Last Night, Abram and I were on Channel 13 News again to share my thoughts on the DEA deciding to not reschedule marijuana and why it is so important for the members of the Iowa House to do what is right and pass a comprehensive medical cannabis bill.
The text of the story from Channel 13 News is copied/pasted below:
"DALLAS CENTER, Iowa -- The Drug Enforcement Administration announced Thursday that it will keep marijuana illegal under federal law for any purpose. In reaching its conclusion, the DEA said a Health and Human Services evaluation shows marijuana has no "currently accepted medical use."
That's bad news for Erin Miller, whose four year-old son relies on cannabis oil to prevent seizures. "To say that it has no medical proof that it works, my son`s 14 month seizure free today, so that`s huge to me. He`s living proof that it works," said Miller. Doctors told Miller to use cannabis oil as medicine to treat her son Abram's seizure disorder, and it worked.
"I don`t understand why the DEA has any say in what classification marijuana should be in. To me, it seems like that`s a conflict of interest. Their job is to enforce drugs, so if they reschedule that, then there goes a huge chunk of their money," said Miller. The announcement by DEA that marijuana will remain a schedule 1 substance under the Controlled Substances Act, and thus illegal under federal law, means Miller will have to continue to act in defiance of the law to get medicine for her son.
"We just went to Colorado, and the thing is, that a lot of our lawmakers don’t understand too is, you know, they have recreational marijuana and they have medical cannabis there. I can` t walk into a medical dispensary there and get his oil. I also have to break (the) law in Colorado and ask somebody to help my son, so not only am I breaking the law, I have to ask somebody else to risk their freedom to give my son his medicine and then worry about bringing it through Nebraska," said Miller.
Miller says the decision by DEA just shows how important it is for lawmakers to take action. "Our lawmakers are literally encouraging us to break federal and multiple state laws to get our kids medicine," said Miller. State Senator Steven Sodders has been on the forefront of this issue in the legislature, and wants to continue to work to try to change the law on this subject in Iowa. "I actually have a couple of constituents in my area that are using the cannabis oil, so I`ve seen it work first hand," said Sodders. "I think that Iowa will probably take another look at the bill that we tried to pass the last couple of years, that got stopped in the House, but I think we`ll try it again in the Senate," said Sodders."
My opinion piece got published in the Des Moines Register today. I am beyond elated that it got such a huge piece of the Sunday paper. What an honor. You can read it on their website here or in the text below.
"Imagine having a child with a diagnosis so rare that genetic researchers in three states ask your family to participate in medical research because they are officially learning from your child. Imagine having a child with neurological storms that no one caught until permanent brain damage had already been done. Imagine having a child so sick that the doctors you trusted come to your child’s hospital bed and tell you that they don’t know how to help you and have to send you elsewhere for help. Imagine being pulled into a private room and being encouraged to try cannabidiol. Imagine being so desperate to help your child and worrying if doing what is best for your child will make you a “criminal.”
When you have a sick child, you find yourself in a battle to find the right team of specialists that can best manage their particularly rare set of circumstances. We never imagined we would have to fight for our child’s legal right to have his medicine. Especially when the recommendation came from his neurologist. Our situation in Iowa is hypocritical and cruel at best.
My zip code should not dictate what medicines my child can access, nor should it dictate which representatives respond to our needs. My family should not have to concern themselves with breaking federal law to get a medicine that Iowa law says we deserve. Yet, many of our legislators continue to block access to cannabis oil.
It is insulting to sit in a public hearing and listen to the testimony from Drug-Free Iowa, who worries more about the potential abuse of teenagers on a cannabis oil (which doesn’t even have enough THC in it to get a toddler "high"). Yet, my son is prescribed a benzodiazepine that is one of our country's most abused and deadly prescription drugs.
I can go to my pharmacy to obtain benzodiazepine, an “FDA-approved drug,” which was prescribed to my child off-label. My son was given a drug that has never been approved for children. According to the FDA, benzodiazepine’s “adverse side effects on mental development may not become apparent until many years later.” Yet, I cannot legally obtain a natural organic substance patented and proven to work by the U.S. Department of Health and Human Services (Patent 6630507), which has no side effects and is nontoxic in high doses.
The hypocrisy that lies in all of this is astounding. I’m a mom doing what my son’sspecialists told us was best for our child. Iowa's lawmakers have no place standing between patient-doctor relationships.
