This was Abram's smiling face after another Masgutova Neurosensorimotor Reflex Integration (MNRI Method) session today. He's been doing this for one hour, three days a week since August and this specific method has reaped some pretty phenomenal results for our little boy! I feel especially lucky that we have therapists trained in this approach, right here in Iowa. I have friends in major cities across this country (even Los Angeles) who don't have access to MNRI and here we sit, in the midwest with a method that is working its wonders on Abram.
The basic idea of it is that we as humans are all born with "primitive reflexes" but when children like Abram are born with traumatizing births and the medical gauntlet that follows, many of their body's reflexes are out-of-whack so their brain has a hard time telling their bodies what it should be doing in reaction to certain stimuli.
For Abram, he still struggles with things many people take for granted like being able to suck from a straw, blow bubbles, ride a trike, make sounds, move his tongue, step down from a mat to the floor, walk across different surfaces - you get the idea. The list could go on and on.
There is a parent manual that I have to read through to learn the different exercises which are in essence (at least to my untrained eye) a form of reflexology with pressure points, different stretches, etc on certain parts of the body. The first 12 weeks we concentrated on fine and gross motor and we just started another 12 week set concentrating more of speech and feeding.
Since we started this specific type of therapy, Abe has been able to drink from a straw, learned how to ride an adaptive trike (after months of trying a "normal" trike) and he can now ride so fast that I can barely keep up with him and he's beginning new sounds that are the essential sounds and building boards to speech itself. (He may still show everyone that UBE2A kiddos can TALK.)
We are also including Feeding Therapy along with these 12 weeks which is leading up to his tonsil and adenoid surgery in March. Abram has Sensory Processing Disorder so feeding and eating is a struggle every-single-day at every single meal. He has major issues touching wet/squishy foods so that is a major concern for me with said surgery coming up. I'm hoping that by March, he will be able to eat some pudding or applesauce without gagging/vomiting or screaming. These textures are big for him and it's a struggle but we have a great therapist now who gets him and who even got him to touch pudding by drawing an elevator in butterscotch pudding and had him touching and playing with it which is one HUGE first step!
Doing the MNRI focusing on feeding includes a lot of exercises on his neck, head and face - to which he protests and cries through most of. Yet again, he is a child who has constantly been poked and proded his entire life and with EEGs being a constant thing and having leads glued to his head multiple times a year since he was born - he's got quite a bit of PTSD of having anyone doing anything to his head. Which is precisely why he needs this therapy and exactly why he needs to be pushed to make it through a session. It's hard when he struggles but I know it's what is best for him and in the end he will be victorious.
He always gets to ride the elevator after his therapy sessions so it's always a good motivator to know that he gets to ride that thing before we leave and he knows that something cool is in his sights if he just pushes through. He's such a tough little dude.
The Musgatova Method is a pretty neat thing to watch and I have my "homework" to do at home practicing the exercises with him but it's incredible to try to read through the manual and understand how many reflexes our body is supposed to have an how many Abram has missing and/or aren't integrated properly. It's really quite fascinating! Abram didn't do a lot of things as a baby (like chewing/sucking) and he was missing his moro-reflex forever so when he fell his brain never told him "put your arms out to catch yourself". These are all things he needs to learn now and by him not chewing/sucking on things as an infant - it has majorly impacting his eating and feeding NOW.
I highly encourage anyone who has a little person in their life who needs help and has hit a plateau with therapy to try this. Here's some info taken from the MNRI website that might blow your mind.
A reflex, in its simplest definition, is a conscious or unconscious behavior (output) occurring in response to a change (input).Scientific investigation continues to reveal the subtle complexities of reflexes and how hugely important they are to our ability to exist. It is not surprising, therefore, to find references to reflex action as far back as the pre-Socratic Greek philosopher, Anaxagorus (500 B.C.) who spoke of a self-organizing nature of the mind’s activity and Plato (400 B.C.) who proposed that sense experiences act to guide assertions about the outside world. The Greek anatomist Herophilus (300 B.C.) not only recognized the brain as the center of the nervous system, designating it as the center of thought, but went on to make the first known contribution to neurophysiology by distinguishing between sensory and motor pathways (Thomas Knierim, Mind and Consciousness, thebigview.com). Centuries would pass and many more ideas would be postulated, explored, and debated until scientists of the “modern era,” armed with the scientific method, would reveal the actual dynamics of the reflex.
Abram and I had the honor of being on the front page of the Des Moines Register last Thursday. It's been a pretty surreal ride, ever since. I have had over a handful of other Iowans reach out looking for help for their loved ones and I hope that I can be of some help to them - even if it just means that I can be a sympathetic ear. The best part of our journey so far is the people we have met. It's so great being part of such a wonderful community but it's even better being able to share our story and to help as many people as we can along the way.
You can read the entire article by clicking here but I will also paste it below incase the link ever stops working. Many thanks to Courtney Crowder of the Des Moines Register for taking such a great amount of time learning Abe's story and researching every bit of it to make sure you got your facts right! You are amazing! Also, big thanks to Zach Boyden-Holmes for the wonderful photos. Abe really loved showing off for you guys at Therapy.
The article reads as this:
"When Erin Miller dreamed of motherhood, she never imagined her life would be organized around therapy appointments and medical research consultations.She didn’t think it would mean racking up debt traveling from specialist to specialist or memorizing her 4-year-old son Abram’s list of medical conditions, including a rare disorder called UBE2A Deficiency Syndrome, which can cause seizures, intellectual disability, motor delays, and defects in the brain, heart or kidneys.
