I have something HUGE to share. So big that I've been sitting on it... wondering if I should knock on wood for fear of saying it aloud may make it just disappear again.
To be honest, the entire last year has been a huge struggle. Something happened last March that started a serious chain of massive amounts of self-injurious behaviors in Abram that it felt like everything just got out-of-control. We increased his CBD:THC ratio and it helped immensely but with Iowa's current law we are unable to obtain the proper ratios we need to help him and/or are unable to afford the amount we'd need to purchase in order to do so.
After he was struggling immensely at school, we went back to mayo where he was diagnosed with "behavioral dyscontrol" which is common in children with brain injuries. Abram has cerebellar cortical dysplasia, which is something he was born with and is considered a brain injury.
With the EEG we learned that Abram's brain was still having generalized discharges (affecting both sides of the brain) and then they reported that he also had two new focal points (a particular spot in the brain where a seizure can start) which he didn't have previously. In the Epilepsy world - discharges can turn into seizures. So the fact that his brain was changing was alarming and his Neurologist told me that it was "just a matter of time before something BIG happened".
People often say "So, the Cannabis didn't work?" Yes. IT DID and it IS. Cannabis has prevented those seizures from coming out as physical seizures and for that we are extremely grateful. Abram has abnormalities in his brain that are known to be medicine resistant aka "intractable".
The cannabis is doing something so huge for him that we have not seen any physical seizures in nearly three-and-a-half years! However, his EEG was bad enough that our Neurologist suggest that we add in another medication - to which I was hesitant to do. Pharmaceuticals really did a lot of damage to Abram and traumatized me as a parent - especially when my son regressed due to the fact that right medication was not chosen properly the first time.
In November, after seeing how much my son struggles in elementary school with . his peers, his father and I decided it was time to add in a second medication along with the cannabis to see if it would help get his self injurious behaviors under control and allow him to learn.
It's a medicine that takes 11 weeks to ramp up to his specific dose used for both for mood stabilization and for seizures. Right now, we are only on week 4 of 11 of this new medicine (Lamotrigine) but we have seen improvements in his behavior, his attention span and his self-injurious behaviors. His therapists have reported that he can sit for a little longer (currently his attention span is literally under 2 minutes and cognitively he is about 2 years & 8 months old).
Many people would shun me for adding in a pharmaceutical (including me - just 12 months ago) but the realization that my son slamming his face into the concrete, walls and tables wasn't being helped by the cannabis oil that Iowa's law limits to just 3% THC, I had to do something else in addition to what he's already taking. If Iowa's law changes to where I can help my child with cannabis alone - I will reconsider my options but for now my biggest priority is to keep my sweet boy's face and teeth the way it was intended.
I digress... to the point of this whole long winded blog entry:
Abram is now engaging in imaginative play!! He is 6 and the other day he took me to his kitchen, took out a pan, put two food items into it, turned on the stove, stirred it, took two plates out, put the food on each plate and served it to me with a fork so that I could pretend to eat with him. THIS IS HUGE. I did not give him instructions on what to do. He did this all on his own. I was so in love with that piece of corn on that tiny plastic plate that I cried.
This is a huge developmental milestone.
Second - Abe loves this show on YouTube called WILL IT BUST!? (By Garage Door Fail). For Christmas he got a Ghostbusters Firehouse Garage and he actually put a cracker under the door, pretended to put the garage door down on it and when I asked "are you playing "will it bust?" he said "yeah!!". So.. just like the guy in the video... I yelled "WILL IT BUST?!" and he smashed the cracker with the door and signed "ouch". It was the best thing ever!
He's pretending. He's mimicking us. It's the best thing ever.
Yesterday, Abe and I spent a great amount of time visiting with Tony Leys and Brian Powers of the Des Moines Register discussing why my son is unable to have his medical cannabis oil administered at school by a school nurse.
First and foremost, I want to say that our school has been INCREDIBLE. Despite the fact that they are unable to give my son the medicine he needs (at no fault of their own), they have gone above and beyond what I could have ever imagined to make sure that he is happy and as safe as possible at school.
Abram has TWO para professionals who work with him every single day and who communicate with me daily on how his day goes. He has an amazing bus driver whom he loves and who has made my life so much easier because he LOVES riding the bus to school. He has two teachers who care about his success as well as an occupational therapist and speech therapist who work hard with him to help him succeed. He is loved and welcomed there by his peers and often gets artwork sent home from his friends who love to draw him things. It makes my heart swell.
