Looking back, the first realization of bad news was the day our Neurologist called me and told me that our son had a mass in his brain. I was so scared I nearly lost my mind and felt like I had a literal fist in my gut. That isn't news that you should have to hear over the phone and our journey since that day has changed immensely along the way but that original worry is still there.
At that time, we were told by a world reknown brain surgeon that the mass (cystic pineal tumor) would require one of the most dangerous types of brain surgery to remove. However, the risks vs the rewards of removing it at the time were too high and although he warned us it would cause him to have seizures, we were nervous and relieved to hear that we needed to wait for "worsening neurological symptoms" to occur before they would remove it. When we visited the Children's Hospital in our own state and we shared our concerns regarding said neurological symptoms and the three hour drive to get to their facility we were told "that's what helicopters are for".
Our friends have thrown fund-raisers for us to help us save money for Abram. One lovely lady even shaved her head in his honor and to see the support we had from our friends when we needed it most was the most uplifting part of this entire journey. No matter what we are going through, we have an amazing outpour of support from our friends, our family and our community here at home and online in the special needs community as well.
For the longest time, I thought that if we got that mass out of his head, he would be "fine". Alas, our journey has taken us on a different path entirely and I know now (or have come to terms with the fact) that Abram's case is so much MORE than a pineal cyst and that part of his diagnosis is truly a symptom of his actual diagnosis - the UBE2A Deficiency Syndrome. We cannot "fix" or "cure" what is going on in Abram's brain as I once hoped that we would be able to do. There is more going on in his brain with grey matter where it shouldn't be, atrophied hippocampus, suspected mesial temporal sclerosis, etc that cannot be fixed with surgery.
With what is commonly referred to as an "incidental finding" with a pineal cyst has become an annual (or even more often) issue of putting our son under a sedated/intubated MRI, kissing him goodbye and hoping that the anesthesia doesn't have a bad impact on his seizures. He had a really hard time coming out of it the last time, so this time - no cannabis in the morning of the MRI to see if that makes a difference.
Anyhow, after our journey to Mayo last summer, I thought that after they had found so much other stuff going on within Abram's brain tissue that the pineal cyst would be the least of our worries. Yet, when I specifically asked the Mayo Clinic why we were needing a follow-up MRI this fall - it was literally the pineal cyst that they want to check up on. Specifically to see if it needs "Neurosurgical intervention". Reading that made my stomach sink a little. I knew deep down that it needs to be watched. What they said would be a "slow grower" had doubled in size. What used to be a perfectly round cyst is now shaped like a kidney bean because it is getting squished in the anatomy of his brain as it grows. It makes me nervous. It scares me. I don't like it.
But I'm so thankful to have a Hospital that acknowledges it, that wants to follow it and that cares enough to make sure that our son's brain is OKAY. There are so many others with a pineal cystic tumors who are ignored, ridiculed and made to feel that they are mentally ill. They are told that this cannot possibly impact their quality of life but those doctors are wrong. We have sought opinions from individuals across the country from NYU, to Barrows Neurological Institute to Mayo and more.
These masses sit right in the center of the brain and press on parts in the deepest recesses of the organ that should never be touched. Sensitivity to light, sound, migraines, seizures, hydrocephalus, Parinaud's Syndrome and more are just a few of the things that can be affected by it.
Sleep is something that has eluded Abram since he was a tiny baby - as the pineal gland regulates melatonin and sleep - it isn't much of a surprise. It's just hard that here we are four years later and he still has never slept through the night. It's hard to know it's there and on his bad days it's hard not to jump to conclusions and worry that something bad is about to happen.
So, the second week in September, we journey back to MN to check in on the mass in our son's brain and to touch base with Sleep Medicine again. The thought of the MRI gives me anxiety but the thought of not watching it is even scarier.
It's hard watching your child never know what it's like to have a good night's sleep. Even the prescribed psychoactive benzodiazepines that our Neuro prescribed for his seizures would allow for him to have a full night's rest. I've learned how to live my life as if I have a newborn every night. I can't imagine how that must feel for Abram - to never have had a full night's sleep.... to never go more than 2-3 hours without waking up screaming.
