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.
We finally made it to the Mayo Clinic in Rochester, Minnesota last week. I must once again thank everyone for the help they sent our way in the spring so we were able to afford to stay out-of-town while our son needed to be in appointments throughout the Mayo Campus for the last week.
We FINALLY have an extensive medical team standing behind us and for us. The level of care and compassion at Mayo compared to anywhere in Iowa was beyond any expectations that we had. We did not get good news but it was news we needed to know and it is never easy to hear unexpected results after your child undergoes his fifth sedated MRI at just over 3 years of age.
In the last 7 days we met with a new Neurologist, Neurosurgeon, a Geneticist, a Genetic Counselor, a Genetic Researcher, a new Developmental Pediatrician, ENT and Sleep Medicine Physician. My son had to endure an MRI with lumbar puncture, multiple blood draws and a 16-point sleep study and another Video EEG in the last week.
They used a different kind of MRI machine on Abram in Minnesota called a 3 Tesla. (You can read about it here.) Basically, this MRI takes thousands of images in comparison to the hundreds that are taken here. Which means a clearer picture of what is going on within Abram's brain, literally.
Sadly, they found that in addition to the Pineal Cyst they have also discovered that Abram's brain has multiple abnormalities. It turns out that while he was developing, some of the gray matter in his brain did not "migrate" out to the outside of his brain. So, he has certain types of brain matter within the white matter of his brain that is not supposed to be there and he also has grey matter within his cerebellum.
These changes are what they feel are causing Abram's seizures causing him nearly all of his issues including his inability to retain language. They are not sure if he will ever be able to speak but they aren't ruling it out, either. So in that way, we will just keep on doing what we have been doing and immersing him with as much therapy and outside help that we can get. We FINALLY have an SCL and Respite Team that we adore and are working TOGETHER to do the best for Abram.
We also have been advised to do a Full Exome Genetic Test. In doing so, it will check all of Abram's Genes and see if there are any abnormalities that the three of us don't share. From there, they can try to narrow it down even more if they happen to catch something. We have joined Mayo's Research Study so any testing that happens after the Full Exome will be covered in full in trade for our DNA.
Many people don't understand the point in doing this sort of testing but this is what they need to understand: Genetic Testing is not to figure our what is "wrong" with our child. It is not to be used to point fingers at which parent a child got handed down a gene from. This is about how to prepare for our son's future. This has the potential of not only possibly catching something to help Abram live the best life but it also has the potential to help other families who come after us. Abram's story, diagnoses and genetics has the great chance of helping another child and another family know what to expect. This is about doing what is best for Abram. If they don't find an answer - so be it. If we find a causative gene - we can help pave the way on how to best prepare a family with a similar diagnosis.
The EEG found that his brain fires all of the time from all over the place, due to the fact that he has grey matter where it shouldn't be. There is no surgical fix for that type of seizure so it is something he was born with and will always have.
In addition, the feel that the pineal cyst is significant and want us to get another scan in 6 months. I was hoping that this would be the last time they would tell me it was "incidental" and "not causing any issues" and we could go on with it. It just sucks is that the reality of it is that it requires constant monitoring. And constant worries about the effects of the Anesthesia on our son.
The best news was that when I shared that my son was on CBD and had been 9 weeks seizure free they all didn't look the least bit shocked and were pleased to see that it was working. It was even referred to as an "innocuous drug" and without side effects.
I was told that there was NO NEED for the change in meds (in addition to his Clonazepam) and that if nothing's broke - you don't fix it.
CBD has given my son the first summer in his life where he was able to enjoy it. He laughed more. He loved more. He got to be a little boy for the first time in his life.
He got to run the first time and get a skinned knee at his Grandpa's. He got to go to the splash pad and have fun with other kids. He got to go to the play area at the mall for the first time ever without hightailing it for the car because it was too overwhelming.
We didn't get the answers we wanted but we got the ones we needed. I officially know that I am doing all that I can for my son. We officially have a TEAM of medical sub specialists who are willing to help us and take care of our medically complex boy.
