This is Us
Extended Version
We started our journey when my first son, William, was born. Despite a perfectly healthy pregnancy, William’s birth didn’t go as planned. His mom labored and labored and eventually ended up pushing for 4 hours straight before he was born.
William went without oxygen for several hours. He was delivered using forceps and had a fractured skull and bleeds on his brain. His initial Apgar score (grading his heart rate, breathing, muscle tone, reflexes and color) was 0 out of a possible 10. He essentially had no signs of life. Amazingly, William was revived by the emergency response team. He spent his first weeks recovering in the Neonatal Intensive Care Unit.
William was eventually stable enough to go home. But, he struggled to do simple things like eat and sleep. We were fortunate that William’s mom was an experienced ICU nurse and knew what to look for medically and developmentally. And, she knew how to navigate the health care system to access necessary services.
Even with that advantage, William’s development was a struggle. In order to get him home from the hospital, we had to put in a NG Tube (a tube that goes up through the nose and down into the stomach) so that we could feed him using a pump. That could only stay in place for so long before a more permanent solution, a G-Tube (straight into the stomach from the skin) was surgically placed.
Problem solved, right? Oh no! We would pump food into his stomach, and William would throw it up. We worked with a pediatric GI (gastrointestinal) specialist, tried various formulas, ran tests, and tried methods to make the feeding easier. Nothing worked. William developed a serious aversion to food. Not only would he refuse anything by mouth, he would cry if you even brought food or food related items near him.
If we could keep the formula fed via the G Tube in him for 15 minutes before he vomited, that was considered a success, because it was long enough for him to absorb some of the calories. Nevertheless, William was not getting what he needed to grow and his height and weight dwindled from ideal numbers at birth (50-75th percentiles) to between 1st and 3rd percentiles by the time he was 1 year old.
William’s development, though delayed, was progressing. He eventually learned to walk, and was improving his gross and fine motor skills. He even began showing some signs that he might start talking. We enrolled him in a very impressive early intervention program that mimicked pre-school, but focussed on trying to help him catch up developmentally to his peers.
When he was 5, he had his first witnessed seizure. It lasted for over 40 minutes before it stopped. We were completely unprepared for it. William began having frequent seizures, as many as 25-50 per week.
They varied in how they presented. Some would present as facial ticks or blank stares. Others would make him suddenly drop, losing all motor control or make his entire body convulse. A few months later, he suddenly lost many of the skills he worked so hard to acquire and he started having pretty violent behaviors. That culminated in an emergency trip to see our neurologist.
After extensive testing, he was diagnosed with a very rare seizure disorder, related to his brain injury. The disorder caused him to essentially seize all night. Within minutes of William going to sleep, his brain (not his body, also called sub-clinical seizures) would seize until he woke.
These seizures damaged his neural pathways and eroded his development, making skills that he had worked years to attain disappear in minutes. After bad nights, William would lose the ability to walk, or make any noises, or use his arms or hands, or chew food. Sometimes these abilities could be re-trained in a few hours, sometimes the skills disappeared for days, weeks or months. Because we couldn’t physically see how bad the seizures were, we’d never know what we’d be facing when he woke up.
Some skills that he was just beginning to develop, like speech, disappeared and have not reemerged. The seizures have also made it more difficult to regulate his emotions and after a few months of crazy behavior, we learned from his pediatric seizure specialist that the night seizures were known for causing very significant, very difficult behavioral problems.
We spent two years trying to chase a remission from the night seizures, and dealing with the horrible side effects of the anti-seizure medications. We saw specialists all over the country, exhausted every known treatment for the night seizures, and we were told to stop. They weren’t going away. It was the worst possible prognosis for the disease.
William had his hearing checked 3 times before he was 3. But, somehow he developed neural hearing loss when he was 9. At the same time, he was diagnosed with a muscle disorder relating to his brain disorder called dystonia. It causes painful cramping/tightening and/or torsion of the muscles. Usually, the disease progression is slow, but within 3 months, it went from just affecting his left leg to affecting his left arm, trunk, face, and neck muscles.
William has had a pretty tough race to run thus far, but fortunately, his internal tenacity is something of legend. Being his parent has been both the most marvelous and maddening journey. That incredible tenacity is a double edged sword that can both enable him to fight seemingly unconquerable challenges or psychologically dismantle his father. My biggest battle is to help him focus that super power for his benefit. At times he has done so with remarkable success.
Battle one was food. William was 3 1/2. We had tried everything that we or our team of therapists thought of. He was legitimately sick, malnourished. It was Thanksgiving, my and every fat guys favorite holiday. I really wanted to enjoy it. Food, to me, was love.
