Cartersville 7-year-old experiences benefits of medical cannabis oil

Posted

For Landon and Lori Sutton, the passage of Georgia’s medical marijuana bill last year served as a turning point in their youngest son’s life.Since administering cannabis oil to Tucker in fall 2015, the Cartersville couple has continued to witness a dramatic change in his overall well-being. With the treatment, the 7-year-old — who has severe cerebral palsy and intractable epilepsy — experiences fewer and less intensive seizures, from a maximum of 10 per day previously to now sometimes undergoing between zero and two.“To have the availability of a medication that has very little to zero side effects for Tucker, it’s a blessing on a monumental scale,” Landon Sutton said. “As a paramedic for Bartow County EMS and an active Bartow County Sheriff’s [Office] mandated reserve deputy, I have seen the devastation of what medication side effects can do to a person’s mental and physical well-being. We no longer have to worry about any overdosing concerns or Tucker being on a dozen different medications just to combat a single issue. I also look at it from a financial standpoint. Cannabis is far less expensive than the pharmaceutical alternatives.“When you’re dealing with a child that has the issues that Tucker has to battle on a daily basis, you, as a parent, would walk through fire to find a way to ease his deficits. The cannabis does this daily. Because Tucker is nonverbal and nonmobile, we — Lori and I — are unable to get the same reciprocating emotions that a normal child is able to give a parent. The cannabis allows us, as parents, to be able to interact with Tucker without Tucker being so sedated all the time. We get to try and supply as much of a normal daily routine to him as possible. Knowing that Tucker has to fight one less battle each day is something that I don’t have the words to express. I see him growing stronger each day. I see a light behind his beautiful blue eyes. And this gives Lori and I hope and strength to carry on.”Steadfast in their dedication to Tucker’s care, the Suttons’ plight started on their son’s first day of life. Stillborn at birth, Tucker experienced a severe brain injury due to a taxing labor and delivery in which his brain was devoid of oxygen for 19 minutes.“The medical term for the event that occurred is Hypoxic Ischemic Encephalopathy (HIE),” Lori Sutton said. “As a result of his brain injury, Tucker has severe cerebral palsy, intractable epilepsy, is solely tube fed, has a neurogenic airway causing noisy and labored breathing, and requires round-the-clock care. He is nonverbal and nonambulatory. Tucker communicates through eye contact, facial expressions and by squeezing our fingers with his left hand to indicate yes/no to our questions. Tucker has experienced numerous hospitalizations throughout his life. He first began suffering from seizures — diagnosed as infantile spasms — at 4 months old. His infantile spasms morphed into intractable epilepsy — very difficult to control seizure activity — as he grew older.“Tucker has been on numerous seizure medications throughout his life as well as the ketogenic diet for the past five years in an attempt to control his seizures. No significant improvement was ever noted on AEDs — antiepileptic drugs. The ketogenic diet, which is a precisely measured high fat, low protein/low carb diet, worked great for him for three years. Beginning in year four, Tucker began to suffer complications from a recurring GI bleed,” she said, adding that, due to this impending life-threatening situation, the diet was discontinued in January.Referring to her reaction to the passage of House Bill 1, also known as Haleigh’s Hope Act, as one of “incredible hope and relief,” Lori Sutton and her husband started treating Tucker with cannabis oil in September 2015.“Some parents have seen immediate effects, but it took Tucker a couple of weeks to show a response to it,” she said. “Tucker receives a dose of cannabis oil three times a day. His current [dose] is only [0.15 milliliters] each time. If you drop that into a medicine cup, it literally looks to be only a few drops. We administer Tucker’s oil under his tongue. It can also be given via his G tube, but it is such a small amount that we fear most of the oil would remain stuck inside the tube and not make it into his tummy. Absorption under the tongue is very quick, and it doesn’t even really require Tucker to swallow since it is such a small amount.“… We have seen a definite improvement in Tucker’s health, alertness and overall well-being since beginning the oil. Tucker’s seizures usually occur when he is tired or sleepy. His seizures last for up to five minutes followed by 15 to 20 minutes of uncontrollable tonic/clonic movement in all limbs. Tucker will desaturate — drop his oxygen levels — into the 60s during a seizure, he will break out in a profuse sweat, become tachycardic — elevated heart rate — and posture to his extreme right. … Since beginning the oil, we have seen a drastic decrease in both the number of seizures per day and the intensity. Tucker would have up to eight or 10 seizures per day prior to the oil. He has now had some seizure-free days as well as days with just one or two in a 24-hour period.”Signed into law by Gov. Nathan Deal on April 16, 2015, HB 1 enables patients who join the state registry and are diagnosed with one of eight health conditions to legally possess and use medical cannabis oil. The afflictions, which currently can be treated with the low-THC oil, are cancer, Amyotrophic Lateral Sclerosis (ALS), seizure disorder, mitochondrial disease, Parkinson’s, sickle cell, multiple sclerosis and Crohn’s disease. While the Suttons welcomed this legislation, they also feel more needs to be done and are currently supporting HB 722, which, if passed, will legalize the growth of medical cannabis in Georgia and expand the diagnoses covered.