I've been listening to my mom's old record albums a lot lately. When we moved in together she brought her crate of records that had been stashed away - probably since before I was born. When I wanted to listen to Creedence's album "Willy and the Poor Boys", I had to slice the piece of tape she had put on the edge to keep the record from falling out. The song "Effigy" just struck me and gave me goosebumps: particularly the lyrics "Silent Majority Weren't Keeping Quiet Anymore".
Before Abram, I always knew the medical field was filled with holes but I had no idea how many. I had no idea how hard we'd have to fight to get someone to listen to me when we wouldn't stop screaming as a newborn. I had no idea that 3 years later we'd still be fighting for diagnoses and for good decent doctors.
We finally have a wonderful Pediatrician who we love and adore and the best Pharmacist a person could ask for. He's known me for 15 years and has always helped me with choices on what is best for me and mine.
I must admit that I was pretty hurt by the fact that our Neurologist who had been seeing my son since he was 10 months old was unwilling to help us. I am certain that much of his inability to help comes from the fact that his job relies on his compliance with Hospital Policy but it came with great disappointment. It's hard to fathom how someone can tell a parent that there is a medicine that can help your child, encourage you to get it and then yet refuse to sign a Registration Card to prevent you from being prosecuted. It's just disappointing because I thought they really cared. I was wrong. What's even worse is that everyone is more worried about getting sued instead of worrying about what is right. Yet, I have to remember that our Neurologist has to worry about their job and their own family as well. I should not expect him to risk his livelihood for my child. I should however, expect that a Hospital would do what is best.
The last three years have been spent fighting for doctors, for answers, for specialists and then sub-specialists. I feel like I'm always advocating, researching and reading and then re-reading. I had no idea how hard it would be to find a team that would cover all of our bases and make sure that everything is going well. I think we are finally on the right track but only time will tell. Kids with complex medical histories are hard to service and I fear that the changes our Governor has made to his Medicaid will only make things worse in 2016 but I'll just fight for that too.
For now, my focus is on getting the Iowa Law changed so my son can get help. The current CBD Bill in our state isn't enough. There are NO Neurologists in the State of Iowa who are willing to stand up and help a little boy get better on a natural medicine like hemp oil. We NEED a more comprehensive Medical Marijuana Bill put into place so children and adults alike don't have to suffer from seizures, neurological disorders and auto-immune diseases and more.
I will always fight for Abe. It's just unfortunate that it has to be so hard to get the right care for kids who confuse the system. It's hard to get the right care when you know more than a lot of the people you are going to for help in these Hospitals. It's hard to know who really wants to help you and who just wants your money. It's hard to know if I am ever making the right decisions. So I just have to go with my mama gut and fight for what I feel to be right.
I just know that I want what is best for my son. And adding more Pharmas to an already globally delayed child is not the answer. He deserves a quality of life where he can be a kid!! He deserves a try at the very least. He has been on some form of pharmaceutical medication from Day One and it's time to stop.
He deserves to be a kid.
And I hope that someday he'll read these Blog Entries and be happy. But for now, I'd settle for hearing him call me Mama again. The seizures stole that from me too.
The silent majority aren't keepin' quiet anymore.
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.
Yesterday, I posted my third and final attempt at contacting Unity Point/Blank Children's via their VP and CEO. Although, I never did get an official response from they themselves, the President and COO at Blank Children's Hospital contacted me to address my concerns.
I have to be cordial in saying that he was a polite man but he advised me he was going to tell me what I didn't want to hear. I already knew that.... but I wanted to be heard. Not ignored. This is a child we are talking about.
The facts are: Unity Point/Blank Children's opposes the CBD Bill here in Iowa and will not consider backing it until the FDA Approves it.
I get it. It's big business and big pharma and there is nothing that I can do about it to change anyone's mind.
It's just sad that parents and physicians aren't able to make choices for their children and their patients without policies blocking their way. My son has suffered enough. He has been through three years of absolute hell in dealing with the medical world from the very day he was born.