The school has also built a sensory room so that Abram can get breaks to go swing and calm down on a hard day and they have brought in a behavior team that is helping to pin-point what is causing his self-injurious behaviors and the trend line from that data is going the right way. We had a rough start but things are getting better for Abram and he isn't coming home with goose eggs and bruises like he has in the past.
To our school and all of the staff that makes my son's life easier - THANK YOU. You have no idea how important it is to me that my son goes to school and feels loved, welcome and taken care of.
When it comes to the administration of Abram's medical cannabis oil, the school was forced to deny our request due to the fact that the Iowa Department of Education is not allowing school nurses to administer or participate in the program. Due to the fact that state law is inconsistent with federal law, Abe's school would risk losing much needed federal funding if the school nurse were to possess let alone administer his medicine on school grounds.
Despite the fact that both the Iowa Department of Health AND Governor Reynold's office stating that IF a school nurse were to become a "caregiver" for Abram (like his immediate families are) they could "legally" administer the oil, our state's Department of Education forbids it do to the fact that medical cannabis is still a Schedule I Drug. Asking a school nurse to become a "caregiver" under the current law does not provide him or her any protection and could put the school at risk.
In addition, the Drug Free School Zone Act still plays a major part in this issue as well, making it illegal for me to have my son's medicine within 1,000 feet of school property. In my son's IEP, the school did say they would allow for me to remove him from school grounds to medicate him, however, with him needing structure and routine, I fear that IF I were to go and disrupt his school day every day at lunch-time that I may just ruin his entire day and throw off his routine entirely. Pulling a child with special needs from their day, putting them in their car seat and driving 1,000 feet away to give them medicine seems like a crazy thing to have to do when the State of Iowa has already admitted it is MEDICINE by finally allowing growth and distribution within our state lines.
Many people site the fact that Epidiolex is now FDA Approved. However it is only approved for Lennox-Gastaut Syndrome and Dravet Syndrome, so Abram doesn't even qualify for it. Not to mention, the price tag of that drug is $2,708 PER MONTH and we certainly could never afford that without insurance covering it. Not to mention, a good portion of it is ethanol, artificial flavoring and sucralose - a known seizure trigger.
The fault in this issue does not lie with the school - it lies with our Federal Government not taking the proper stance on medical cannabis. I don't understand how this can continue to be an issue. When you have a medically complex child, life is already difficult to navigate most of the time. So when you add in politics, lobbying and advocating for law change it can sometimes be too much to bear.
I just want my son to have the same rights as any other child in need of medication at school. I would love it if my Federal Legislators would take a stand and do the right thing for families like mine. I've been begging for help from my Federal Senators and Representative in Congress for years now. Things need to change at the Federal Level so that medically complex patients and families don't have to continue to suffer.
Click on the image below to read the Des Moines Register Article
I've never met another human more determined, hard-working and filled with love than my son.
They said he may never walk. They said we could do PT until we were blue in the face and it wouldn't make a difference. They said he had a "cognitive disconnect" and that he'd never understand that a picture represents an object.
Now he's riding an adaptive trike, walking up stairs alternating feet, going down them with assistance and he can jump. Now he's using sign language, picture exchange and using a communication device to tell us what he wants.
Never let anyone tell you what your child will or won't do... Even if they have special initials behind their name. Abe will do all the things he was meant to do, when he is ready to do them and I will celebrate all the tiny-to-most (but HUGE to us) milestones in his life.
He has taught me to slow down, to appreciate the little things, to love hard and to forgive easy. He also taught me there's a reason to smile every single day no matter how bad of a day you've had.
You've just gotta keep your chin up, surround yourself with people who make you laugh and love the little things in your life that make up the big things. Thanks Abe. You changed my life.
After 4 years of relentlessly fighting to change laws for medical cannabis for Abram, I was able to attend the invite-only Grand Opening of MedPharm Iowa. We got to tour the grow facility as well as the labs where they will be making my son's medicine.
I cannot express how grateful I am that this is happening in our state for Iowa's sick and suffering. I am honored to know the amazing women who fought for this to happen in 2014, who I feel played a crucial role in my son being well and celebrating over 3.5 years of seizure-freedom and who I am lucky enough to call my dear friends. I will always be thankful to you ladies for blazing a trail so that kids like Abe could get the help they very much needed.