But food had become ugly, a form of torture. I knew he needed it to survive and believed that his relationship with food could change but he had to know this was important. So, I put my little 3 1/2 year old in the high chair and put a big plate full of Thanksgiving goodness down in front of him. He looked at me in disbelief. We had never put a full plate in front of him, much less a Thanksgiving spread that his chunky, loving father could respect. I said, “You need food to live. And whether you eat it or not, I am going to do this with you three times a day, every freaking day until you or I am dead. Got it?”
I remember this as the first time my son looked at me like I was a lunatic. Then, he took a bite. He finished the whole spread. He never used the G-tube again. Not once. 6 months later, with doctor’s permission, we removed the G-tube at a celebration we had at the park (I know, weird huh).
William, still struggled to eat enough to put on weight so we supplemented his diet heavily with high calorie drinks. This did nothing. He could eat the equivalent of me eating a 10,000 calorie a day diet and not gain weight.
We began focussing on the nutrition content. Most of the drinks he was prescribed were high calorie but had little nutritional content. We found drinks that were high in calories and equally as rigorous about their nutrient content and balance. For the first time in his little life he began to grow and grow well.
Eating was still a daily battle though, he struggled with obvious stomach discomfort and staying regular. My brother suggested we look into a doctor who had some unique perspectives on food, Dr. Steven Gundry. Dr Gundry was a heart surgeon who had begun focussing on food rather than surgery to heal patients with some success. We spent weeks verifying the information he provided, tracing his philosophy to real medical studies that informed his unique ideas.
The diet he suggested was an unwelcome challenge to an already very complicated life. Many of the staples of our diet would need to be avoided. No potatoes, corn, soy, rice, grains, or tomatoes, etc. But, the evidence was there, we had done our research and it was worth a try.
Within 3 months, William was eating like we had never seen. His mood had dramatically improved. He seemed to be in less pain and have a more typical hunger drive and fondness for food. His regularity improved and he even began to focus better on non-preferred tasks like school work, therapy or chores. William currently out eats the Thanksgiving loving, 265 lb side of beef that he calls dad on a nightly basis. It is simultaneously horrifying and miraculous, but I’ll take it.
Battle two, which is still an active engagement, was sleep. William has always struggled to sleep. His brain appears to be exceptionally sensitive to stimuli that affect sleep. And, as any parent of a kid who struggles to sleep can tell you, if he struggles to sleep, YOU struggle to sleep. His issues were so severe that there were literal years without a full night sleep.
This began to affect the mental health and physical wellbeing of both his mom and I. There is a future video on the way, regarding this topic, and how these complicated issues were addressed. There is far too much information to address here, but over several years this issue has vastly improved and we continue to make regular progress. I can’t wait to share it.
Battle three is seizures. Seizures just suck. There is no way around it. I hate seizures. After years of struggles and without anything other than the condition worsening, we came to believe that the seizure medications were causing more seizures than they stopped. This is not a recommendation to stop, start, or adjust any treatment. All of our decisions were made in concert with appropriate medical professionals after careful research and consideration and we recommend you do the same.
Although, we knew this could potentially worsen his condition, we felt that this was the best course of action and it helped in numerous ways. He went several years without any treatment for his seizures other than rescue medications.
Eventually, we tried a Vagal Nerve Stimulator or VNS which has been the single greatest aid to our battle with seizures. After just over a year, his seizure activity is 95% reduced and it should continue to improve over time.
Battle four, which may be the most critical day to day battle, is emotional regulation. Whether it is due to his neurologic conditions, lack of ability to communicate, or seizures, or something else, William really struggles to manage his mood. He will have unpredictable (and predictable) outbursts which can turn manic, depressive, and aggressive.
This has been such an extreme, uphill battle. We tried medications, behavioral therapy, and still see a psychiatrist with William regularly, but nothing seemed to help. We ended up in the ER with 3 adults restraining him at one point because he was so aggressive.
Eventually, our physical, occupational, and speech therapists discharged us because he became so uncooperative and aggressive. But, we knew we were in trouble when our behavioral therapist bailed and William’s psychiatrist started trying to find on inpatient facility that could handle his behavioral and medical problems, and give us some respite, training, get him regulated, and get him back home safely.
But, it never happened. We couldn’t find one. There was no help, it seemed, anywhere. So, we gutted it out ourselves. We worked on his diet, started making him exercise regularly, gave him every opportunity we could to regulate his sensory needs, worked on everyone’s sleep, and especially worked on everyone’s ability to manage stress, anxiety, and emotions.
Through begging our case worker, we found an amazing behavioral therapist that could handle him, and she became our instructor. And, this is huge, we did our very, very best to implement every little thing she suggested. It was difficult and embarrassing at times, feeling like we had this constant observer to all our parenting missteps and fouls. But, she was so gentle, encouraging, and thoughtful. To this day, when things start to go side ways, I stop, take a deep breath, and think," “What would Britney do?”