Nathan’s fight against P.O.T.S (Dysautonomia)

Asking for help is not something I have EVER been comfortable with. This is a hard post to write and hard reality in front of my eyes. I am a fighter, but some days, I have no fight left in me. This is our story, please share it.

Unfortunately, the 4 kids and I have been faced with this situation, that I am all too familiar with for a second time in 3 years, now with my eldest son Nathan who just turned 15.

Some of you may know me as “Landen’s Mom”, he’s my 8 year old battling Systemic JIA; A rare auto inflammatory disease that he was diagnosed with in 2017 very suddenly. Because of this diagnosis, we are in the hospital 2-3x a month for Landen.

I had just re-figured out our life with hospital appointments & dr’s visits, amidst my college graduation & new job for myself after Landen’s 3 years of health setbacks, life was finally getting back to a routine. A breath of fresh air, and I loved every minute of my new job.

Except it didn’t last long. Things came crashing down on September 9th 2019.

When Nathan started complaining, I brushed it off (we spend too much time at VGH with Landen) but Nathan’s symptoms quickly seemed like appendicitis, which later turned into a series of medical mysteries, which is now what the dr’s suspect (& are certain) to be POTS syndrome after repeated hospital visits ending in a hospital admission at the beginning of October. We have lost count. & it continues.

Between Sept 9th to now, Nathan has had several blood draws, MRI’s, EKG, ultrasounds, and CT scans.

After 4 days of being admitted, It was discovered that when Nathan stood up in front of the Doctor with an arm cuff on, Nathan’s vitals were not normal while standing to sitting, and sitting to standing/resting. They repeated them over & over. The Dr was onto something.
Finally. I felt hopeful!!

2 days later we were discharged with a follow up appointment scheduled at BCCH. I thought “great!”. Little did I know what came next. 

POTS is a rare syndrome that affects Nathan’s autonomic nervous system. I had no idea what we were in for, or what that even meant.

It has now been 62 days of watching Nathan suffer. He is completely unable to attend grade 10 at
EMCS. The doctor suggested I set up homeschooling (wait, what? Nathan wants to go, was eager to start but now can't.)

I have tried sending him to school twice, and have been unsuccessful both times lasting no more then 35 minutes.

Thankfully SD62 has stepped up and has a teacher coming in our home once per week to help Nathan.

Nathan spends a large part of his days in bed due
to non stop dizziness, nausea, 24hr migraines, chest pain & severe stomach pain. No medication has given Nathan ANY relief. 

My usually outgoing, happy 15yr old asks me every day, “when will I start to feel better?” and for the first time as his mom, I have no answer. I don’t know what to do. Everything we have tried, doesn’t work

I am reading & researching as much as I can because I have never heard about POTS prior to this. Have you? If you have it, or know a cardiologist who can help in Canada or elsewhere; please reach out to me ASAP. We are desperate.

The reason behind this go fund me;

Nathan needs to be seen by a cardiologist who treats POTS & who can complete a “tilt table test”, in a dysautonomia clinic.

In BC we have ONE dysautonomia clinic at BC Children’s Hospital. It operates once a month, leaving a SIX MONTH waitlist, which Nathan is on.

I simply CANNOT watch my son suffer for an additional 6 months. This is crazy to me.

As a single parent of 4, I haven’t had enough time to plan for another setback like this, especially right before the holidays. 

It is my absolute biggest goal to travel outside of B.C. within the next 3 weeks to have Nathan seen by a cardiologist who can complete a tilt table test for POTS so we can hopefully get Nathan on some medication to relieve his symptoms.

These funds will cover all travel (airfare, hotel, medical bills outside of Canada as insurance won’t cover due to pre existing condition, food, & lost wages) 

(current locations are in Mexico, Texas or Florida, if you have any other suggestions, again pls message me). 

His current medications from the paediatric neurologist are not working at all. This is also a work in progress & they are trying. 

Thank you for taking the time to read our story and share our link. I believe in paying it forward, and when life settles down for us again, that is what we will do.

Thank You So Much for the love & support.

Jillian, Nathan, Natalie, Landen & Lucas.