I think many of you can recall the mad dash I was making last spring and summer to be able to obtain CBD legally for my son, Abram. After having very scary and serious side effects on the pharmaceutical drugs Keppra and Klonopin, we had decided to pursue CBD as an option (at the urging of our Neurologist) however due to Unity Point's stance on CBD - he was unable to help us get the Cannabidiol Registration Card.
At that point, I began my fight: both for my child's health care and diagnosis and for his personal freedoms to try cannabis as a treatment option. I wrote to every single Republican Senator as well as every single Representative in the Republican House (but that's another post entirely).
I must be honest in saying that as a mother trying to fight for her child's rights - it is very disheartening to say that out of 24 Iowa Senators - only 5 have ever responded to my concerns and questions regarding my son's healthcare and his rights as an Iowan and an American. As a parent with a special needs child, I should be spending my son's nap time as my own down time but instead I sit in front of this computer tapping away on the keys begging for anyone and everyone to LISTEN.
When I began writing to the Senators and House Members, as a mother sharing Abram's story - my son's story has changed immensely. First, he was a little boy needing legal access to CBD and I was begging for help since our city's own Children's Hospital was not helping us gain legality. Now he is a child who is TWO HUNDRED AND FIVE DAYS SEIZURE FREE and I am a mother who finally holds a Cannabidiol Registration Card in her hands today. However, they need to realize that in order to get the card, my son had to endure another MRI, a spinal tap, numerous meetings with geneticists, genetic researchers and medical researchers who were trying to help us. My son finally has a diagnosis that is incredibly rare and the only other family world-wide who shares this same mutation lost a child at age 11 to an epileptic seizure. These facts make me worry, make me squirm and make me realize even more WE NEED ACCESS NOW.
So here I am, over 100 e-mails deep just to our Iowa Senators to which only five of whom responded to my concerns. My issue with writing to our state senators is this: If you have a health issue like my son's - they don't want to hear about it unless you are in their district. I hear time and time again that I need to contact my own Representative (I already have) and to contact my own Senator (he's been to our home and met my family in person).
Health concerns of a toddler is not a "district issue". It is an Iowan issue. It is an American issue. It is also a world-wide issue and phenomenon that we are dealing with. Once again, my zip code should NOT dictate if my son's story is worth responding to.
I have a friend whose child suffers similar issues to Abram and her family was DENIED access to the Cannabidiol Registration Card because her Neurologist resides at a Level 4 Epilepsy Unit out-of-state. So, despite the fact that he is the best-of-the-best in the country and supports the use of cannabidiol, that physician is not counted due to the fact that he is not an Iowan Neurologist. How is that fair? When you have a child who has rare diagnoses like many of Iowa's most fragile constituents, you are also going to be punished for being forced to get care out-of-state because our own hospitals aren't equipped or are unwilling to help our children?
My son is 205 Days Seizure Free. (My son was healed illegally for 163 of them.)
I am not a criminal. Please quit making parents choose between being lawful and being a good and present parent. Most importantly, please, take the time to respond to the parents of suffering children in your state. Please stop making children wait. We need action from you.
Many thanks to Senator Brad Zaun, Senator Charles Schneider, Senator Jake Chapman, Senator Tim Kraayenbrink and Senator Michael Breitbach for taking the time to respond to my concerns. Your time and attention to this matter is greatly appreciated.
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.
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
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.
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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