa. Because my heart was breaking for her and I just wanted to relieve her pain. A person would have to be blind and deaf to NOT NOTICE that other states were permitting the use of cannabis for pain relief. So, I did some research on the subject. And I created a tincture with cannabis and everclear using this recipe https://youtu.be/466bmv1fFzQ on youtube that I found from a father who was making the tincture for his child – with Autism. (They were from Canada where it is legal) So…. I made the tincture, and I tested the tincture on myself to see if I would experience “the high” that most people get from smoking cannabis. I discovered that I would need to take about 3 whole dropper fulls of the tincture to experience the “high”. So, then I tested the tincture on my then 16 year old daughter. We started with just a quarter of a dropper full of the tincture. Then we tried a half a dropper full and that is when I discovered the tincture mixed in a glass of orange juice gave my daughter pain relief. IT WAS A MIRACLE. She did not experience the “high” and she was pain free. This was such a small amount of tincture that it was hardly even perceptible in the drink. You could not really taste it at all. So, I have to tell you that THIS WORKED for my daughter’s pain. But I struggled with the fact that I had to illegally obtain the cannabis to make the tincture for her. It’s very difficult to obtain cannabis from a drug dealer… let alone trying to get a consistent “strain of cannabis” every time you make the tincture. You never know what “strain of cannabis” you are getting. That is why I strongly implore you to consider the legalization of cannabis. If Iowa families were allowed to grow their own supply of medicine there would be so many more people living pain free. Not to mention, this is a good way to ease the financial burdens of the people living in Iowa. Just imagine how much money every household will save from having the ability to grow a few plants of their own medicine for their own personal use. You MUST stop thinking that ALL PEOPLE who are using cannabis, are using it “TO GET HIGH”. Seriously. There is significant data available to back me up on this.
Yes, she had hip flexor lengthening surgery which FINALLY took her pain away. BUT IT TOOK 4 YEARS to get there. My daughter had another tethered spinal cord release 2 ½ years ago, but it did not help. We were devastated. In closing, I’d like to share that my daughter does not use the tincture anymore because she does not need it. But the option to use tincture should be available to the people of Iowa. And this medicine does not have to be a burden financially to the people of Iowa if they were legally allowed to grow a few plants per household.Sincerely,A Concerned Iowa Mother