I wish it were easier for Abram. But I will take these months of seizure-freedom and be proud and happy for him. I've learned to just roll with the punches and take things in tiny baby steps as they come. Worrying made me miss out on so much of his baby-hood. I'm not missing out on his toddler days worrying about what could be. If/when he needs to have brain surgery - we will deal with when it comes. And I know that our friends and family will have our backs 199%.
I've been trying to make a point of taking a few minutes each day to share something about how Epilepsy affected our family. It's only been a little over a year since we got an official "Epilepsy" diagnosis. However, it has been with us since the day my son was born. Unfortunately, it just took the doctors over three long years to figure it out.
As a newborn, my son never stopped screaming, crying, writhing in pain and rarely slept. If he did, it was never longer than a couple of hours and then it was right back to the screaming. Nothing soothed him. Nothing made him feel better, although sometimes the sound of the vacuum would relax him until the moment I dared turn it off. (I read that trick in a colic book.)
Our first Pediatrician failed us miserably. He not only missed many genetic markers that are obvious to most other doctors we have met, he brushed off all of my concerns and claimed that I was a "nervous mom" and that my son's issues were nothing more than him "being a little colicky" and "acid reflux".
It took the first ten months of his life for someone to listen and even then it was an off-chance meeting with a Pediatrician we'd never met who asked me what was wrong with Abram's eyes and had concerns for his large head. Thanks to that man, we were referred on to Neurology and we started on our journey to answers but they certainly didn't come easy.
Since the Summer of 2013, we have seen dozens of specialists including numerous Neurologists, Neurosurgeons, Epileptologists, Nephrologists, Endocrinologists, Geneticists, ENTs, Developmental Specialists, Cranio-Facial Surgeons, Orthopaedic Surgeons, Physiatrists and more.
Last month was literally the first month where Abram did not have to go to the Hospital or have any Doctor's Appointments since the day he was born!!! We spent it going on lots of walks, attending all of his therapies, going on a train ride, going on a horse-drawn wagon and checking out a Fire Truck at our tiny town's Halloween shindig. It was incredibly refreshing to have a month off.
Yesterday, we traveled to our University Hospital again where we had a follow-up with Abram's Developmental Specialist. She stated that I am doing everything that I CAN do, so that was a relief. We were informed that with the new "Neuronal Migration Disorder" diagnoses that he now qualifies for the Brain Injury Waiver and for the Health and Disability Waiver in our state - so if he should ever outgrow his current Intellectual Disability Waiver - we will have already applied for the other Waivers in hopes of never having a lapse in his care.
The Mayo Clinic gifted us an answer after we'd been fighting for so long to get one. I feel lucky that we have a wonderful Pediatrician (she started her own Special Needs Kids' Clinic) who went to bat for us to be able to get us there. It took five long months of waiting to get the referral but it was well worth it.
If you are fighting for a Diagnosis for your child, don't give up. I know that it's a long and difficult road. I personally had a lot of people ask me why I wanted a diagnosis, it is just a "label" after all. I cannot disagree more with that thought at all.
For us, a diagnoses meant everything. We needed to know what caused our son's Epilepsy and Global Developmental Delays so we could know how to best treat it. What we finally learned at Mayo explained the cause, which in turn can help us with his treatments. The information and "labels" that we got will help us help give him the best possible life by giving him the therapies that he needs the most.
Some of his new diagnoses include a Neuronal Migration Disorder (Cortical Dysplasia), issues with his hippocami twisting and Mesial Temporal Lobe Sclerosis. These issues explain nearly all of his other symptoms and diagnoses. There is no treatment or cure for his migration disorder and they types of seizures he suffers from do not have a surgical approach that can help them.
What we can do is keep doing what we are already doing: therapy and lots of it. Abram is currently in Speech, Occupational Therapy and Feeding Therapy. He "graduated" Physical therapy when he started walking but he will have to go back within the next couple of years so he can learn how to conquer things like going up and down stairs and jumping. He lost his words with his last round of serious neurological issues last spring and has yet to regain them but he is beginning to make more and more sounds and is finally able to point and use a pincher grasp at 3!
Abram's life is changing. It's not easy. It's a lot of work for him but he doesn't know it any other way. His fierce willingness to fight for mobility, to speak and to keep fighting to learn and re-learn how to do that blows any of my life's issues out of the water. This kid is incredible. He's my little fighter. My little badass. My little Abram Mayhem.
