BC Teacher – if my son didn’t have MIS-C then what caused this life and death illness?

     

    This story is published as told by a teacher whose son fell desperately ill during July. She suspects it was MIS-C. The boy was in ICU at BC Children’s Hospital. The photos were taken by mom.

    As I see stories in the news about suspected MIS-C in BC, I have finally decided to share my family’s story to personalize the experience.

    My son is a fit, strong, 16-year-old who loves mountain biking and working out. He has no diagnosed immune compromised issues. He was incredibly strong and could do the lifting of two men if you needed a hand hauling anything; that is until late March when he had pneumonia for 3 weeks and lost 25 pounds.

    He had actually started his school strong man competition but couldn’t finish the week as that was when he got pneumonia.

    Little did we know that after recovering from pneumonia, he’d soon be facing a more traumatic health crisis.

    When our summer misadventure started with a sore neck, we had no idea we’d be fighting for his life in a matter of days. Here is our journey with suspected MIS-C.

    July 5 – 7 – He started complaining about a sore neck. As he’d done some heavy landscaping work the day prior, we thought perhaps he’d strained something. For the next few days, he laid around to heal. However, the neck started to swell in lymph area on one side on night of July 7.

    July 8 – Shortly after waking, passed out briefly. Thankfully, he safely lowered himself to the floor. We were able to book a virtual doctor appointment for later that day as thoughts of meningitis creeped into our minds.

    Blood tests were ordered for the next day but we were told to take him to the hospital for an in-person assessment if any other symptoms developed.

     Shortly after our appointment, a rash started to appear on his hands and arms so off we went to hospital.

    Although he had a fever, Covid-19 was not likely, we thought, as we’d been strict about following health guidelines. However, there was that one trip to a couple of stores the week before (masked, of course, but not everyone around was masked).

       

    At the hospital, a number of tests were administered including Covid-19,which was negative.

    Through blood and urine tests, they ruled out a few other things including meningitis but the doctor was concerned enough to give IV antibiotics and asked us to come back to the pediatric unit the next day for an appointment.

    Worry was setting in.

     July 9- Our pediatric appointment was surprising. The rash had begun to spread but we were hopeful that it was “just” a nasty virus or infection. He now had very sore and swollen lymph nodes on his neck, fever, rash all over but especially arms, fatigue, no appetite and doctors seemed stumped as they struggled to diagnose.

    Some strange numbers on various tests were raising concern. He was put on IV fluids and antibiotics as some kind of infection was suspected. There were many possibilities pondered but none that could explain his combination of symptoms. We were not going home  – that was certain. 

    July 10 – Overnight, the rash spread, more blood tests were ordered to help inform a course of action – would he become outpatient and come back each day for IV antibiotics and further tests or would he be moved to a hospital that had more intensive pediatric services?

    He continued to stump doctors. Many hands were now on deck and more professionals were involved in his case.

    His inflammatory markers were increasing, his hemoglobin decreasing, his platelets were lowering, and he was showing a bit of blood in his urine.

    While they thought this all may be part of an infectious process, they couldn’t pinpoint the type; and new test results would take 2-7 days.

    While his “numbers” were not yet serious, there was apparently a risk of internal bleeding. Was it Coxsackievirus? Was it HSP? Did he have ‘Disseminated Intravascular Coagulation?’

    What did all of these terrifying words even mean? Two days ago, he only had a sore neck! Nothing being explored at this point could explain his combination of symptoms.

    That night, after increasingly troubling number of changes in blood and urine tests, as well as increasing blood in the urine, was dosed up on even more IV antibiotics and then sent by ambulance to BC Children’s Hospital.

    The attending paramedic was a great match for my son, with 9 different black belts, he was a great conversationalist. I drove my vehicle. While we tried to keep up good spirits, we were desperately hoping for answers.

     July 11 – The doctors were increasingly concerned and a sense of urgency was now prevailing as his condition was clearly deteriorating.

    Was there a severe infection possibly in his neck, that was now impacting multiple organs?

