When Preparing for an Emergency is not Enough

When rudely introduced to the rare disease world in December of 2015, one thing I found out is that we would be responsible for educating many responsible for caring for our son. Yes, there are specialists who know what the textbooks say and we have been fortunate to even have some who have gone above and beyond. But specialists are not the only people involved in the care of a young one (or anyone) with a rare disease. There are people in the schools, primary doctors, emergency medical professionals, and countless others that we rely on through the course of our lives to provide care when it is needed.

My husband, our 20 year old rare son and I relocated last year. The state we had come from, I knew - I had lived their my whole life and since our son's Addison's diagnosis I had been in touch with people who implemented emergency protocols from the state level all the way to our local fire/EMTs who regularly trained on adrenal insufficiency after the protocol was put in place. When our son had activities in other counties, I visited those emergency response agencies to ensure they would follow protocols that I had on paper. You see, one thing I learned early on is that even if you have a medication on you that is needed to save your life - it does not mean that an EMT can administer it, nor do they necessarily carry it with them. But I had gone through the necessary steps and had protocols in place in that state within five months of our son's diagnosis to do all I could to save him from an adrenal crisis.

In our new state I knew that our specific area actually carried the emergency medicine on their rigs. Within the first week here I visited our fire department to make certain they had it and that they were aware of the emergency protocol for adrenal insufficiency. I also made them aware of my son's condition and our address for emergency purposes. I felt like we were again well prepared, as he was now an adult and I was including him in all of these steps.

A month ago my husband and I went on a once in a lifetime two week vacation where we were not very accessible. Our son has not met many people here yet but we reached out to a few neighbors "in case of emergency" - and he knew them a bit and said he would call them if needed. This was the first time he was left alone for more than a long weekend and he did everything exceptionally well, but we have a system that failed us. I will preface this by stating that our son is okay now....

On July 16th, at about 11pm our son started to feel unwell - and with Addison's if you start feeling nauseous it can be a sign of low cortisol, which if not addressed could lead to an adrenal crisis. He did what he should do - took more oral meds, drank an electrolyte drink and laid down to relax for a bit. At this point, I should add there is a strong family history of anxiety and panic attacks which he has not escaped. He then started vomiting and messaged me (as I was about to board a 15 hour flight with no contact available). I was walking him through the steps to take care of him self, but was not getting many responses. I said if you need to call 911 - about 15 minutes later I got a response that he had. I, about 10 minutes later spoke with the EMT who assured me that his vitals were not super alarming - that stress had been a huge cause and they were transporting him to the hospital.

What I did not know at that time is that our son waited close to 30 minutes and in that time one ambulance drove to our house and then turned on their lights and drove off. When the one came to him he asked about that and was told there was a level 1 emergency and he was considered a level 2. Please keep in mind that an adrenal can cause death within 20 minutes if not treated!! I cannot imagine it being less urgent than any other health emergency. He was given fluids and then taken to an ER I would not have chosen where he was questioned numerous times about drug use despite a toxic panel.

I have since been working with Dannysdose.com to put a plan in place. My son is now an adult, so he and I will go in and sit down with our emergency services and have a detailed plan written out for him. This plan will be sure to again (I thought I already had) clearly include our address and his condition, what the emergency protocol is for adrenal insufficiency, what hospital he should be taken to and who his endocrinologist is that should be contacted upon arrival there. There is no excuse for how our son was treated and I am much calmer now than right after it happened. I am not going to yell and get angry, but I will work to make sure that this does no happen again - to him - or to anyone else with a rare and misunderstood condition in an emergency condition.