Hey Everyone! We hope you had a safe holiday weekend. It was wonderful for us as Abram didn't have therapy or doctor's appointments for the first time in years. It was wonderful! We didn't do much but cook delicious food, spent time with our family and did a lot of swinging and playing with firetrucks.
He is officially over the 150 days seizure free mark and doing well in all of his therapies. His goals with his Speech Language Pathologist have totally been revised, we are learning new pressure point techniques with his Occupational Therapist and his Feeding Therapist is getting ready for him to work with and try an entirely different food group. We just finished up with "red" food. I'm curious to see what will be next?!
Epilepsy Awareness Month is officially over today but it came to a bitter-sweet end as a little article I wrote got published in the Cedar Rapids Gazette. You can read the full article, here.
We don't have much else to report because the last week has been a fantastic reprieve away from the reality of therapies and appointments and a lot of time driving back and forth to all of it. The weather is starting to turn which always makes winter driving more difficult but the outcome is so worth it. We even interviewed with ChildServe today (where Abram gets the majority of his therapies) and they will be doing a story on Abram and his success with walking! One year ago, Abram wasn't independent at all and now he is practically running.
Time flies. Life is Good. Enjoy your December!!!!
My opinion piece got published in the Cedar Rapids Gazette! You can read it online here.
My son Abram has been struggling from the start. He came into this world via an emergency C-section and then suffered meconium aspiration, respiratory distress, and jaundice which culminated in an unexpected stay in the neonatal intensive care unit.
In June 2013, just before his first birthday, we learned that Abram has a cystic lesion in the deepest part of the brain. He also suffers from hypotonic (decreased muscle tone due to an underlying disease/disorder), global developmental delays, sensory processing disorder, and in October 2014, he was diagnosed with a Generalized Seizure Disorder and Epilepsy. Most recently, we learned he has Focal Cortical Dysplasia (a congenital abnormality of brain development and common cause of intractable epilepsy) as well as Mesial Temporal Sclerosis. Both of these may be the fundamental causes of both his developmental delays and his seizures.
All of these diagnoses severely limited Abram’s early childhood. We could not do many of the things that new parents look forward to doing with their family. We could not go out to eat because the lights and sounds were too much for him to handle. If a fork dropped across the room, Abram would writhe in pain, screaming and crying, and we would have to leave immediately. Even getting him to eat at home was a challenge, as certain food textures or smells would cause my son to react violently. Holidays and birthdays were also hard on him because the sounds of tearing paper off gifts and the noise alone were debilitating to him. There was nowhere I could take him to play, as parks and playgrounds were too overwhelming for him. The sudden temperature changes in a splash pad or a strong smell often triggered a seizure. As a stay-at-home mom, it was difficult not having a safe place for my son to play outside of the home with other children.
This past May, our neurologist told us about a medicine called Cannabidiol (CBD). CBD is a nonpsychoactive medical marijuana oil that has been used to treat pediatric seizure disorders. It took months for me to decide on trying it, despite the numerous times that it was brought up by our physician. I was nervous and scared. But in the end, I knew I had to try it for my son, after his prescribed drugs caused increased and worsening seizures, as well as other serious side effects, including my toddler harming himself.
After introducing CBD as part of Abram’s daily medicine regimen, his improvements have been remarkable. His sensory issues have improved dramatically. We can finally take him out to dinner, without worrying about excusing ourselves mid-meal. We can finally take him to the park, the beach, and the pool. In fact, after meeting a family in the park last month, he climbed up the slide just like our friend’s little boy had. I cried at the top of the slide because I got to see him be a daring, fearless boy for the first time.
Thanks to CBD, my son can have fun like a typical little boy. Not only is he having increased cognitive abilities, he has been free of physical seizures since June. This is not something we could have imagined a year ago. He is doing things now that many of our doctors told us he would never be able to do to. Abram is improving more and more each day and is surprising all of his therapists with his newfound abilities. I want all families to have the same opportunity I did. Watching Abram suffer for the first years of his life left me feeling powerless and hopeless, No parent should have to go through that.
Unfortunately, while CBD is legal in Iowa, it remains illegal federally, meaning that gaining access to certain strains that are developed in places like Colorado is illegal. Earlier this year, the CARERS Act was introduced in the Senate. This act would exclude CBD from the definition of marijuana. This is important because it would allow CBD to be transported across state lines. It would allow families like mine to get the treatment they need without going to extreme lengths or risking federal prosecution. CBD has none of the recreational uses that people associate with marijuana. It is a medicine, and it is about time that it gets treated as such.
Despite growing support for the CARERS Act, Sen. Chuck Grassley, who chairs the Senate Judiciary, refuses to hold a hearing or a vote on this important bill. On behalf of all the families who have suffered like mine, I urge him to reconsider and to give this important legislation the attention it deserves. Children like my son Abram have dealt with enough pain in their lives, and every day that Sen. Grassley waits just adds more. Thousands of young Iowans would benefit from this bill, and we need a senator who will stand with them.
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.
My little boy amazes me every single day. I love that when I look back at just a few weeks ago (let alone months ago), I can see all these incredible improvements. Many of which the "professionals" told us he may never be able to do. Abram has a serious knack for proving people wrong. We have Cannabis Oil to thank for much of it in addition to the hard work he puts in every single week at therapy with his Occupational, Feeding and Speech Therapists. We are lucky to have accumulated an amazing team of therapists and SCL/Respite providers who work with our family to give him the best life possible, as well. If you are reading this - Thank You.
When our Neurologist first told us about cannabidiol, it was in regards to how shocked he was at how well some of his other kids were doing. I remember him telling me specifically about one child who came in walking and talking when before they were unable to talk or willfully be examined. When I heard him say that cannabis helped a child gain the ability to talk on TOP of having the ability to gain control over his seizures - my heart got hopeful.
It took me months to decide on trying it, despite the numerous times that it was brought up. I was nervous. And scared. But if you know us or have read this Blog, you know how Abram has suffered. You know how many doctors have told us incorrect diagnoses including one Neurologist who told us he was "fine", an Orthopaedic Surgeon who told us he may never walk and a Pediatrician who missed absolutely everything about my son's health issues for the first 10 months of his life.
Before Cannabis Oil:
After Cannabis Oil:
He hasn't gained his words back (he had Mama, Papa and Cat before March), but he is making new sounds all the time and is working incredibly hard for his Speech Therapists. Seizures stole his words but they didn't steal his determination and his inane desire to prove everyone wrong and do all the things he sets his mind to.
It has officially been a year since Abram was officially diagnosed with Epilepsy. I had no idea what the next 365 days would bring us. But here we are! It only took five MRIs, five EEGs, four long hospital stays, four Neurologists, four Neurosurgeons, four world-reknown skull based surgeons, three Epileptologists, three VEEGs, three sleep medicine doctors, two Nephrologists, two Endocrinologists, two ENTs, two Genetic Counselors, two Pediatric Development Specialists, one Craniofacial Surgeon and one Ambulance Ride.
But today, I can say "My son is 127 days seizure free, today!" I realize that as he grows our need for stronger medicine will most likely rise - which is why I am fighting for changes in our laws.
If you live in Iowa and have been touched by our story, please write to our Legislators! I also encourage you to write to our US Congress by writing to your Senators and your Representatives! Help spread the positive message that Cannabis IS Medicine.
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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