    If so, why had it not responded to the massive amounts of antibiotics? He had now developed low blood pressure, low oxygen level, low hemoglobins, blood in urine showing kidney damage, and increasing rash.

    We were exhausted. We got into our beautiful room at 4:30 am after lots of poking and prodding downstairs.

    He had been poked and prodded since about 8 am with very small breaks and was finally able to rest for about 45 minutes.

     The doctors were acting swiftly to gain further informatIon via an MRI on his neck, more IV antibiotics (three types), IV fluids to keep him hydrated and help keep his blood pressure up, more blood work, and they took two more nose swabs, checking for Covid-19 sgsun and other super bugs. (The horrible COVID swab – he has now had four of them.)

     Possible diagnoses on the table were now MIS-C – Multisystem Inflammatory Syndrome in Children associated with COVID-19 or he had a severe viral or bacterial infection.

    On a positive note, our isolation room was amazing! We had a fridge, real bath/shower, a comfortable day bed for one parent, and a stunning view of the north shore mountains!

    I was fortunate to have family 10 minutes away and Vancouver friends offering help if I needed anything and an “in-house” friend with her son offering to get me things as I was to stay away from food service areas, etc.

    I was allowed to walk to warm blanket location. It was really hard on his sister to not be able to see him due to Covid-19 restrictions. I was becoming quite used to wearing a mask 24/7 (even though at first I found it to create a feeling of panic – this disappeared after the first 30 minutes or so.)

    July 11- He had a CT Scan and Echocardiogram (which I found absolutely fascinating). His blood pressure was increasingly low and he needed oxygen as his levels were not high enough (although breathing was not laboured). CRP (inflammatory markers in urine) had risen from 87 a couple of days ago to close to 200 (whereas the norm is below 3, whatever that means).  

    The antibiotics were causing digestive challenges.  The poor guy had to have his fluid intake measured and restricted, as well as all of his “output” weighed and measured. Talk about leaving your dignity at the door!

    He continued to get fluids to keep his blood pressure up, as well as oxygen to keep his oxygen levels up. His urine was dark brown.

     The possibilities were slowly being narrowed down. We met with a team including rheumatology specialist, infectious disease specialists, kidney specialist, and pediatrics. The possibilities that caused his condition werr narrowed down to about 5 of them – scary but rarely life threatening.

    A few he would simply recover from and a couple may have longer term complications that could be remedied with long term medications.

    Tonight, he’d start on Intravenous immunoglobulin (IVIG) transfusion which would help with the three most likely possible diagnoses.

    This involved a review of risks – all extremely rare – and a meeting with ICU staff in case any issues arose with the transfusion – highly unlikely but they were “ready for him” just in case.

    One of the diagnose at this point was COVID-related; although he did not presently have Covid we were waiting for results that would tell us if he had Covid as part of his pneumonia in March or since.

    However, the antibody test is considered highly unreliable – with a 34-50% false negative result (we were told) so a negative would not take this possible diagnosis off the table but a positive result would move it from suspected MIS-C to confirmed MIS-C.

    This diagnosis was one of the three possibilities left on the table (along with Toxic Shock – but no found infection source and Atypical Kawasaki – usually found in youth under age 5 – not 16).

     What is Multisystem Inflammatory Syndrome in Children (MIS-C)?

    It is associated with COVID-19 and something a small number of youth are experiencing after recovery.

    I could tell the staff here were all really concerned about Covid and the after-effects, many of which are new and under study. Although many people have “recovered”, more and more new post-Covid problems have become and continue to become evident.

     July 12 – Last night was the scariest night of my life! On top of his organs showing major issues (kidney, especially but also liver, fluid around heart, and in lungs) major anaphylaxis reaction to IVIG treatment resulted in him literally fighting for his life.

    His convulsions were terrifying and the look in his eyes will haunt me for some time.

    You know in the movies when a team rushes a patient down the hall to open elevators, the bed surrounded by professionals staring at monitors and all working in sync and intensity – that was what happened with my son!

