Health in Question
This narrative was initially written to share with coworkers of mine who had donated Paid Time Off hours to me because of my extensive time away from work. This was written primarily to highlight the AMAZING hospital who diagnosed and cured my son. The same hospital I work for. It shares only the medical, clinical story. Obviously, there is so much more between the lines.
The initial diagnosis was in January of 2015: Major Depressive Disorder, Severe with Psychotic Features, Generalized Anxiety Disorder, and Panic Disorder. Wanting a second opinion, I turned to the school based clinician who diagnosed him with Generalized Anxiety, Depression, and ADHD.
He was 10.
We spent the next year seeking treatment, medication, and therapy, but nothing really seemed to help and his symptoms worsened.
In August of 2015, Nicholas started to feel pain in his legs. He was suffering from severe insomnia and the panic attacks were more frequent.
By January of 2016, the pain was so severe that Nicholas was unable to walk. He began using a wheel chair at home and he wasn’t able to attend school.
Our first visit to Barbara Bush Children’s Hospital was in January of 2016. At the time, the diagnosis was still anxiety, possible conversion disorder.
By February of 2016, Nicholas’ symptoms had only worsened. He had now lost over 20 pounds. We went to Boston Children’s Hospital hoping for more answers. We were there for ten days. The primary resident on the case told us that this was chronic pain and with chronic pain, sometimes there is no explanation. They ran numerous tests, but agreed that since they could not find anything, it must be caused by anxiety. They chose to handle the high blood pressure and tachycardia with medication. They sent me home with a kid who was on Klonipin, Gabepenton, Clonidine, Ibuprophen and Aceteminaphin. He was barely able to function and at one point asked me if this is what it felt like to be high.
He had just turned 12.
By mid May, he was no longer to keep anything down. His pediatrician told us to stop (not wean, but stop) all medications, even after I questioned it.
By the time we came back to Barbara Bush Children’s Hospital on May 13, Nicholas had not been able to keep anything down for four days. His blood pressure was high and he was tachycardic. His weight loss was over 30 lbs.
I was told at this time that if they could not get things turned around he would not make it.
The doctors at BBCH brought in specialists throughout the weekend, and he was improving by Sunday. It was that Sunday that we saw the double rainbow outside his window.
After almost four weeks at Barbara Bush, Nicholas was diagnosed with an extremely rare type of auto immune disorder called Auto Antibodies to Voltage Gated Potassium Channels. Essentially, he had developed antibodies that were attacking his cells. There are very few cases reported, so a medical journal article will be written about my son. Once the cause was identified, he began treatment and was released within a week.
Over those 18 months, we received so much medical care. We had 3 hospital stays, 7 ED visits, countless specialists and doctors.
All offering no hope.
I cannot tell you how many times I was told to go home and seek more intensive therapy.
Without the persistence of all of the BBCH hospitalists, we would not be where we are today. Doctors made it VERY CLEAR that we were not going home without answers. Anxiety was a symptom – not the final diagnosis. Doctors didn’t try to pretend they knew what this was, but they made it clear they were going to work with us to find out. They spared no efforts. They collaborated with other departments within MMC, other clinics across the country, and brought in as many minds as possible. The test that provided the answers we were looking for was ordered by a neurologist who visited Nicholas at 5:00 PM on a Friday afternoon.
Nurses and CNAs gave my son the care that no other hospital had. His pain was not overlooked. His comfort and care was first on everyone’s minds. These men and women worked long shifts and provided a level of care that we had not received prior.