I am not afraid of medical cannabis. I don’t have to worry about detrimental side effects, unless you count my son as being 243 days seizure free a “harmful side effect.” Cannabis has given my son a quality of life he has never known. He is learning how to ride a trike, do puzzles, he can walk and run and he is learning how to communicate.
Cannabis has given my son the gift of finally being able to be a little boy at 3 ½, after a lifetime of suffering.
It has given my son and my family our lives back. It is time for our legislators to stand up and do the right thing.
Yet, the legislators who need to hear this are the ones refusing to come off of the House floor to speak with or respond to emails. It is incredibly frustrating that those who are supposed to speak for us don’t even listen or respond to those they are elected to represent. Iowans need to take note of who is telling their fellow sick and suffering neighbors “no” and vote accordingly this election season."
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.
I think many of you can recall the mad dash I was making last spring and summer to be able to obtain CBD legally for my son, Abram. After having very scary and serious side effects on the pharmaceutical drugs Keppra and Klonopin, we had decided to pursue CBD as an option (at the urging of our Neurologist) however due to Unity Point's stance on CBD - he was unable to help us get the Cannabidiol Registration Card.
At that point, I began my fight: both for my child's health care and diagnosis and for his personal freedoms to try cannabis as a treatment option. I wrote to every single Republican Senator as well as every single Representative in the Republican House (but that's another post entirely).
I must be honest in saying that as a mother trying to fight for her child's rights - it is very disheartening to say that out of 24 Iowa Senators - only 5 have ever responded to my concerns and questions regarding my son's healthcare and his rights as an Iowan and an American. As a parent with a special needs child, I should be spending my son's nap time as my own down time but instead I sit in front of this computer tapping away on the keys begging for anyone and everyone to LISTEN.
When I began writing to the Senators and House Members, as a mother sharing Abram's story - my son's story has changed immensely. First, he was a little boy needing legal access to CBD and I was begging for help since our city's own Children's Hospital was not helping us gain legality. Now he is a child who is TWO HUNDRED AND FIVE DAYS SEIZURE FREE and I am a mother who finally holds a Cannabidiol Registration Card in her hands today. However, they need to realize that in order to get the card, my son had to endure another MRI, a spinal tap, numerous meetings with geneticists, genetic researchers and medical researchers who were trying to help us. My son finally has a diagnosis that is incredibly rare and the only other family world-wide who shares this same mutation lost a child at age 11 to an epileptic seizure. These facts make me worry, make me squirm and make me realize even more WE NEED ACCESS NOW.
So here I am, over 100 e-mails deep just to our Iowa Senators to which only five of whom responded to my concerns. My issue with writing to our state senators is this: If you have a health issue like my son's - they don't want to hear about it unless you are in their district. I hear time and time again that I need to contact my own Representative (I already have) and to contact my own Senator (he's been to our home and met my family in person).
Health concerns of a toddler is not a "district issue". It is an Iowan issue. It is an American issue. It is also a world-wide issue and phenomenon that we are dealing with. Once again, my zip code should NOT dictate if my son's story is worth responding to.
I have a friend whose child suffers similar issues to Abram and her family was DENIED access to the Cannabidiol Registration Card because her Neurologist resides at a Level 4 Epilepsy Unit out-of-state. So, despite the fact that he is the best-of-the-best in the country and supports the use of cannabidiol, that physician is not counted due to the fact that he is not an Iowan Neurologist. How is that fair? When you have a child who has rare diagnoses like many of Iowa's most fragile constituents, you are also going to be punished for being forced to get care out-of-state because our own hospitals aren't equipped or are unwilling to help our children?
My son is 205 Days Seizure Free. (My son was healed illegally for 163 of them.)
I am not a criminal. Please quit making parents choose between being lawful and being a good and present parent. Most importantly, please, take the time to respond to the parents of suffering children in your state. Please stop making children wait. We need action from you.
Many thanks to Senator Brad Zaun, Senator Charles Schneider, Senator Jake Chapman, Senator Tim Kraayenbrink and Senator Michael Breitbach for taking the time to respond to my concerns. Your time and attention to this matter is greatly appreciated.
Hello, Everyone! Last Friday, we were given the opportunity to meet with US Senator Joni Ernst. I had previously met with her Regional Director and had written her a lengthy letter back in October. The day after I had posted my letter here, I had a phone call from Washington D.C. letting me know that Senator Ernst wanted to meet my family and talk with us in person about our concerns regarding cannabis oil.