It doesn't matter that they don't know how to treat his Rare Chromosome Disorder. It doesn't matter that they didn't know how to treat him when we come into the ER with collapsing spells. It doesn't matter that they put him through unneccesary IVs and starve him for hours and hours for tests that never happened due to the fact that no one wanted to call our neurologist to find out he'd just had an MRI.
It doesn't matter that he's only 3 and that we have to travel out of town and out-of-state to get the help that we need. It doesn't matter that his own Neurologist who has been seeing him since he was 10 months old won't sign an card to ensure that we won't go to jail for giving him a medicine that comes from a plant.
It doesn't matter that he's got a massive kidney and that a good portion of anti-convulsant medications are out due to the fact that they are metabolized in the kindeys. It doesn't matter that the only two medications that we have been advised are our last options can make him go backwards and lose the skills that he has worked so hard to gain.
It doesn't matter that he's had to be in multiple therapies since before he could crawl - just so he was able to sit up. It doesn't matter that at 3 he still cannot even say Mama or that he can't feed himself because his pincer grasp is just now starting to work.
It doesn't matter that the mass in his brain makes him feel pressure in his head so badly he'll slam his head into his crib for hours. It doesn't matter that the pressure from the mass in his neck that has been ignored for months has made him start hitting himself in the head and ear.
None of what my son has gone through or will go through matters to them. They will not back the CBD Bill until the FDA Approves it. Which could take decades. THESE KIDS DON'T HAVE YEARS TO WAIT.
But you know what? It doesn't matter that my kid doesn't matter to them.
It doesn't matter that they told me No. It doesn't matter that our Neurologist doesn't have the guts to do what is right. It doesn't matter that our own Physician and our own Politicians have even advised us to do it anyway.
None of that matters.
He is my son. HE MATTERS. I am going to fight to get him access to a medicine that could literally change his world. THAT IS WHAT MATTERS. KIDS MATTER. LIVES MATTER.
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.
This is my son on Keppra.
Dear Mr. Bill Leaver,
I am writing to you in regards to Blank Children's Hospital and my non-stop fight for the right to have access to medicine to help and not further harm my soon-to-be-three year old child. Your current Brand Campaign is "The point of Unity is you.” A touching slogan but not exactly true in its entirety based on my most recent experience with Unity Point Health and Blank Children's Hospital in Des Moines, Iowa.
My son has a host of medical issues including Generalized Seizures, a Genetic Brain Disorder, a Cystic Pineal Tumor (a growing mass in the middle of his brain that requires MRIs every 6-12 months that require full sedation/anesthesia on my tiny child - which in themselves are dangerous and life-threatening), Hypotonia, a Rare Chromosome Disorder called 7q31.31 that has deleted the KCND2 gene that pre-disposes my son to Epilepsy and he has a host of other issues including global delays, being non-verbal, having an Intellectual Disability and more.
We have had to fight tooth and nail since the day he was born to get proper care for him and due to hospital negligence from the moment he arrived on this Earth (not related to Unity Point) he has suffered endlessly. Some of which could have been prevented with proper medical care and attention.
I read an interview that you did with The Advisory Board Company last May and you seem like such a kind, caring and compassionate man. I too grew up in a middle-class household in small town Iowa. I was the only-child to a single-mom who taught early education for over 30 years and my father was a Federal Employee for the entirety of his career with the Corps of Engineers and my Grandparents were farmers and business owners. Making a difference in other people's lives was something that my family prided themselves on and instilled in me at an early age. I grew up knowing that family came first but that you should also help take care of other people as you also mentioned in your interview last May.
My son by definition of the Iowa Law has intractable Epilepsy. We have been seeing our Pediatric Neurologist since before my son's First Birthday. Literally, on the day of his First Birthday Party we were consulting with a world-renowned Brain surgeon in California about the possibility of needing brain surgery to remove my son's cystic pineal tumor. On New Years Eve came the news of the rare Chromosome Disorder that even your Hospital Staff admittedly know nothing about and can be of no assistance with, due to the fact that it is indeed so rare.
