If you missed part 1, click here
Fighting for our son’s life...
We knew that we couldn’t accept that answer of “no”. Our son’s life was on the line. The specialist agreed to meet with me along with our son. I expressed our shock that he was refusing to try other treatment options on our son, even though two other doctors felt that he needed something more.
When trying to explain his decision, the specialist drew a chart on the whiteboard outlining the treatment paths that people with my son’s illness were supposed to take in our province. What was most shocking about this treatment plan is that patients start out with the least effective treatment option and only move to the most effective when the other options fail to work. Huh? It didn’t make any sense to us. Why wouldn’t you start patients out with the best treatment? Why wouldn’t you want to give them the best chance to get better?
Let me be clear, the specialist did not say that the treatment path they offer goes from the least effective to the most effective. Far from it. He made it sound like a wonderful plan. He may have gotten me to fall for it early on when our son was first diagnosed, but since that time, I’ve done my homework. I’ve spent more time researching treatment options for this illness than you can ever imagine. It had become my part-time job. I know that what works for one person, will not work for another. Not for this illness or any other for that matter. I also know which treatments continually have the highest success rates in studies, and it wasn’t the one that was given to our son.
After a lengthy discussion, the specialist was clear that he was not reversing the decision. Our son was to stay on the same treatment plan until it started working for him. It didn’t matter that our son’s health had gotten worse. It didn’t matter that he could die. It didn’t matter that our stress was going to continue. His treatment plan would continue unchanged and that was that.
Things continued to get worse...
I cried all the way home. How could they look me in the eyes and say that they weren’t going to do any more to help our son. How could they look at our son and say he would have to keep following the same plan even though he was still suffering and he knew it wasn’t enough. How?
Our son was devastated that his treatment plan was not going to change, and he no longer had hope of ever getting better. He stopped his treatment altogether and went on a downward spiral to self-destruct.
We were forced to watch this take place with no power to change anything. We were constantly waiting for bad news about our son. We had no faith in the very system that was supposed to help him.
Too little too late...
After another year of hell, our son was finally offered the chance to try another treatment option. By this time, his illness had progressed to being as bad as it could get. We knew that what he was being offered now, although on the next level on the chart, was too little too late. His illness did not respond to the treatment and escalated quickly back to the previous level.
With broken hearts we’ve watched our son’s health decline causing him to miss out on everything that healthy young people his age were enjoying. He was a victim of a broken, underfunded system.
While our son continued on a downward spiral, I watched other patients get the best treatment without having to follow the “chart”. They got to skip the steps – even the ones whose illnesses were not as advanced as our son’s was. They were the lucky ones who won the treatment lottery.
Unfortunately, some of the ones who didn’t win the lottery paid the ultimate price. I do not want this to be my son. I do not want this to be your child either.
By God’s grace, our son is still alive to fight another day.
Thankfully, the government now seems to be paying attention to this issue but talk is cheap. I don’t think anyone battling this illness – or their families – will get excited until we see action, meaningful action that will save lives.
Enough of that foolish chart and the lottery system. Being treated shouldn’t be a matter of luck. Every patient deserves an equal opportunity to get better. They deserve a treatment program that is right for them.
It is hard enough to have a sick child. Families do not need the added stress of inadequate treatment when it is not necessary. This is not an illness without treatment, but it is certainly one that goes untreated for many regardless of their age.
Illness = addiction
Specialist – addiction worker
Food for thought....
Did you feel differently about my son and our family when you learned that the illness was addiction? Unfortunately, many people, including some who work with addicted individuals, hold biases about addicts because they don’t understand the illness for the health issue that it is. Because of this, we are left with a broken system that is not working. A system that is based on an old fashioned notion that looks at addiction as a moral issue, despite how that theory has been proven to be wrong time and again.
Individuals battling addiction deserve to have access to the most effective treatment just like anyone battling any health issue. Can you imagine a young person with diabetes having to go through all that my son went through before getting the proper treatment? Would we ask them to start off with the least effective treatment and suffer for years before being offered something else? Would the parents of a youth with diabetes be denied the opportunity to discuss their child’s illness? Would only a handful of youth with diabetes get the proper treatment while the others have to go through phases that are least effective? I think not!
I hope this article gives you pause and a chance to reflect on one of the biggest health and social issues facing Islanders today. While I couldn’t possibly cover our whole journey in one article, I wanted to give you a little taste of what it is like to love a child who is addicted here on PEI and elsewhere in North America.