We met Senator Ernst at the Federal Building in downtown Des Moines with our friend and fellow advocate, Sally with the Iowans 4 Medical Cannabis group. Senator Ernst was waiting for us and kindly greeted us at the door with a smile. She even held the door open for us so I could push Abram through the door and into the office in his stroller. We were able to sit with the Senator in a room where she apologized for the mix-up in responses and immediately wanted to hear all about Abram and the struggles that he has had.
It's always hard to figure out what to say when folks ask that particular question because there is SO MUCH to share and it's been a long 3-and-a-half-year struggle to get here. We are finally in a place where he is functioning and not in pain, so the little boy people see today, is not the same boy you would have seen seven months ago. So, I started our story with last October and shared with her my largest concern about our journey regarding Pharmaceutical Drugs. Pharmaceutical drugs can be helpful in some ways but in some cases the detrimental effects it has on a child is horrific.
I had taken the time to print out all the known side effects of the last two Pharmaceutical drugs that my son had been prescribed. I made sure to highlight each of the side effects that Abram has experienced in yellow so that the Senator could see the side effects my son had to personally struggle with. For just two prescription drugs, there was a total of 14 pages worth of known side effects.
The first drug I shared with her was Klonopin, a benzodiazepine. According to the Stanford School of Medicine, "Klonopin is very habit forming (addictive) and may become so in only 2-4 weeks of use, causing psychological and physical dependence." In addition to and much to my horror, Stanford states that "Klonopin's effects on children, including possible long-term effects, have not been thoroughly studied."
The side effects my son has experienced on Klonopin include drowsiness, behavioral disturbances, irritability, speech problems, constipation, agitation, sleep disturbances and more. Many of the side effects that are listed, I may not know due to the fact that he is non-verbal and he can't tell me what is hurting. I made sure to let her know that BEFORE we added in a benzodiazepine, my son was able to speak at least 3 words and has since worked nearly an entire year now to get his words back but to no avail. I also let her know that thanks to cannabis, we have been able to cut this medicine by more than 1/3 and are hoping to wean him completely off this drug at some point.
The second drug I shared with Senator Ernst was Keppra. The known list of side effects of Keppra wasn't quite as lengthy as Klonopin but it also hasn't been around quite as long either. The U.S. National Library of Medicine states that appropriate studies have not been performed on the relationship of age to the effects this drug has on children younger than 4 years of age! Yet, this drug is being given to children well under the age of 4 without anyone blinking an eye. No one is crying for more research like they do for cannabis. My child was only 2 when he was prescribed that medicine and it was a drug that our local Neurologist told us he would never have put him on! We had been sent out-of-state for help and they didn't listen when I told them that our child already had behavioral issues. Some of the known side effects of Keppra include aggressive, angry, anxiety, change in personality, crying, headache, irritability, quick to react emotionally, restlessness, shaking, trouble sleeping, etc. To follow-up what "Keppra Rage" was, I then showed Senator Ernst the video of my son on Keppra. The day I made that video was the day I finally decided upon trying cannabis oil and we have never looked back.
We let Senator Ernst know that my son has not had a seizure since we started Abram on Cannabis oil in June and that we are going on six months of happiness since we started him on CBD. I hope that by sharing the side effects of the pharmaceutical drugs versus a little boy in real-life who is alive and thriving thanks to cannabis, that the Senator understands how important her support is in the Senate.
When the topic of the safety of cannabis arose, I showed the Senator the labs of the particular strain we are using. I can get more information about what is and isn't in my particular bottle of cannabis oil than the information I can get from a pharmaceutical company about a particular drug. Children like Abram are so sensitive to everything that having a natural, organic choice in lieu of a chemical option is incredibly important. Just last month we were given Klonopin made by a different manufacturer and it had a negative impact on Abe. We happen to have a great Pharmacist who changed it right back but many people aren't aware of these sensitivities.
Senator Ernst then talked about how she wanted to see more research done before she made any decisions on specific bills. At that point, I gave her a hand-written note with the information for the US Patent regarding Cannabinoids as antioxidants and neuroprotectants. I let her know that according to the patent currently held by the United States Department of Health, cannabinoids are non-toxic. The patent even states: "No signs of toxicity nor serious side effects have been observed...even in large acute doses of 700 mg/day." I also let her know that the cited research within that patent goes back to 1942. Our son currently needs what our Neurologist refers to as a "micro dose" of CBD and has seen great seizure control and cognitive gains. I'm fighting for an expanded medical marijuana bill because as my son grows - CBD may not be the only thing he will need. It is realistic for us to prepare for the need for something stronger and CBD unfortunately doesn't work for all kids. Every child deserves a legal chance at being seizure free.