Last night was my first town hall meeting and the very first time that I spoke publicly about my son's health care issues and needs. It was hard for me to do and very emotional. I was so nervous when I was handed that microphone that my heart was beating in my chest. I honestly can't even remember exactly what it is that I even said but it went something like this:
"Hi. My name is Erin Miller. My son has been a patient of Unity Point since he was a tiny baby. Your Neurology Department found the mass in his brain at 10 months old. They guided us through his first Ambulance Ride and following Hospital Stay and they were the ones who gave us our son's Epilepsy Diagnosis last October. Your Neurologist also was the person who encouraged us to try CBD and then was unable to sign our card for us. So, I'm curious as to why your Hospital has a policy against CBD when your Physicians feel otherwise".
As I said this, I could see the woman sitting next to me furiously shaking her head "no" and instead of allowing the Nurse Practitioner (who was the one speaking at this event) to answer, the woman seated next to me was handed the microphone.
She introduced herself as Chaney Yeast, and promptly informed me that what I was saying was incorrect and that they do not have a "policy" against CBD. I don't recall what else she said because I was absolutely floored at what I was hearing. As soon as I heard her say her name I knew exactly who she was. Unity Point's lobbyist who fought AGAINST the CBD Bill in 2014 was sitting right next to me. She also happens to be the Manager of the Regional Child Protection Center at Blank Children's Hospital.
When I first started getting involved in legislature, I read about Chaney Yeast in the news because she was the woman who 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.”
I found it interesting that a woman in the crowd was trying to tell me what I have lived and experienced for the whole of 2015 was untrue. I let her know (with microphone in hand) that their own COO had spoken with me on the matter and that I have a letter from him admitting that they won't back it until the FDA approves the use of such oils.
We each only had 3 minutes so that conversation went quickly but I scooted next to her on the bleacher and showed the before and after photos of my son and told her of all the improvements that he has made courtesy of the CBD. I explained to her that her Hospital was unable to help us on more than one occasion and that it was difficult to understand how a Physician can tell us behind closed doors to try a medicine and then not give us legal access by signing our Application for a Registration Card. I reminded her that I'd written to their CEO and their VP only to be ignored. But she held fast to saying that none of their Neurologists feel comfortable with CBD or signing for anyone.
I was hoping that hearing what we'd gone through with the ups and downs of diagnoses and medical emergencies and their own physicians throwing their hands up in the air and admitting defeat in not knowing how to help - and admitting to us that they didn't know what to do would make her realize how poorly their hospital policy is affecting people. But... she held on to her point that Unity Point does not have a "policy" against CBD - that they are just waiting for FDA Approval. However, they as a Hospital actively lobbied against the CBD Bill in 2014 and will clearly continue to do so which breaks my heart for all of the other children who suffer, who need help and who are being ravaged by pharmaceutical drugs.
So, I decided to look up the definition of "policy" to see for myself if I was missing something. What the difference is between not acting on helping a patient (while waiting for approval from the FDA) and the literal definition of "policy" was. Here is what I found:
noun, pol·i·cy often attributive \ˈpä-lə-sē\
Definition of POLICY1. a : prudence or wisdom in the management of affairs
b : management or procedure based primarily on material interest
2. a : a definite course or method of action selected from among alternatives and in light of given conditions to guide and determine present and future decisions
b : a high-level overall plan embracing the general goals and acceptable procedures especially of a governmental body
Perhaps I am just reading the Dictionary wrong but it seems to me that their actions definitely prove that what they are doing is indeed a "policy" but that is clearly my own opinion. As a mother whose child has been directly impacted by this (non) policy - this is just hard to swallow. I just don't understand why they aren't helping.
She tried telling me that we are on the same team and fighting for the same things but I disagree. I don't think that it is okay for a Physician to tell a scared set of parents with a sick little boy that a) they don't know how to help and b) tell them that they should give CBD a try and then not actually be able to help. She told me that she knows that none of them are comfortable signing for the cards. In my opinion, it is wrong for them not to sign when they themselves felt that it would benefit our child. A hospital's non-policy or hesitence to not help and even hinder the cause says everything that it can possibly say without even uttering a word.
