Testing and Trialing New Approaches to Heal Your Chronically Ill Child
In life, there are always new things to try, new roads to take and decisions to make. The same can be said for the chronic illness road. Since new medicines and new therapies / treatments are constantly being developed, choices have to be made on what to trial and in what order to trial. This includes new medicines, supplements and therapies.
I have learned that whenever we choose to trial something; it is best to treat it as a controlled experiment, where all factors are held constant except for one. In other words,...
We only trial one thing at a time for my son. Each new medicine or therapy must be tried by itself, with no other changes. Otherwise, we don’t know what truly helps and what doesn’t as well as what is causing side effects and what isn’t.
It can make for a very long road, but I feel it is still the best approach.
So, here is a rundown of the steps I take. We also involve the whole family since there may be a disruption:
Prioritize your child’s biggest area of discomfort / frustration. What is bothering your child the most?
Determine how much effort each new trial will take in terms of time, daily disruption and even financial cost. How much effort is needed? Will your child need to miss school? Will you have to miss work? How much is the cost?
Select the order you will trial new things. Select the one where you believe you’ll get the “most bang for your buck” so to speak. What will cause the least disruption and what has the best chances of having a benefit?
Pick start and evaluation dates on the calendar. What is the best date to begin? Will potential side effects affect any big events you or your child has planned? Will potential side effects cause your child to miss a test at school? Selecting an evaluation date just means a “decision moment” where you decide if the medication or therapy is worth continuing.
Begin the trial Document what you are seeing during the trial. Even small changes could be important. And you may need to share your findings with your doctor(s).
Evaluate along the way. Are you seeing any benefit? What kind of positive changes are you seeing? What kind of negative changes or side effects are you seeing? Does the benefit outweigh the side effects?
Continue, stop or even adjust the trial. At your evaluation point, you’ll need to make a decision. You may want to change the dosage of a supplement or medicine (up or down). Also, you may want to change the frequency of a particular therapy.
In my son’s case, we recently made a decision to trial three new options:
Supplement to help with brain fog
Alternative therapy called functional neurology to help with overall dysautonomia
GI medicine to help with gastroparesis
One of the hardest parts for us was deciding in what order to try. We had to ask: What is causing my son the most pain at the time? For instance,
Which is “worse?” …. Brain fog from dysautonomia, dizziness from dysautonomia OR stomach upset and reflux from gastroparesis.
How much effort will be needed? .... The supplement requires little effort and side effects are minimal. For functional neurology, the office is not in close proximity to our home. We have to arrange our schedules so our son can attend twice a week. That is a big commitment not to mention the cost. The new GI medicine has many potential side effects listed.
We decided to start with the supplement for brain fog since it had the potential to cause the least disruption. Secondly, we decided to try functional neurology and give it three months.
Then, we went to our calendars and planned out the upcoming weeks:
Start supplement for brain fog
Begin June 1
Evaluate July 1
Continue or Stop
Start functional neurology for dizziness
Begin July 15
Evaluate September 15
Continue or Stop
Start new GI medicine for gastroparesis
Begin October 25
Evaluate November 5
Continue or Stop
Jumping forward, we just completed the three months of functional neurology. At the doctor's recommendation, we chose to stop functional neurology and replace it with vision therapy. Since that therapy is so similar and we already know how it affects my son, we felt comfortable moving in parallel to trial the GI medicine. The plan is to trial that for 10 days and re-evaluate.
When given new options to try for your child, the natural response would be to try everything at once and as soon as possible. After all, you just wish for your child to be and feel better NOW! I recognize that trialing new things one at a time can make for a very long road and requires a lot of patience (and I mean - A LOT). For that reason, we often plan out months at a time.
Again, I have to emphasize that testing one thing at a time is critical. Otherwise, you don’t know what is causing the GOOD or the BAD.
I hope this gives you a framework for trialing new things in your child’s life. Here’s to wishing you patience and continuing to always “brew more hope!!”
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.