We quickly ran out of time but I gave the Senator one of the "Cannabis is Medicine" tees we made to raise awareness in Iowa before we left. I hope one day I will get to see her wear it. In the end, I hope that our meeting has helped show US Senator Joni Ernst that cannabis is medicine and that it can help. I hope that it will help her realize that marijuana needs to be re-scheduled (or even de-scheduled) so that research our Politicians claim needs to done, can actually be done legally and at the Federal Level.
I hope that our story helps her see that Medical Marijuana is more about health and quality of life than it is about someone getting high. I hope that she sees that expanding the uses of this medicine could help thousands if not millions of people.
Many thanks to US Senator Ernst for meeting my family and hearing our story. It meant a lot to my family that she took the time to meet with us and hear about Abram and how cannabis has changed his life. Now we are hoping to get her support in Washington D.C.! Regardless, she was kind to us and she gives a good hug.
All parents have their breaking point and last Wednesday, I had mine.
We'd been gone for 8 days for our trip to the Mayo Clinic for their Diagnostic Team and my son had had enough. I had had enough. We just got home from a nearly 4 hour car ride where my son whined nearly the entire way and it'd been more than 48 hours since either one of us got some sleep.
My father had finally urged me to put him down for a nap and for me to do the same. So, I put Abram down in his crib, made sure we did our normal routine of sound-maker, lavendar lotion back-rub and crib soother. Plus - the almighty blanket fluffing. But he just started to cry. I figured he was just over-tired so I went into my closet - to CRY. I just couldn't handle it anymore.
Then I heard him screaming. An awful scream. And I ran in there to find my son had screamed so loud and so hard that he'd made himself projectile vomit all over himself, his bedding, through the crib slats and all over the floor.
I yelled up the stairs to ask for my parents to help and my mom came running to clean him up while I changed all his sheets and scraped vomit off his pillows. We got him put back down and he fell right asleep while I fell into a heap on the couch and just BAWLED.
I felt like a horrible mother. I felt like a failure. I felt lost. I felt alone. And I felt ANGRY.
Since the day my son was born we have had to FIGHT. We had to tell the Nurses his lips and fingers were purple. We had to tell our Pediatrician - and another and another that SOMETHING WAS WRONG before anyone would listen. I KNEW he was having seizures before the "professionals" even agreed with me.
When you have a sick kid you lose everything: Your friends who you thought would always be there. Your family who just don't understand so they don't bother to say anything. Your faith in people and doctors and even the universe. It is HARD and no one gets it except for the people who live it.
At Mayo we were treated with Dignity and Respect. My old videos that I showed for seizure examples were confirmed as just that. When my son was collapsing and our local doctors turned us away and told us they couldn't help us and shipped us off.. it turned out that they were overdosing my child on a benzo. Those collapsing spells weren't new seizures - they were a side effect of TOO MUCH MEDICINE.
At Mayo, we were NOT frowned upon or shunned for giving our child CBD. At Mayo, we weren't told that we needed to add yet another harmful pharmaceutical with a myriad of dangerous side effects to our toddlers medicine regiment. Does that mean it will always be so? I don't know. He has EPILEPSY. Our pediatrician said it best when she said "I can't tell you what the next year will bring you. But I can tell you it's not your fault".
Today, when speaking with US Senator Charles Grassley - I admitted that although I tried my best to follow the law here - and went through all of the proper routes - I was unable to obtain the Registration Card for my son. Due to that reason, I was forced to do what was best for my child and that I was happy to report that my son is nearly three months free of physical seizures.
I did not get a congratulations. Or an "I'm happy to hear that". Instead I was quickly dismissed to another one of his advisors who talked to me about all the things that Grassley is doing to try and change things but that CBD cannot be rescheduled until there is more "research". I reminded him that such research would not be able to be done UNTIL they rescheduled CBD as a Schedule II drug - due to the fact that it is illegal at the Federal Level - no research can be done until that happens. I got a chuckle and a bad joke about "The Chicken and the Egg" metaphor.
In light of the need for "more research" I asked specifically how it is that the United States Government and the Department of Health can have a Patent 6630507 for "Cannabinoids as an Antioxident and Neuroprotectant" and that their own document states clearly that cannabinoids "are substantially non-toxic even at very high doses"
To which he laughed and said "We are Congress not Scientists".
Imagine now - if this were your child. Suffering from Day One and as a parent - being forced to be a "criminal" because Doctors, Hospitals and Politicians don't have the guts to stand up for what is right.