Clearly, I am thankful that our Physician told us to try CBD a handful of times before we finally decided to pursue that option. If he hadn't done so - my son would NOT be seizure free today. My son wouldn't have those awful side effects from CBD like cognitive gains, sleeping, eating, playing with other children, actually being able to play with toys and improving on his fine and gross motor skills like a champ. That physician saved my son's life. And even though I am angry at him for not standing up for what is right or what he felt was best for our child... I am thankful for him telling us about it. I understand that he is an employee and has to follow the guidelines set upon him by his employer like anybody else. It just happened to affect my family personally and I took it personal as most rational people would.
Last night was an emotional night for me and of course I barely slept a wink because all I could think about was "what if". But I can't think that way anymore. I'm changing all those "what ifs" to What Now.
I am doing all that I can for my son. I am a good mother. I am a fighter. I am an Advocate and now that makes me an Activist, too. Standing up for what you believe in is hard. I sat in those bleachers with tears pouring out of my eyes as I spoke to that woman but I said what I wanted to say.
We definitely aren't fighting the same fight but in the end, she gave me her card and I shook her hand. I just hope that she listened and actually heard.
TODAY marks 115 days SEIZURE FREE courtesy of CBD.
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.
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.
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
I haven't had the courage to post here very often because when I try to tell this story over (and over) again I just get angry. After Abe had his ride to the Children's Hospital in October in an ambulance I thought that maybe we'd have answers. We went through a 44 hour VEEG and then a 22 hour Ambulatory EEG and had no events or episodes that we noted. I went all that time and all of those weeks thinking that they had just disproved seizures. WEEKS went by and we heard no news. None. At my follow-up appointment, I was told that his EEG was "abnormal" but I needed to re-schedule the next appointment with my husband so he could go over the EEGs with us. So we did. It was then that he told us that he has "Generalized Seizure Disorder" and that his EEG was "very very abnormal". He described it as "his brain is firing from all over the place all of the time". Then he gave us a list of medications in which we should look into and chose which anti-seizure med we needed to choose. Luckily, I have a great relationship with our Pharmacist who helped us pick based on his extensive knowledge of all that is Abe.
We chose Clonazepam over the rest in hopes that it would help is serious lack of sleep, his agitated mood in addition to helping his seizures. December was THE BEST MONTH we have ever had. All of our friends noticed just from his pictures that he was so happy and he felt sooooo good. He had a shine in his eyes. He smiled. He played with toys. He walked unassisted for the first time in his life at 30 months. He fed himself with a fork for the first time all right before Christmas. Everyone said "he seems like such a different little boy".
But then it changed. So we upped his Meds in January, February and March. For most of the month of March I called begging for help to our Neurologist's Office. We were trying to set up peer-to-peer conversation between our local doctor and the Skull Base Surgeon who had been following Abe since he was 10 months old. Our Neurologist had admitted that he needed outside help. I even wrote a research paper for him on the 7q31.31 deletion and our Geneticists findings as well as the info I had from the only 4 other families in the country who have similar but not the same deletion but I never got a response regarding my findings at all which basically proved that the 7q31.31 had no other patients who suffered from seizures.
After our Neuro and the Skull Based Surgeon's first peer-to-peer, we were told their concerns were things were structurally changing within the brain. We needed an "urgent MRI" that got pushed back a week. I bawled my eyes out. Then we got the MRI and it showed that in addition to his "11+mm prominent pineal cystic lesion" he now has a new 2cm occipital cyst as well and there are changes in his hippocampus and his temporal horns. It took another 10 days for these results to be discussed with the Skull Base Surgeon (who wanted to give us an even later date but our doctor refused).
Just last weekend, he had a seizure with his SCL on that Friday, by Saturday he was crawling and by Sunday he could only take a couple of steps before he collapsed and had to crawl the rest of the way. I called the "on-call" Neuro who asked me "What do you want to do?" In some occasions, it's great to have a doctor ask you that. However, that occasion is NOT when your toddler is having Neurological Issues and no one ever even really discussed with you what that REALLY MEANS or what to look for... that is not what you want to hear.
So, she advised us to give him an extra dose of meds and bring him in if it still continued. And it did. So we went to the ER. We were admitted and told he'd need another MRI and no one would even call to discuss with our Neurologist. So they prepped him for said MRI and full sedation (with breathing tube, etc) by giving him an IV (which is horrific for him, in so so many ways) and starving him. By 7pm that night he was a WRECK. They still didn't have a sedation team to do the MRI so they let him eat and then we had to withhold food again until his MRI that was to be at 8 am.
