Any parent who has ever had a child in the hospital can relate. We’ve all been faced with the dilemma of which treatment we should support and which we should question. When we have more than one option to treat our child’s illness, we’re grateful—but it can also leave us feeling like we’re “playing God”—especially when our children have a rare disease and the treatment options are a matter of life, quality of life and death.
When we learn our children have an illness stemming from chronic to life-threatening, our next conversation with the physician is: what’s next? What can we do to help them?
It’s at this point that we’re introduced to the names of medications we can’t pronounce, surgeries, FDA warnings, a long list of side effects, while struggling to weigh the use of medications when they’re off-label, researching how long they’ve been on the market, looking into clinical trials and asking, “how will my child react to it?” And if doesn’t go well, will it be my fault?
You don’t have time to wonder. They need a decision to be made—NOW.
The only thing you know for sure is that you’ll probably never know the divenly “right” choice to make: the one that will leave your mind and your heart at ease. As the President and Founder of Stop CAID Now and the mother of two sick boys, I know this feeling all too well.
At just over a year old, I was injecting my son daily with an off-label drug, giving him infusions that I had to sign my approval of, knowing full well that it could lead to cancer or even death.
My other son is taking a drug that can cause suicidal thoughts, headaches, nausea, restlessness…but it will also improve my child’s life.
So, you question yourself and you pray.
I educate myself, but even then, I feel horrible making a decision “based on what we know today.”
This is my child—I’m injecting my child. This is what goes through our minds, knowing that every injection is a risk and a necessity.
It is also the reason I do not recommend drugs, yet give all the information I know about the ones in question. The interaction with certain drugs and foods, or our own body can never have me so confident as to say what “works.” What works for one, may not work for the other, and it’s all trial and error.
So how do you make this crucial decision in an educated way? Start by asking your doctor the following questions:
- What should I expect from this medication?
- What are the side effects of this medication?
- When will there be (or when will I see a) response from this medication?
- What is the next move if this medication doesn’t work?
- Are there any foods that should be avoided when on this medication or supplements that should not be taken?
- Should we continue to monitor their condition via blood tests to make sure there aren’t any severe side effects?
What about researching and using resources on your own? Here are some tips to finding the right information to make your choice:
- Each disease has its own mechanisms in how it attacks and impacts the body. Understanding the disease is KEY in understanding how to treat it.
- Research online and try to find reputable organizations representing the disease as they usually have excellent resources.
- Make sure your doctor is not getting paid to advertise and prescribe this treatment.
- Ask about all possible treatments before making a choice.
- There are no stupid questions.
- Keep daily records of your child’s symptoms when starting a new medication.
- Don’t hesitate to call on other physicians who prescribe this drug, maybe for other illnesses, to see what their patient’s reactions have been.
About the Author
Lisa Moreno-Dickinson is a mom of three wonderful and loving souls. She has two sons with different illnesses and started the first foundation to cover all Childhood Autoinflammatory Diseases. She coined CAID to help all children who suffer diseases such as her son, Brody. Her oldest is not fully diagnosed but has a connective tissue disease with mitochondrial findings. What melts her heart is a child’s laughter. What breaks her heart is anyone suffering, especially children or any child/person who feels limited.
DAME= Determined Ambitious Mom Endlessly working for a CURE and ways to help all children with CAID