Things are hard when it comes to what's right and what is wrong. I have tried my best to do what is right when it comes to the extent of the law. I have followed every avenue that was presented. I have asked nicely on more than one occasion for the help that my son needs and for a medicine that can help him. I have been advised to get help from law enforcement and I have been advised against it. I have been told to "do it anyway" from my own lawmakers. I have also been told "I don't know" when asked about the specifics of a law that they themselves have made.
I am beyond frustrated. And in fighting a fight for a medicine that has a stigma so far removed from what is going on in our generation - it is most unfair. If someone had told me when I had my son that I would be fighting for legal access to CBD I would have asked them "CB What?". The truth is - I had no idea I would have to fight so hard just to give my son good care.
If you've been reading this blog - you know our struggles. You know how hard I've had to fight for answers for my son. We have been through the ringer with the medical field way before we were even told our son has Epilepsy.
We have been told contradicting information and advice since Day 1. I still often linger on the "what-ifs" of the day he was born and if this could have been prevented for the most part. Obviously, I can't prevent a Chromosome Disorder or a fused kidney or a mass in his brain but I often wonder if his Hypotonia, Global Delays and Speech Issues have more to do with his lack of 02 at Birth than anything else. But.. I can do nothing about that. It is what it is.
What I can do is fight. I can educate. I can share our story. I can try to hold back tears when I am showing a Senator a video of my son having a fit on Keppra because he can barely handle seeing my son like that. I can try to hold back an Ugly Cry as I share with the President of the Iowa's Senate's Assistant that we STILL can't get help. I can hold back my rage when yet another Physician is more worried about getting sued and "not having a legal leg to stand on".
My son deserves a quality of life that doesn't include eyeball lesions, painful rashes, more severe seizures and slower thinking. If a person looks (actually LOOKS) at the things the FDA Approves (and often rescinds) - they make think twice about giving medicines to a child that have the possibility of life-long damaging side effects over a plant. A PLANT.
It's not right and it's not fair. But I'm fighting as always. Always for Abe.
(Fighting to get a CBD Registration Card has been proven to be quite difficult. So, I have not stopped contacting my State's Representatives. I have officially written each of my State's Senators TWICE and out of 24 Senators - only 3 have responded. Yes, I get that they are out-of-session but they still check their e-mails according to the out-of-office auto responses I have been getting. I have also written to each and every member of the Republican House Members (including my own Rep Ralph Watts) and even had the opportunity to speak to the now newly voted in House Speaker Upmeyer as well.
Tuesday, my District's Senator, Jake Chapman will be coming to our home to meet Abram. I'm excited for him to meet him and see how hard he has to work to do things that his little ones have accomplished with ease.
I must admit - before Abram - I had no idea what Epilepsy meant. In my head - I pictured grand mals and only in context with what I'd seen on television. I remember seeing a great old Graphic Design campaign against Epilepsy that used the old stigmas of Epilepsy with silhouttes of children from when I was in college but that was it. I had no idea what it meant for someone to HAVE EPILEPSY. I still don't. I'm still learning.
That face down there? That's my view of what Epilepsy is what what is can do to a person. It can make me fear every single night that he might not be here in the morning. It makes me turn on the monitor a million times at night to make sure that he is still breathing. It makes me get second, third and sometimes fourth opinions because so many times we've been disappointed and let down by the people we are supposed to be able to put our trust into.
I fight for CBD because I love seeing this smile. I fight for CBD because I long to hear his little voice tell me what his favorite things are or what he's thinking or if he's hurting.
Epilepsy is a different battle for each of us. I've met so many other moms with kids whose issues are much more severe but those moms still reach out to share a kind word. Epilepsy steals your child from you little bits at a time. The Pharmaceuticals they want us to give our children can have toxic and long-lasting and often times permanent side effects and even death. Epilepsy steals their words. Epilepsy will rob you of your faith in doctors, in politicians and honestly - even your faith in yourself.
It's hard not to be able to take away your child's suffering. It's even harder when there is a medication with a lot less side effects that even has a slight possibility of making things better but yet not enough people in Politics wants to get involved and stand up for these kids that have no voice.
I will continue to fight. I am hoping that the Iowa Politicians help make things right in our home state while the Federal Government hopefully steps in and does the right thing to support H.R 1635 and S.1333.
This is the face of Epilepsy in my life. He is worth fighting for.