I am especially grateful to MedPharm Iowa who always make it a point to include patients and caregivers in their plans and try their hardest to deliver products that we all need. They took a chance by investing $10 Million Dollars just to help Iowa's sick and suffering so that families like mine can give their children a quality of life that they deserve.
I cannot express what it mean to see plants growing in Iowa and knowing that soon enough, my son will have the medicine he needs, right here at home. Our dispensaries open in less than 30 days I couldn't be more proud and happy.
An Interview About Abram
Des Moines Register - Photos of the Grand Opening
As I was taking Abe in to school to get his Kindergarten pic taken, I had the harsh reality of seeing how other children look at my son and my heart shattered into a million pieces.
I've seen those looks before. The side eye. The mouth gape. The leaning away from him as if they could "catch" what he has just by sitting or standing next to them.
I hate it.
I can't help but to think things like: what do your parents teach you about children like Abe? do they tell you things that make you scared? do they tell you things that maybe they themselves as adults don't understand but they are too afraid to ask? do they say mean things about him?
Then I Wonder:
Does Abram understand that they are being cruel? Does it hurt his feelings? Is this why he cries and is sad when he comes home?
I don't know because he can't tell me.
I've seen him try to engage other children and I've watched kids just get up and walk away from him as if he's invisible. It is gut wrenching.
I want to just say this:
Please teach your children to be empathetic to ALL people. Show them how to be kind, how to make new friends with people who may not communicate or look the same as they do. Teach them to say "hello" instead of telling them to look away. Show them how to be good humans. If they treat another person unkindly, correct them and show them how to apologize and start over.
Children learn from example. Do your best to be the smiling face in a room full of scowls and show your kids how to be kind, empathetic little humans.
Hello, Everyone. I haven't posted in a while and haven't been very consistent with my posts lately and for that I apologize. The year 2018 for us has been a difficult one for Abram as his self-injurious and aggressive behaviors increased at school and then we spent hours meeting with different specialists to get to the root cause of the flip/major increase in his behavior. We sought help from Neurologists, Behavioral Therapists, Developmental Pediatricians, Autism Specialists and everything else in-between.
In May, Abe had an overnight EEG to rule out seizures (he still has focal and generalized discharges but they are no longer going into seizures) and Mayo Clinic diagnosed Abram with behavioral dyscontrol. To put it in simple terms, due my son's brain abnormalities, epilepsy and atrophied hippocampus, he simply cannot help his impulses. Add to that his intellectual disability and Abe spends a great deal of his life feeling out-of-control - at least this is how the psychologist recently explained why he is so "bossy" about certain things.
After our Mayo stay, we decided to try a medication called Guanfacine - a non-stimulant blood pressure medication that is prescribed off-label to treat children with ADHD. Thankfully, his self-injurious behaviors (SIBs) decreased immensely and although it will most likely never be perfect, it has been an easier couple of months. However, we've also been on summer break and out-of-school so the true test of the medication will be when Abe starts Kindergarten next month. To give you an idea of who often his SIBs were happening, on his worst day with his aide at school in the spring, he'd hit her and his peers 53 times and he'd banged his head into objects 23 times in just 3 hours. Today, he bangs his head a handful of times and hits about the same amount but it is manageable and almost always has an obvious trigger.
Children with self-injurious behaviors not only risk damaging their beautiful little faces, teeth and eyes but they can give themselves serious brain injuries by doing it - which is exactly how Abram found himself in the ER last week with an assumed subdural brain bleed and a terrified mom and grandma.
Abram had hit his head pretty hard last week while he was with his respite worker. Head banging isn't unusual by any means but he'd hit it (3) times on his swing and had done it so hard that it shook the floor above it where my mother and I were chatting. I didn't think much of it since it's a normal occurance but by that afternoon he had vomited and by the morning, he was screaming in pain, holding the back of his neck and vomited again.
We'd just by chance had an appointment at the University Hospital so we headed out on the 2.5 hour drive to go see our Developmental Pediatrician and the Psychologist who was supposed to do the official ADOS testing for a possible "official" vs "clinical" autism diagnosis. When we arrived, Abram was very much not himself. He was still screaming/crying in pain and holding his neck. I'd shared what had happened the day before and the moment our Pediatrician entered the room, she informed us that we needed to go to the ER right away as she feared he had a subdural brain bleed. She walked us right to the ER, explained to the staff that he has self-injurious behaviors and that he'd need a CT scan, immediately.