By his Second Birthday he was labeled as having an Intellectual Disability, was unable to walk and it became clear he was globally delayed and non-verbal. The seizures had been intermittent up until then but this past fall diagnosed us with a Generalized Seizure Disorder and we have since tried and failed two Epileptic Medicines. The anti-convulsant my son was on turned him into a completely different little boy. He is currently still on Clonazepam (a benzodiazepine) which does nothing for the abnormal brain disorder he has. Even on the Benzo his brain still fires all the time - throughout the day and night in generalized spikes and slow wave complexes. I know that many families have tried 10 times that many medications and more and their children suffered greatly for it. I for one do not want my son to be a pharmaceutical lab rat. The side effects are scary and after seeing him on Keppra I am terrified of what may happen to him.
In your interview with The Advisory Board Company, you stated that you "really encourage people to get out of their comfort zone and be willing to try and fail". I understand that is in reference to your employees and your branding but it should also apply unfalteringly to your patients as well. We have been through the ringer and back with specialists and sub-specialists and had even been told that our son may never walk - to him needing a jaw-distraction surgery - to needing a life-threatening and dangerous brain surgery - to a host of other issues and ailments that most parents have never heard of and that most parents should never have to see their child endure. However, we do this and continue to play this never ending game of doctors and specialists without ever getting any real answers, hope or help but no matter what happens we keep trying - even if it is endlessly out of our comfort zone.
My son's Neurologist, your employee, is an amazing and kind-hearted person. They have gone above and beyond helping us when we really needed it. They have been humble enough to admit defeat when they didn't know the answer and instead of telling us that they can help us they have told us that they don't know how to help us on a number of occasions.Shortly after my son's most recent MRI he began to collapse. We were admitted to the ER and were told the next day that they (Our Neurologist) didn't know how to help us and that we needed to transfer elsewhere. We went on to the MN Epilepsy Group at the Children's Hospital in St. Paul several weeks later for yet another VEEG. However, that morning at UnityPoint/Blank Children's Hospital, we were actually having to share a room that night because your hospital floor was so full. After we got that news, our roommate asked for us to be in a private room because she felt that something like that was not meant to be overheard by a stranger and that we deserved to have a private room to mourn the fact that no one knew what to do for our child.
Before, during and after that time CBD had been mentioned in regards to other patients having good experience and having visible and shockingly great improvements after using it. Our Neurologist was always very careful in saying that they were not "endorsing nor condoning" but mentioned on more than one occasion that we should go to Colorado to get help. However, Iowa Law has passed a Bill that enables our Neurologist to sign a Registration Application to make it legal for the parents to give this medicine to our children. I researched what I felt would be a good fit and finally approached them with a request to help us obtain the legal backing from the state by filling out what is actually a tiny portion of an application for us to have a license to carry/have on our persons the CBD. The law does not in fact hold the Neurologist accountable for what happens after. It just asks whether they have seen our child and treated them for intractable epilepsy for six months.
Due to the fact that our Neurologist themselves had brought the CBD up to us , we were not prepared to hear that in response to our request to help us *not* go to jail for giving our son an organic medication that has the possibility of not only staving off his seizures but also shrinking that horrible lesion in his brain, we would get a very generic and non-personal response that said:
"We, the neurologists at Blank, are not signing any authorization cards for CBD use. We went over the law with everyone here and we are not obligated to sign or prescribe. We feel that at this time CBD should be given in the context of the FDA approved trials only and there are other centers which are conducting those trials."