“The oil that we currently use can be classified as hemp oil, according to the requirements set forth in the Federal Farm Bill of 2014,” Lori Sutton said about Palmetto Harmony, which is shipped from South Carolina and is extracted from plants grown in Kentucky. “It contains [20 milligrams] of CBD [Cannabidiol] per [milliliter] and is 0.3 percent THC. Because it meets the requirements of the Federal Farm Bill, it can be shipped to us from out of state. This has shown definite benefit for Tucker, but what we feel would be most helpful to him and give us even better, if not complete control of his seizures, would be a higher THC concentration. The state allows us to have up to 5 percent THC but anything beyond 0.3 percent would not be compliant with the Federal Farm Bill and therefore could not be shipped. This is where the law passed last year becomes a problem. For anything beyond the percentage we currently have, we would break federal law crossing state lines with it. “Our hope for the future is that Georgia would allow cultivation, sales and distribution of all CBD and THC percentages that are to be used for medicinal purposes. Our hope is also that our state would allow anyone with a genuine need for this product to be allowed access to it.”With all of Bartow’s legislators voting for HB 1 in the House, state Rep. Paul Battles, R-Cartersville, was pleased to see the bill signed into law and now currently is supporting HB 722.“The availability of [cannabis oil] was an issue. Why we’re having another piece of legislation [is] because of the transport of the cannabis oil from another location to Georgia is in some cases illegal to pass through states,” Battles said. “So if a family were to go buy the product, then they bring it back to Georgia, then they could be stopped, arrested and prosecuted. So what [HB 722] is doing is trying to get under a controlled environment, a controlled growing of a sufficient amount of marijuana, which ultimately the oil would be extracted. ... So what we’re trying to do is get this locally in Georgia under a controlled growth and process that those parents and people do not have to leave Georgia and run the risk of being prosecuted if they’re caught in another state trying to transport it back.“... It’s a good bill. It does in fact need tweaking, and I would want to see it tweaked — a couple of changes to it. One is the increase in the level of THC in the oil. I would preferably like to see it be at what it was last year in HB 1. Then, of course, there’s a little tightening up on the control of that. ... We [do not] want any unintential consequences from this,” he said, referring to the potential abuse of medical marijuana. “... So I have a few issues that I want to see, as I said, tightened up and clarified a little better. But they are few. But there will be pushback on this. There’s a lot of support for this, but there’s a lot of opposition because of these issues that I just mentioned that need to be dealt with. But I do support it.”In the Senate, state Sen. Bruce Thompson, R-White, was excused from voting, while state Sen. Chuck Hufstetler, R-Rome, voted against HB 1 in 2015.“I voted against the bill last year because of serious concerns over the safety of the products being shipped from Colorado, China and other locations,” Hufstetler said. “The product has been tested by the American Chemical Society and has been shown to contain solvents, such as hexane, heavy metals, fungi and other contaminants in many cases. Children have ended up in emergency rooms from the contaminants in these products. This is not an FDA-approved product, and it is up to each individual to test the product they are receiving.“In addition, no medical studies have shown the need to have THC, the active psychotropic ingredient in marijuana, and most states have limited this to less than 1 percent. It is a different ingredient Cannabidiol, which may help the seizures in these several hundred children in Georgia. Georgia has approved a THC level of 5 percent, the highest level in the country. There is a pure drug made by GW Pharm — epidiolex — that is less than [0.3] percent THC that is available in Augusta at the medical college and is a much safer marijuana derivative drug, and I would support its use for these children.”He continued, “As far as the new bill, I will wait until the final version passes the House and comes over to the Senate before I make a final judgment. However, I do wonder why we have a new bill just months after the sponsor’s old bill went into effect. I would think we would wait and see how the current bill is working out first.”As the debate over the cultivation of medical marijuana in Georgia continues, the Suttons are passionate about telling their son’s story, hoping to enlighten others on the benefits of cannabis oil.“I realize that cannabis is not a cure-all for all of Tucker’s ailments and that cannabis will never bring him back to 100 percent normal, but what I do realize is that the medical benefits of cannabis far outweigh the negative,” Landon Sutton said. “It’s with the new education, dedication and tireless research of others that has made it possible for Tucker to be able to enjoy his life on his terms a lot better.“I just hope that people realize that there are a multitude of other children and adults that can benefit from cannabis. I believe that everyone has the God-given right to have a pursuit of happiness, and if this means to be able to live seizure-free or free from any other physical or neurological disability, which many have not asked for nor have any control over, then it is up to us as an individual and community to see that it’s available to them.”