I made the mistake of googling a subdural brain bleed while we waited. BIG MISTAKE. But I digress, the getting of the CT scan in and of itself was traumatizing for poor Abe. He's been through so much medically that the sight of medical equipment sends him into flight or fight mode which makes things even more difficult. Because he is medically traumatized, he is literally unable to lay on a CT scan like a neurotypical child may be able to do.
Instead, he'd need to be sedated and thus we started our scary journey of watching him be drugged with benzodiazepines to which he had zero reaction and then ketamine. He'd gotten so much medicine that I had to sign a waiver that it was possible for him to stop breathing and they had a crash team in the room to help him with oxygen, heart monitors and the possibility of intubation. It was terrifying.
Having a team of 5+ doctors in the ER circling your child - just waiting for it to go badly is absolutely terrifying and one of the scarier experiences I've had so far. Much to the shock of the ER team - Abram literally never went to sleep. The doctor and nurses eyes kept getting bigger and bigger as Abram kept moving and responding to stimuli. At some point, he was at least out-of-it enough to be able to be strapped down to the CT scanner with large velcro straps and I had to put on a lead vest so that I myself could hold his head still while it was in the machine.
Shortly after that, he began hallucinating so we had to wait a long while for the medication to wear off before he was released from the ER. Thankfully, this time his CT scan came back normal (aside from his actual brain abnormalities) and we were able to leave and go back home. However, the reality of how bad head banging and self-injurious behavior rang true. It was a scary situation but thankfully it wasn't more severe and our son got to leave the hospital without proof of an additional brain injury (aside from the one he was born with).
We got lucky and appreciated everyone's kind words and love when it was happening.
I had the opportunity to speak at a press conference this week put on by Iowa's only licensed medical cannabidiol provider. I was able to share Abram's story and did my best to sum up the last 5+ years of our life in under three minutes!
Afterwards, I was interviewed by channel 5 news - you can see that piece below! (Just click on the picture). The interview took place in the elevator because Abram refused to be interviewed anywhere else! haha! They are in fact his favorite place to be.
My speech went as follows:
My name is Erin Miller and my son, Abram has been a registered Medical Cannabidiol patient since 2015.
Abram has a rare medical condition called UBE2A Deficiency Syndrome. It is a genetic disorder that has caused him to have epilepsy, brain abnormalities, Kidney defects, immunodeficiency, and autism. So far, less than 50 people world-wide have been diagnosed with UBE2A. So, Abram’s medical team are officially learning from him and not vice-versa.
Abram has had great success using CBD to treat his seizures. Today, he is currently 2.5 years seizure-free!
By using cannabis, we were able to wean him from a psychotropic drug called Klonopin. A benzodiazepine that increased his seizures, stole his words and caused him to regress physically, mentally and cognitively.
Today, Abram is 5 years old and can finally say “mom” again. He is making new sounds, knows over 50 signs, and he can identify most of the letters of the alphabet! I have no doubt that medical cannabis has given my son these gifts.
However, Abram still struggles. Along with the numerous medical conditions come behavioral issues, self-injurious behavior and outward aggression towards others.
In February, Abram began to exhibit these behaviors at school. On his worst day, he hit his school staff and peers over 50 times and he hurt himself over twenty times - resulting in huge bumps and major bruising on his forehead. As a parent, it is heart wrenching to watch. Our son’s behavior flipped like a switch and no one knew why.
We reached out for medical help but Abram’s numerous doctors and specialists could not find an issue in which to treat him acutely. It was suggested that we trial an opiate medication to rule out pain from his brain abnormalities but we decided the side effects of that medication were too risky after what Abram has already endured. I don’t feel comfortable putting my child on an opiate when the rest of the country is begging to get OFF of them.
In states like Minnesota where autism is a qualifying condition, many families see phenomenal improvements in severe aggressions and self-injurious behaviors. Especially in states where they have access to unhindered dosages.
After much discussion with Abram’s medical team, we decided to increase his daily CBD:THC and added in a third lunch-time dose to see if it would help Abram at school.
The results have been pretty astounding. His daily aggressions and self-injurious behaviors are slowly starting to go down. He is sleeping better. He is making more sounds and mimicking us. When we read books to him at night he is starting to copy the sounds of the animals that we read about.
Last year, I shared Abram’s story with the Medical Cannabidiol Advisory Board and why we need them to recommend the removal of the 3% THC cap. With the current law as-is, I will be unable to give Abram an effective dosage of cannabis oil to treat his numerous health issues.