Needless to say, this was not only a shock but also a blatant slap in the face for a parent who had gotten their hopes up. I had spent HOURS researching CBD oils and what would be the best strain to help reduce seizures and shrink my son's cystic lesion. I took a great deal of time writing the perfect letter to our Neurologist about why I feel that CBD is the best choice for my son as I am taking a great deal of time to write to you. Having a chronically ill child is TIME CONSUMING and to fight and fight and fight only to be shoved into the mud and be refused help is ghastly. Horrific. Soul-crushing. Cruel. And also, downright inhumane. We are talking about a soon-to-be three-year-old boy who has never had the chance to live a life without pain, without having to FIGHT or without his own brain betraying him with seizures and taking away his words.
In your interview, you were asked, "What is "most right" about UnityPointHealth?" and you stated"What is "most right" is the culture and focus of our organization, from our board to our executive teams, to our physicians to our employees. They get what we are trying to do. We changed our vision statement four or five years ago, to "best outcome, every patient, every time." And people believe that is what they do, every day. What is right, whether we're talking about care coordination or how we integrate systems, the focus is [always] on the patient here. And I will tell you, moving away from hospital-centric—and that's what we were, four or five years ago—that vision statement was a powerful declaration to our physicians. That now the focus is not on margins, but best clinical outcome. And you're going to do that every time. Well what did people get into medicine for? To help people. And do you want to help them 90% of the time, 80% of the time? No, you want to help them all the time."
If you truly believe in "what is right", I implore you to take a look at your business model again. You can say "The Point of Unity is You" but it's just a hollow promise if you aren't willing to take a risk (risks which you claim are important to take). If UnityPoint as an Entity is not willing to let their Physicians take a chance and do what is right for each individual patient you aren't doing anything right at all.
If Iowa LAW feels that we have the right to have access to these medicines, it doesn't seem right that your entire Pediatric Neurology Clinic (which by the way was the *only* option we had in Des Moines when we started our journey) are not signing any authorization cards when they themselves were the ones that brought it up to us as something that could potentially help and change our children's lives.
If your focus is truly on the best clinical outcome it seems to me that Blank Children's entire Pediatric Neurology Department is not only going against what you say is so "right" about UnityPointHealth but the very Hippocratic Oaths they swore to follow when becoming Physicians. If you truly want your Hospital to "help people all the time" you need to allow your Physicians to decide what is best for THEIR patients - even if that means taking a risk.
UnityPointHealth should be about more than just a brand. You yourself even stated, "a leader always has to step up and do the right thing". Hospitals can indeed gain credibility or lose credibility. You even stated in your interview "A great depleter of credibility is when you don't address people problems. I say to our managers, when you have a people problem—fix it."
There is a revolution in medicine coming. Instead of sending your patients to other cities and other states to get the care that they need - take care of them instead. Allow and encourage your Neurologists at Blank Children's Hospital to sign the Registration Cards for Canibidiol so we as parents can help our children the best. Help get the laws changed so you don't have to take the risk at all. Please, just do something.
I think you said it best:
"...When you don't address a people problem, everybody else in that work unit, in that department, that division, knows you have that problem. And when you don't address it, there are two conclusions that they reach. Either you're not smart enough to see that you have that problem, or you won't deal with that problem. That just depletes your credibility. You didn't do the right thing. They can't trust you now to do the right thing. That's why a leader always has to step up and do the right thing."
Please sir, I implore you to step up and do the right thing. You already have a people problem and its only going to get worse. When it comes down to it, UnityPoint is a business and you are losing business. Hundreds of thousands of dollars are going to other hospitals in other cities and other states as they are wiling to stand up and take the risks that you as CEO claim are important to make. Just as I - as a parent - am willing to stand up and take the risk in saying that I want to be able to CHOOSE to give my child a medicine that came from a plant instead of a lab and all that is standing between me and helping my child is your employees signature in a box. An employee who has said that this medicine may be able to help our child. It's that simple.That's it.
Please, step up and do the right thing. Help parents such as myself gain access to CBD without having to risk everything to do it. I don't want to have my son be a medical refugee in another city or in another state simply due to UnityPointHealth being unwilling to stand up and fight for what is right for parents and children who are suffering endlessly with debilitating diseases.
A worried Mama
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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