Eight o'clock in the morning came by quickly and after waiting several hours more and with Abe having a nervous breakdown, the MRI was canceled and my son was able to eat. By 2pm that day, our Neurologist told us the Skull Base Surgeon still said he was not a surgical candidate for the pineal cyst and had no other advice. No word about the Seizures or the changes in his hippocampus or temporal horns. No mention of the new occipital cyst. No explanation. No nothing. We were told that they didn't know how to help us and that we needed to go somewhere else.
Having your Neurologist tell you they don't know how to help your child is overwhelming. I'm NOT angry with him for that at all. I feel lucky that I at least have a doctor who is honest with me and WANTS to help my son get to someone who can help. It's an incredibly scary journey when the specialists need to point you in another direction.
I have been unable to update this blog in some time. A lot has happened in my family's life since my last post. In November my son was diagnosed with a form of Epilepsy and was put onto anti seizure meds in December. That adjustment in itself has been a roller coaster.
We also moved into a new home, in a new town about an hour away with my Mom. We now live in a multi-generational home and it has been such a great burden off our backs to have some help!
Abe however continues to struggle. The first month on his meds seems like a godsend but now just 90 days later we are back to no sleeping, absence seizures and behavioral issues that suggest that something is really hurting or bothering him.
We even had to page our Neurologist on a beautiful Saturday afternoon to ask for advice on how to best help him and him being the wonderful man he is - took our phone call when he was at home with his own family. So for now, we have upped his medicine to a stronger dose as the bloodwork revealed it was still sub therapeutic and he had some low areas on some tests as well including his ATP and his red blood cells. We go back next week to retest the blood. I'm praying that the blood work is just a matter of a nutrition issue with his food since he is such a picky eater due to his SPD but we are finally starting Feeding Therapy this week as well! I couldn't be more excited about that. It's been a very long wait to get in.
At this very moment - we are waiting to hear back from our Neurologist as we finally had the ability to connect him with Dr. Shahinian at the Skull Base Institute in Los Angeles. Although he is unable to do Pediatric Surgeries at his current hospital, I feel that at this point he is the best point of reference for our Neurologist and for my son to get the care he needs since he has been following him since 2013. Truth be told - thinking of my son having to have brain surgery is absolutely terrifying and I would love for that to be a choice that he makes for himself when the time comes. I am unsure if that is going to be an option for him at all but our Neurologist feels that we NEED A PLAN in case something emergent arose and we needed help.
A few other options have opened up for second opinions but right now - he has so much going on the mere thought of starting over with a new Neurosurgeon is overwhelming but I do know a few moms submitting their child's files to Barrow Neurological Institute so I'm excited to see what assistance they may be to help the children and toddlers suffering from these lesions.
Abram just woke up from his not-napping at all really... so I have to run... but wanted to update what was going on. :)
To sum it up: I am pissed. I am so frustrated with the medical care my son has gotten since Day One. I am so tired of people being completely oblivious to the fact that even though we (as a Country) feel we live in such a great place with medical help - the fact of the matter is - it depends wholly on what insurance you have and how much money you'e got. If you or your child has a major health care issue and cannot afford private insurance on top of the Medicaid your child qualifies you are screwed. It's even worse if it's rare.
It seems to me that the doctors we have dealt with personally, would much rather tell you "I don't know" than actually do some research to try to educate themselves so that maybe they could offer some words of advice. Instead, they just point their finger at the next Specialist and send us on our way.
To help you understand my frustration, here is my breakdown in dealing with Neurology, Neurosurgery an Genetics:
Almost 18 months ago, I was told that my son had a Pineal Cyst. I was told that they are "notoriously slow growers" and that it most likely wouldn't grow at all. However, we were sent to another hospital for a follow-up MRI with a Pediatric Neurosurgeon. When we checked in and were about to put my son under anesthesia they had to ask me what we were even there for! Yes, that's right. They didn't even know WHY we were there. I had a lengthy discussion with the Nurses, the Anesthesiologist and everyone else involved in my son's care that day as to what we were looking for and much to my shock and horror the Radiologist came back and reported my son's brain scan as "normal" and "no mass lesion" when any fool with eyes can see that THERE IS SOMETHING IN MY SON'S BRAIN. (With this, I must stress the importance of YOU as a parent taking a major role in your child's health care. Get copies of everything. Get records as soon as you can. Get the Discs of all the scans and LOOK at them. READ the reports. You might be shocked at what these "specialists" are missing.)