By Christmas, our program will be up and running. Without changes to our current law - nearly all of the patients who have approved conditions will not be able to get products to effectively treat their conditions, including my son.
We need legislative action NOW - not next year. To make families like mine wait another year is unjust and cruel. I’ve already been fighting for access more than half of my son’s life already. Please help us.
Thank you for listening to our story.
Last March, Abram had the opportunity of a lifetime to be gifted an adaptive trike through the Variety Club of Iowa. His wonderful Occupational Therapist nominated for him to receive a bike and it is the one physical activity that he can do without fear. Abram has hypotonia, an abnormal gait and abnormalities in his brain that affect his vision in a manner in which he has a hard time with different terrains, stairs and other situations other than walking on flat concrete/flooring.
Riding a bike gives him a freedom he doesn't know in other aspects of his life. His face lights up. His little feet go as fast as possible and he flies! On an adaptive trike, he is able to just be a little boy with the wind in his face and the wonderful feeling of just speeding down a hill pedaling as fast as he possibly can. He doesn't have to worry about what his feet are doing because they are strapped in. He doesn't have to try hard to keep his hands on two separate handles as he has an adapted steering wheel on his trike as well. When he's on his bike - it is the only time in his life where is truly just free to be a little boy. It is the best thing to watch and something he worked SO HARD on to be able to do.
After participating in last year's Variety Telethon, my husband took it upon himself to start an employee giving program at his place of employment and last fall we were able to gift another little boy with a similar chromosome disorder his very own adaptive trike as well. It was the best feeling to see my husband do something so wonderful for another family and to get his employer involved in such a wonderful local charity that not only gifts adaptive trikes to special needs kids but they also provide funding for vans to transport children to doctors appointments and therapies, they work with Iowa communities to prove all-inclusive playgrounds, they help provide equipment and building expansions to much-needed therapy centers in Iowa and they help families who are struggling with the expenses of having medically complex children. Being able to participate in a tiny part of what they do makes me incredibly proud and happy.
In the fall, we were asked to participate in their new ad campaign. In all honesty, Abram had a hard time with the photoshoot and became overwhelmed, very agitated and cried so we were worried that they wouldn't be able to use his photos at all.
Imagine my shock when a friend wrote to me one day and informed me that they saw my son on a billboard in the city. I was so excited my friend Deb and I had to drive down just to see it in person. Seeing my son on a trike on a billboard made me beam with so much pride! He's worked so hard to be able to even ride a trike, especially when an orthopedic surgeon told us when he was an infant that he may never walk due to the nerve damage he received during his traumatic birth. I was beaming with pride and I was SO excited.
It turns out, he is on multiple billboards across the city and is in several different ads as well. We've driven around just to go and see them. There's just something so amazing about seeing him glowing in the night on an electronic billboard - it is literally a giant glowing example that NO doctor can set limits on what your child can or can not do. The only person that will dictate where Abe will go in life and what he will do is Abe. We are just here for the ride.
Abe - You are the light of my life and I am so proud of you. You work so hard to achieve your goals and no matter how difficult the road is - you do it with a smile on your face.
If you are interested in learning more about the Variety Club, please visit their website: varietyiowa.com/learnmore!
In honor of yesterday's "World Rare Disease Day" I wanted to share a little bit about the connections we've been able to make since Abram was first diagnosed with UBE2A Deficiency Syndrome.
It's been a little over 2 years since we got the diagnosis of UBE2A. Abram's case was the first that the University of Iowa, the University of Chicago and Mayo Clinic had ever seen! I was relieved to finally have an answer and immediately tried finding other families through Abe's blog and lots of digging!
Now, we know TEN other families from around the globe. I cannot tell you how amazing it is to have a group of moms and dads who can help answer questions and offer guidance. When doctors and geneticists admit that they are "learning from Abram" it is very important and special that we have these other families to rely on for medical information as they have or are currently already living it.
These phenomenal moms and dads have helped us understand certain parts of Abram's condition and have alerted us to things that our doctors didn't even know to look out for! When it comes to rare genetic disorders, how lucky are we to have the power of the internet to connect us all?
A extra special "thank you" to Tracey Stedman Harris who lost her sweet boy Nathan and continues to help guide families like ours! You can read Nathan's story on the UBE2A Brothers.
Here are some of their sweet faces and I'm sure you'll agree that all of our boys share that amazing award winning grin! <3<3
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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