Last Friday, my family along with another Iowa family had the great opportunity to meet with US Senator Charles Grassley. The Senator was gracious and allowed us twenty minutes to discuss with him the obstacles our children have faced in regards to their medical history, lack of seizure control before CBD and to discuss the Compassionate Access, Research Expansion, and Respect States Act of 2015, also known as the CARERS Act.
Many people in Iowa don't quite understand the gravity of the matter when it comes to US Senator Grassley's involvement in medical cannabis. To our family, not only is Senator Grassley an Iowan, he also sits as Chairman of the Committee on the Judiciary and holds the key to families like mine gaining legality at the Federal Level. Without Senator Grassley allowing the CARERS Act to a vote in the Senate, families like ours will continue to fear being prosecuted at the Federal Level regardless of our state's laws.
Senator Grassley was kind enough to get down to the details on the CARERS Act right away. He shared many of his concerns with this bill including the worry that by allowing each state the right to create their own marijuana laws, that the United States would inevitably end up with 50 different marijuana laws. The Senator feels that it is important for marijuana laws to have uniformity regardless of the fact that 23 states already have legalized some form of marijuana. Senator Grassley also shared his concern that smoking marijuana is not supported by medical research. However, the type of medicine we use for our children comes in an oil form and is taken sublingually. The Senator also discussed that he did not care for the banking section of the CARERS Act at all. When I asked if that part of the bill could be discussed and changed if it were allowed to go to vote in the Senate, he said that it could. So as a parent, I am having a hard time fathoming why the CARERS Act is not being allowed to be sent to the Senate for a vote when the items that the Committee on the Judiciary find concerning would actually be up for discussion at that point.
As we chatted, our families talked to Senator Grassley about the side effects our children have faced due to pharmaceutical drugs. Abram's quality of life seriously diminished after he was prescribed Clonazepam, a benzodiazepine. I shared with the Senator that according to the FDA, there is no clinical trial experience with Clonazepam in patients under 18, that 30% of the trial patients had nervous system damage resulting in Ataxia, and that the adverse side effects on mental development could not become apparent until many years later.
At that point, I presented the Senator with a little informational brochure. The imagery shows the regression of my son on too much benzodiazepine and the progression he made with the addition of the CBD. You can see in Abram's eyes that his life was improving. While looking at this image the Senator's eyes widened and he said: "You really CAN see a difference, can't you?"
In addition to the FDA's trials on the particular drugs that reeked havoc on Abram's health, I also brought along the patent held by the United States Department of Health and Human Services that proves that Cannabinoids are safe and non-toxic up to 700mg. Abram only needs a small .10mg dose twice daily to have 100% freedom from physical seizures. I asked Senator Grassley why marijuana was still on the list of Schedule I Drugs when their Patent 6630507 proves marijuana in fact does have medicinal value but I did not get an answer.
Senator Grassley just reiterated that there is a lot of movement towards medical marijuana and that research on CBD is not on federal barriers. He reminded us that he and Senator Feinstein wrote letters to the Department of Justice and the Department of Health and Human Services asking them to classify CBD separately from the whole marijuana plant. He also reminded us that the federal government also removed the Public Health Review process that marijuana researchers had to undergo, a move that has allowed marijuana to be studied under the same amount of restrictions as other Schedule I drugs. To give credit where credit is due, Senator Grassley has taken a few steps in the right direction but we need more action from him and our federal government and passing the CARERS Act to the Senate for a vote would be a great step.
I tried to explain that CBD has been great for us and although Abram is seizure-free right now, the reality is that with our son's rare UBE2A gene mutation, the need for stronger medicine will most likely be a reality. (People often mistake Abram not having seizures right now as Abram being "cured" and that he'll never have a seizure again. This thought is foolish and I must clarify that regardless of AEDs and CBD, our son's brain is permanently injured, he has a neuronal migration disorder, already has atrophy in his hippocampus and his brain still fires irregularly all the time during the day and during the night. CBD has managed to keep those electrical shocks from manifesting into physical seizures but make no mistake - free of physical seizures does not mean free of abnormal brain activity.)
I tried to explain to the Senator that Abram is doing well right now but as he grows the need for a stronger CBD/THC ratio may become a reality sooner than later and that if/when that need arises I will have to break both state and federal laws to do just that if laws stay the way that they are. I intend to fight for Abram's right to that medicine now in hopes that when he needs it; I won't have to continue to worry about being a Felon by doing so.
While CBD doesn't help everyone, it does have the power to save lives. CBD has changed my son's life and it has changed the lives of many children that I know and love. I tried showing Senator Grassley as an example that if CBD helped just 10% of the 50,000 Americans that die each year due to seizures, that he himself would be responsible for saving at least 5,000 epileptic lives each year. Senator Grassley seemed a little exasperated at that number and asked why they would continue to push for these laws when "only" 5,000 lives would be saved. That statement took me off guard for several reasons because sitting right before him were two families and two boys whose lives had been changed immensely by CBD. Our sons' lives would be counted amongst those 5,000 lives. Yet, I couldn't help but to wonder what number of lives the Senator would deem worth saving. I would hope that ONE LIFE would be worth fighting for. While I bit my tongue, the other family spoke up and reminded him that that number was only meant as a representation of the epileptic lives he could save each year and that it didn't even include the impact he could have on the other people who suffer from different debilitating diseases and disorders.