So, I call my Neurologist who in turn is livid and makes the radiologist correct his report. Yet, you know what is scary? Typically Neurologists go by what the Radiologist says! What if that had been his first MRI? What if I HADN'T checked the scans and read the reports myself? Thankfully, we have a Neurologist who cares and advocates for his patients.
The truth is, we wouldn't be where we are or as far as we are. YOU have to advocate for your child. No one else is going to do it for you. No news is not good news. No news in actuality probably means someone is not doing their damn job and I have learned that time and time again. Anyhow, after that debaucle we met with the local Pediatric Neurosurgeon who told me that it is likely benign, can't cause symptoms, etc. Come back in one year for a follow-up MRI, which is where this part of our story actually begins.
Due to the fact that the Radiologist incorrectly reported my son's brain scan as "no mass lesion" when we were there for a follow-up BECAUSE HE HAS A MASS LESION, I wanted a second opinion. So, we got a referral to our state's teaching university (a four star hospital) and we got an appointment with what we were told was a world reknowned Neurosurgeon who came highly regarded. We also had an appointment with their Pediatric Neurologist as well to get another Neurologist's Opinion.
To get to the teaching hospital it is a 2+ hour drive to get there and when we met with this world reknown and highly regarded Neurosurgeon it was clear he had no interest in helping us and didn't even bother closing the door to the consultation. He took one look at my heavily tattooed arms, asked if I'd done drugs while I was pregnant, informed me my son had fluid all around his brain, that whatever was wrong with him happened in utero and that we needed to go to Genetics. He scoffed at my questions and quickly dismissed us.
Two hours later we met with the same teaching hospital's pediatric Neurologist who was in such a hurry to get away from us he seemed more like The Rabbit from Alice in Wonderland than a doctor. He couldn't stop looking at his watch, watched Abe roll around on the floor for less than 5 minutes, didn't even DO a physical exam and said "He looks fine to me. Come back in a year if he's still not walking." and he rushed off with his briefcase in his hand. I was livid. I filed complaints. Nothing came of it. I was hurt, disgusted and feeling betrayed by the medical system. How dare they not care about my suffering infant?!
After that, I researched day and night and read as many medical reports that I could find to educate myself as much as I could about Pineal Cysts. I joined a private support group for people who suffer from these lesions and for parents of children who suffer from these lesions. Thankfully, I stumbled upon the Skull Base Institute in Los Angeles and Doctor Shahinian. Luckily, my father and step-mother helped us out with the hefty consult fee it took to get a true professional opinion on the lesion in my son's brain. He informed us that my son's cyst was significant, that it was causing vision disturbances and that it would need to be dealt with. Last year was just not the right time. I had a hard time with understanding why his symptoms would need to worsen before this lesion was removed but the difficult truth of it all is - the surgery my son requires is literally the most dangerous sort of brain surgery there is. Pineal Cysts sit in the deepest part of the brain and most Neurosurgeons won't even touch this part of the brain until worsening (ahem, life threatening) symptoms arise. Doctor Shahinian is a Skull Base Surgeon and has actually invented surgical instruments with NASA to make endoscopic brain surgery more do-able and he is the one I will trust to remove this lesion when he says it is time. Luckily, we get to speak with him again on Friday. I am terrified of what he is going to tell us either way. Waiting is the worst but so is the thought of brain surgery. Hoping for brain surgery is even scarier but this little boy deserves to live his life pain-free and surgical intervention is literally his only option.
Doctor Shahinian told me to wait a year so I did. I tried to put it in the back of my mind and not obsess over it. I concentrated on helping my son with the things I could help him with and we dove head first into Physical Therapy, Occupational Therapy, Speech Therapy and more. We went to Genetics like the first Neurosurgeon suggested and we found our son has a Rare Chromosomal Deletion but since his father carries the deletion they felt that it was a benign finding. We saw Nephrology and discovered a horseshoe kidney that is for now operating at 100% with one doing 60% of the work and the other doing 40%. We went to Cardiology and thankfully found out his heart is "beautiful". Genetics tested him for several other clinical diagnoses but came up empty handed and told us to come back in two years in hopes that new testing may arise. So they had no genetic proof for the cause of my son's global developmental delay, hypotonia or any of his other health issues and diagnoses with are now pages long.