I have written to you (Bill Leaver and Kevin Vermeer) several times since June with no response. Julia is listed as a contact for media on the Unity Point website and I have not received a response from her either. I called and left a message for Mr. Vermeer's assistant last week and did not receive a response that way either. Incase you didn't receive them before, you can find them by scrolling past this email to the bottom as they are also included in this email.
I have shared my story with the Des Moines Register, Associated Press, the President of the Iowa Senate as well as with all of the Republican House and Senate Members. Senator Grassley's office admitted that they were aware of your hospital policy not allowing your physicians to sign off on the CBD cards, which I found shocking. I also have contacts at most of the major news outlets for television as well. I am sure Iowans would be interested in hearing that the non-profit and publicly funded hospital who touts in their commercials about how much they care for sick kids are blocking an already extremely limited bill that parents fought so hard to get.
Perhaps my last emails were too lengthy but it is difficult to share my son's story without it. I am not going to write why I think CBD is a good choice for my child. Your hospital has made it clear with its policy that you don't trust your own doctors let alone the parents of your own patients to decide what is best for their children.
So I will just share with you some facts about my child's healthcare journey. My son just turned 3 this month. In those three years he has had to fight so hard to do things that other kids and families take for granted. Two years ago, I was informed that he has a mass growing in his brain and that the mass would most likely cause seizures and that it would require surgical intervention at some point in his life.
The mass is circled in yellow below. Due to that mass, my son has to go through routine MRIs which are dangerous in so many ways to a young body. Yet, your hospital won't let us have legal access to a medicine which is anti-tumoural and anti-seizure. Instead - you would rather us put him through MRIs and multiple sedations to make sure it isn't growing. So every six to nine months we have to say goodbye to our son and pray that he wakes up from sedation and that he doesn't stop breathing during the procedure again.
In addition to the mass in his brain he also suffers a Rare Chromosome Disorder called 7q31.31 which deleted the KCND2 gene, which also pre-disposes him to Epilepsy. He is just ONE of THIRTY-FIVE people in the world who are known to have this.
We learned all of this before he turned 18 months old. However, on top of that he was also diagnosed with Hypotonia (he was unable to walk until he was 30 months old), Sensory Processing Disorder, Microganthia and more. His diagnosis list doesn't stop there but due to the fact that you have zero care in the world for what my son is going through or what my family is going through. After all, your paid Lobbyist/Employee/Manager of Child Protection at your hospital stated publicly that “We don’t know if families use it for their children that maybe four years from now they could contract cancer or something like that.”
We have seen three Neurologists and five Neurosurgeons. We have been to two Nephrologists (one who incorrectly diagnosed my son at YOUR hospital - forcing us to go to Iowa City), we have been to the CDD to meet OTs, PTs, STs, Developmental Specialists, we have put him through FOUR EEGs and FOUR MRIs and we have seen countless other specialists like Endocrinology, Orthopaedic Surgeons and Cranio-Facial Surgeons. We have been to the MN Epilepsy Group and are heading to Mayo for their diagnostic clinic in the upcoming months as well due to the fact that no one in Iowa can put the pieces together for us.
I am writing you because I think that if you even took one look at these kids and the lives that they live you would understand that they need help NOW. My son needs reprieve.
His Generalized Seizures and Abnormal Brain activity make is so that he never gets a break. Can you imagine getting shocked all day, every day and even while you are sleeping? Could you imagine how the lack of sleep would make a person feel? My son has never had a full good day. My son has never had a full night's sleep. My son has never had a summer or a spring or a winter without countless appointments and that doesn't even count his therapies. Can you imagine working for months and even years on learning words only to have them taken away by a seizure? Can you imagine how hard it is as a parent not to hear your child call you Mama?
It is heart breaking to try to share his story with people who are so against a medicine that may have the chance of changing his entire quality of life. A medicine that has been proven in other countries and other states to be effective on Epilepsy. However, my son doesn't just have Epilepsy. He also has that mass in his brain that I shared with you.
If that were your child - wouldn't you rather take the slight risk of giving him a medicine that could have the possibility of not only taking away his seizures but also shrinking that mass in his brain? A mass that all of our specialists are waiting to grow. A mass that has doubled in size since 2013. A mass that can cause life threatening and irreversible neurological damage.
If that were your son's brain - wouldn't you want to take the risk of giving him a plant in lieu of waiting for the most invasive brain surgery there is for your toddler?
If that were your son - wouldn't you appreciate the Executives at your own child's hospital taking the time to respond to your concerns?
Please sirs. Change your policy on CBD. Please help my son.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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