Luckily, his exasperation at theoretically "only" saving 5,000 epileptic lives annually made a good point as to why we need broader medical cannabis laws. CBD has changed my life, my son's life and the lives of the family who sat along side us in the meeting with Senator Grassley. Our children are proof of the success that children with seizure disorders can have on CBD. Even the Senator himself could see how CBD has changed the life of my son just by looking at the photos I had given him. Our children are a testament to how well CBD can work.
However, CBD doesn't work for everyone and I refuse to fight for just part of a plant when my friend's children are still suffering. I also refuse to stop at CBD only because I myself may find that Abram needs something more as he grows and as his brain develops. Abram's gene mutation is rare and the only other family worldwide known to have this specific gene mutation lost a child at 11 to a seizure. I want to ensure that my son has legal access to whatever he may need - whenever he may need it.
Alas, our time quickly ran out and after taking our photos with the Senator we went our separate ways. Many thanks to Senator Grassley for taking the time to meet with our families to discuss how CBD has changed our lives and to try to understand how important broader medical cannabis bills are to families in situations similar to ours.
Cannabis is medicine. The government has already proven it. There are families being torn apart and lives being uprooted so people in situations similar to mine can give their child a chance at life. Please, take the time to write to your Senators, your Representatives and your Congressmen. Change needs to happen now and we need your help to stand up for what is right and speak for the little ones who don't have a voice. We are not criminals. We are parents just trying to do what is best for our loved ones, same as you.
Below is more of the "brochure" I made about Abram. Enjoy.
Today I bawled in front our Physical Therapist after she said "I have been working with Abram since June and I have rarely heard happy sounds come out of his mouth!".
Please let me clarify that I wasn't crying about what she said but the fact that she gets it! It was important for me to hear that someone else can see that something isn't right. It's not that I needed to have my thoughts justified but it felt good to hear that come out of someone's mouth, especially when that someone spends more time with our son than the majority of our family!
It was important for someone to be honest with me about how they see things. In fact, if it weren't for a dear friend of mine telling me that what my son was doing was *not* normal at 9 months, I am convinced that I would have lost my damn mind. (Thank you, Lacy. I will always be grateful for that conversation. That meant more than you will ever know!)
I feel that honesty is an important part of this life and that sugar coating things doesn't help much other than make the sting of disappointment burn that much stronger. So, while I was trying to happily tell our son's Physical Therapist about how wonderful our wedding was and how excited I was to go see a Neurosurgeon and new Neurologist on Wednesday; I ended up in tears.
As we were discussing what needs to be brought to the new Doctor's attention and asking her opinion on what items of importance should be noted - she also informed me that she believes that he is in some sort of pain/discomfort all of the time from his brain lesion. You wouldn't think that someone would be happy to hear that but I was. Not happy to hear that my son is hurting...... but happy that someone acknowledges and confirms it. The fact that this wonderful woman who came into our life (who has nothing but the best intentions for our son) and whom has been working with Special Needs children for decades tells me that something isn't right, was exactly what I needed to hear. What's even better is the fact that she is going to write up a little something for us to take to the Neurologist as she has been working with and observing his behavior for months and knows him better than most.
Please know that there is a big difference between being honest and being hurtful. Having someone tell you that your child is hurting and that his behaviors are not normal is honest and a much needed discussion. Having people say that your child's teeth grinding, whining, crying, etc is annoying is hurtful just as is having people comment on how or what your son eats and drinks from.
I realize that most of the comments are coming from a place of love and are not meant to intentionally hurt. I am not writing this to point fingers or make anyone feel bad. I just want people to understand how things are. Informing us that our son is fussy, clingy and a mama's boy is not helpful and it really hurts our feelings.
I love that my son loves us so much and wants to be around us because some day he won't want to be. At night when he has woken me up for the fifth time and I have gone weeks without more than a few hours straight of sleep.... I remind myself to keep calm and I stare at his little face and realize that just in a matter of years he will no longer want to be held or rocked and that right now he needs me and that is okay. That doesn't mean that I don't have days where I need to walk away and scream into a pillow because it is too much because I do have those days but it does mean that when the people we love look at him negatively because of his Special Needs it hurts.
Yes, he is fussy. He has always been fussy. He might always be fussy. However, right now he is a BABY and he can't tell us what hurts. Please remember that he has a Cystic Lesion in his brain that is symptomatic.... it is a very real thing that only 1.5% of the population has to deal with and it is incredibly rare for a Pineal Cyst to be as large as our son's cyst is. It is so uncommon that every single specialist we have seen has had both a differing opinion than the specialist before them.
He isn't walking because he has Hypotonia. He literally just started crawling and wasn't able to hold his own bottle until he was 9 months old because his muscle tone was so low. It's not because he is lazy or because I haven't tried. He has foot braces and Physical Therapy six times a month for a reason and it is helping immensely. He has come so far in just four months time with the help of Early Access.
He grinds his teeth because he has sensory issues and he is getting some sort of feedback from it. What it is we do not know but making rude comments about it isn't going to get him to stop. Yes, it makes my skin crawl too but there is nothing that I can do about it. He also likes to scratch things, has no fear, gags on rubber, won't touch/eat things with particular textures and he absolutely will not eat or drink anything cold and acts like it is torturous. Guess what? I can't do anything about that either other than help him try to get over those things little by little. I don't know why he is that way... he just is. Hearing people say negative things about him because he does those things hurts my heart deeply.
I guess I just needed to put this into the world:
Please remember to think before you speak. What you say to parents about their children can be hurtful and taken the wrong way with even the best intentions. Try to put yourself the other person's shoes before making commentary on someone else's child's behaviors, especially so when that child has Special Needs.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
MOST POPULAR BlOG ENTRY