The year went by quickly doing all of those things and Abram was scheduled for a follow-up MRI (back at the hospital where the Radiologist failed to even note his mass lesion) and of course to our dismay our appointment got screwed up courtesy of a careless nurse not reading her reports and filing his MRI with the incorrect insurance which we had not had nor paid for in months. So, we had starved our son for 14+ hours by the time I stormed into their office with my screaming toddler who was beyond consoling at this point. She needed to see that her actions actually has an impact on her patients. A two year old who is non verbal and who has been diagnosed with an Intellectual Disability cannot comprehend why he cannot eat or drink. They would NOT let us get the MRI even though I offered to pay cash. I was disgusted. I filed a complaint and we ended up going back to the Children's Hospital for the follow-up MRI.
Our normal health care provider called us the next day with the Radiologist report which stated my son's lesion was "unchanged". I should have known better. When we went to see our Neurologist for a follow-up he didn't even know we'd gotten the MRI even though I had called his office THREE TIMES to let him know it was done and that we were coming in for discussion. He never had a consult with us about this MRI and I am not convinced that those images were ever even looked at. He did send the images on to the same Neurosurgeon's office whose nurse totally screwed us over on Abe's follow-up MRI and some time afterward I got a call from said nurse informing me that there was no need for follow-up. The Pediatric Neurosurgeon had no need to see us.
Fast forward 60 days and my son is in an ambulance after what we thought at first was a Night Terror that turned into God knows what. A seizure? Aspirating? No one knows. He spent three days after that on a video EEG that caught NOTHING and then another ambulatory EEG that caught nothing. And let me tell you... putting a child with Sensory Processing Disorder through EEGs is like putting them through torture. My son was so upset that by third day of the Ambulatory EEG that he'd clawed through most of his gauze and shredded it t pieces and managed to pop of eight of the sensors. I just asked for them to end the study at that point. What's the point? It's not accurate if the sensors aren't on. They weren't going to stay on. It was pointless. I was informed then that we were "out of monitoring options" because they were convinced they'd prove that it was seizures causing my son's issues. We have officially had a sleep deprived EEG, two 3-day Video EEGs and an Ambulatory EEG and they have found no evidence or proof of seizures.
So I went down to the Hospital in person and got a copy of my son's most recent MRI and was SHOCKED to read that the Radiologist reported that it was unchanged when in fact it had GROWN. I was beyond mad. I called his office. They would not let me speak to him to explain this to me. I called my Neurologist and he told me I'd need to see the local Pediatric Neurosurgeon. I called my health care provider whom I cannot get ahold of on the telephone and it's been two weeks.
After explaining to our Neurologist the issues I had with his friend he referred us on to the teaching University to a "new" Pediatric Neurosurgeon up there. This of course took two weeks and four phone calls to get. I'm honestly questioning myself on why I'm even going back there after how their Neurology Department treated us last year but I'm going to try to be open-minded about it. Maybe this guy will not be a total egotistical maniac. If he is... you might hear me screaming.
In addition to traveling up to the University we also have an appointment with the Skull Base Institute to speak with Doctor Shahinian.I'm scared shitless of what he is going to say. Waiting is awful. Yet, if he does tell us its time - Abe's Medicaid will not pay for us to go out-of-state for a surgery like this and I do NOT trust the people in this state with something as delicate and life-threatening as brain surgery. The surgery costs in upwards of $300,000 but if it comes down to that I have faith that fundraising will help us get what we need as SBI allows for down payments, monthly payments and the like. I will do anything possible to heal my son of this terrible ailment.
So that, my friends is our Journey with Neurology, Neurology, Genetics and the very real fear that is happening to my son. I am beyond thankful for my parents who have given us unconditional support and my friends who always send an encouraging word when I need it the most. To sum it up... this fucking sucks but my son is amazing and resilient and strong. He will overcome this and most likely will not remember any of this craziness. I however, am screaming on the inside and cry a lot when he's not looking. Just so proud that I have people to count on including friends who do research and hand-deliver it to show these jerk Neurosurgeons in Iowa that there is real facts published in Medical Journals proving that what my son has is in fact symptomatic. (Cecil, if you are reading this - you are my hero.)
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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