    He had one of the extremely rare reactions we’d been warned about. He needed the meds that only ICU could offer and he needed them fast! Of course, I was in the hall during this intense period, taken upstairs to our room to get everything for a move to ICU as a distraction, and after an unknown time, allowed back in. I have no idea if it was 45 minutes, an hour, or more.

    Thankfully, they were able to stabilize him. He was hooked up to so many machines. His arms and feet all had multiple sensors!

    Teacher’s son in hospital during life and death struggle. Pix by mom.

    Imagine, though, a few hours later, being told that the treatment that almost killed your son needed to resume to save him?

    Under the collaboration of cardiology, rheumatology, and infectious disease specialists, we were told they should try again but follow a slightly different protocol to avoid the anaphylactic response.

     We asked our close family and friends to keep us in their prayers or thoughts or send positive energy out – we needed our kiddo to kick whatever was causing this systemic inflammation in the butt.

    Still, only my husband or I were allowed to see him or be with him and only one of us at any time. His sister had not seen him since July 8th.

    By the evening of July 12, his body accepted the treatment! What a turn-around.

    The IVIG take two made a huge difference and quickly! He began to perk up, was gaming in a chair, and even ate soup… he even laughed a few times. Last night he was fighting for his life.

    Finally, things were turning around, and that fact that he responded so well to IVIG points to increased likelihood that an inflammatory disease (MIS-C/Kawasaki) rather than an infection was the problem.

    July 13 – Progress! My son was finally making a recovery. He left ICU to a regular ward this morning and we were told he may be on the road home in a few days if this progress continued. He still had a lot of monitoring and a ton of vials of blood taken every few hours!

     July 14 – He continued to improve. His kidney seemed to be healing, his oxygen started heading in the right direction, his inflammatory markers were decreasing. If this continued, we were told we should be home between Thursday and Monday.

    He even had energy to dominate in a couple of card games until he fell asleep with his head on the table.

    Everything was now stable and we were through the danger zone.  We still didn’t know for sure if this is Kawasaki disease, MIS-C, or Toxic Shock.

    July 14 – This day was a relatively good day overall. While we were told he had an acute kidney injury, we were assured that it should heal over a reasonably short time. We would need to follow up in a month or two to see if the fluid problem around his heart resolved. Until then, he would need to stay on a high dosage aspirin. His liver seemed better.  As his kidneys improve, we were told, his oxygen levels would be more consistent as they dipped slightly low a few times today – all stages of healing,

     We were sent home finally.

    His discharge sheet indicated this diagnosis: MIS-C vs. Atypical Kawasaki vs. Toxic Shock as they were not able to disprove or unquestionably prove any of them, but MIS-C sounded like the most likely of the three. We will never know for sure.

     Editors note: BC PHO Dr. Bonnie Henry has said we’ve 8 cases of suspected MIS-C in children but these are not proven. The mean age in those 8 cases is 4. So it’s highly unlikely that this boys name is on government database.

    However, mystery still surrounds MIS-C and knowledge is not perfected as is the case with the parent disease Covid-19. Other jurisdictions in Canada have reported MIS-C name in May as a distinct illness related to Covid-19. Earlier cases in the pandemic were called Kawasaki and these two resemble each other significantly.

    The US CDC says a child who is in close proximity to someone with Covid-19 can develop MIS-C.

    US CDC – “MIS-C is a new syndrome, and many questions remain about why some children develop it after a COVID-19 illness or contact with someone with COVID-19, while others do not.”

    “CDC has received reports of 792 confirmed cases of MIS-C and 16 deaths in 42 states, New York City, and Washington, DC. Additional cases are under investigation.

    • Most cases are in children between the ages of 1 and 14 years, with an average age of 8 years.

    • Cases have occurred in children from <1 year old to 20 years old.”

    Another BC child’s story was published earlier…read it here

    LEAVE A REPLY

    Please enter your comment!
    Please enter your name here