And Miller, who is one of The Des Moines Register's People to Watch in 2017, certainly never imagined she would have to lobby legislators, doctors and hospitals for the medicine she says has kept her son seizure-free for more than 500 days and given him some semblance of normalcy: medical cannabis.
“Cannabis brought my son back to me,” said Miller, who spent years struggling to figure out what exactly was wrong with Abram. “Just two years ago, he was having seizures and all the motor skills he had gained disappeared. Now, after being on cannabis for a year and a half, he’s walking, running, giving high-fives and hugs, and being a little boy."
For the past few years, Iowa legislators have tangled over what to do about medical cannabis. With the current medical marijuana law set to expire this summer, Miller and other advocates plan to advocate for a more comprehensive bill.
Rep. Clel Baudler, R-Greenfield, and Sen. Joe Bolkcom, D-Iowa City, have said they plan to file medical marijuana bills when the legislative session begins in January. Baudler has said he wants to limit products to low-THC oil made from the marijuana plant, commonly called cannabidoil or CBD, while Bolkcom wants patients with a wide variety of afflictions to have access to the entire cannabis plant and a fuller range of products.
The current bill, passed in 2014, allows only patients with intractable epilepsy to possess CBD with less than 3 percent THC, the chemical associated with marijuana’s psychoactive properties. That legislation gave Abram access to the medicine he uses, but a separate statute deems manufacturing or distributing marijuana illegal in Iowa, and federal regulations prohibit transporting the plant across state lines. Effectively, Miller is breaking the law every time she goes to Colorado to acquire her son’s medicine.
Miller says she found pharmaceuticals failing her son, with nowhere left to turn. She is not a criminal, she says, just a parent who wants her son to be able to access a stronger dose of CBD or a different part of the plant if he needs it. And she wants her friends with cancer, ALS (also known as Lou Gehrig's disease) and chronic pain to be able to obtain the type of product they need, whether that be oil with a higher THC content or other forms of marijuana.
“I’ve met so many people totally out of medical options that deserve this, too,” she said.
While nationally the medical community disagrees over what to do about medical marijuana, 78 percent of Iowans support allowing people to use cannabis as medicine, more than ever before, according to a Des Moines Register/Mediacom Iowa Poll conducted in February 2016. With high-profile leaders, including Bob Vander Plaats, president of evangelical Christian organization The Family Leader, and a cadre of business executives in support of legislative action, Miller is hopeful lawmakers will get a bill passed.
If they don’t, it might mean moving her family to Colorado to ensure Abram can legally access medical marijuana.
“Abram is a prime example that legislators did good when they put that bill into effect in 2014,” Miller said. “Now, they have a chance to help others in the same way.”
Miller had a totally normal pregnancy, she said. But that’s where “normal” stopped.
Abram got stuck during birth and Miller had an emergency cesarean section. Doctors then discovered she lacked amniotic fluid. Amid Abram’s stay at the neonatal intensive care unit, his nail beds and lips turned purple and his nasal passages had to be suctioned. He hadn’t been receiving the correct amount of oxygen for a few days.
When Abram finally went home, he never stopped screaming and crying, and he never slept, Miller said.
“It was almost like he was ... in pain, writhing in pain and screaming,” she added.
Miller knew something was very wrong, she said, but no one would listen.
“Even my closest friends were like, ‘You are just not happy at home with your baby,’ or, ‘Maybe you have postpartum depression,'" she said.
Miller scheduled an appointment with a neurologist and discovered that Abram had been having almost non-stop seizures due to brain abnormalities.
Abram's doctors decided to start him on an anti-epileptic drug and, for the first month, everything seemed OK, Miller said.
But then worse seizures came. Her son’s doctors prescribed more of the anti-epileptic drug, she said. Abram had just begun to walk at 2 and a half years old, but he started collapsing and not being able to take steps or crawl straight. He regressed. Miller said the doctors’ only response was more anti-epileptic drugs.
Unsure what to do, Abram’s neurologist told the family they needed to contact a specialist, Miller said, and added that they should think about trying cannabis.
Miller acquired a bottle of CBD oil in June 2015 and almost immediately noticed a change in her boy.
“He was able to make eye contact and smile,” she said. “His fine motor skills began to catch up. … he went from literally not using his fingers to being able to do puzzles.”
Nationally, 28 states, Guam and D.C. have legalized comprehensive medical marijuana, while another 16 states allow for some form of CBD or low-THC products.
But even as more states choose legalization, the medical community lacks consensus on medical marijuana. A recent poll in the New England Journal of Medicine found that 76 percent of experts backed medical marijuana use and the American Nurses Association “has supported providing safe access to therapeutic marijuana and related cannabinoids for over 20 years.”
On the other hand, the American Medical Association will not take a position on the use of medical marijuana until more research is completed. And the Federal Drug Administration has not approved marijuana for any use.
One of the biggest arguments Miller hears against expanding medical marijuana access in Iowa is it’s a slippery slope to allowing recreational marijuana. But Miller stressed that she’s only advocating for “safe and organically grown and lab-tested” medical cannabis.
Over the years, Miller has tried to let go of the anger toward those who she felt weren’t listening to her. Even though being ignored was “traumatizing,” she said, it turned out Abram had an extremely rare condition and she now realizes they just didn’t know the best course of treatment.
Miller is the mama bear she never knew she could be, fighting for her cub and the medicine she believes he needs.
And she claims a little victory every time she sees that bright yellow note in Abram's medical file that says, "Listen to mom."
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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