Since my child has a combination of medical conditions that are unusual - even considered rare - there is little research available and no defined protocol. Consequently, I have been compelled to look at both the traditional and non-traditional sides of medicine for answers.
As you would expect, we started our journey in the world of traditional or mainstream medicine. This type of medicine typically uses conventional therapies to help prevent and treat disease. In addition to medication, these include lifestyle changes, counseling, therapy (physical / speech / occupational) or surgery. Our experience included all of these at one point or another, except for surgery.
With my son’s rare conditions, it has been hard to find doctors who have even seen other patients with the same conditions; let alone successfully treated them, as their conditions can be unique and quite complex. The number of doctors to choose from is limited and the doctors are geographically spread out. Most medicines that are suggested become trial and error.
After having limited success with traditional or mainstream medicine, we began to explore other options which meant looking at non-traditional… or combinations of both traditional and nontraditional. These may be referred to as integrative, functional or alternative medicine. It often feels like these names or terms are thrown around loosely.
In my research, I found some of the following explanations for these latter categories:
Integrative medicine: a form of medical therapy that combines practices and treatments from alternative medicine with conventional medicine.
Functional medicine: focuses on creating individualized therapies tailored to treat underlying causes of illness.
Complementary and alternative medicine: any of a range of medical therapies that are not regarded as orthodox by the medical profession, such as herbalism, homeopathy and acupuncture. One of the most widely used classification structures, developed by the NCCAM* (2000), divides CAM modalities into five categories:
Alternative medical systems
Biologically based treatments
Manipulative and body-based methods
Within all of these categories, there are a multitude of areas to read about and learn with new viable approaches popping up all the time.
It seems like everyone you know or meet has an idea for a potential answer, solution or remedy for you. I truly believe that all of these medicines, therapies, etc., work for someone because each person’s body varies in how they metabolize, process and respond.
So how do you know which area of medicine to investigate and try when there are a multitude of options?
Talk to others with the same or similar issues.
Join Facebook and other groups for parents and individuals with similar conditions to your child.
Pay attention to others that have similar responses to what you have already tried. Look for cases that sound the most like your child. For instance, my son has side effects from many of the medications; so, I found other people that had the same responses.
Decide what your child and family are truly able to handle.
Is your child willing to risk and endure experiencing potential side effects from a new med if it could result in a small percent improvement to their condition? If you decide to proceed, how long are you willing to stick with the new med?
Are you willing and can you honestly put in the time to test new meds, treatments and approaches? Note that I’m referring to time in terms of the physical, mental and emotional impact.
Determine how much you can financially put into trying each of these scenarios.
Does insurance cover the visits, meds, treatments, etc.?
How much out-of-pocket money can you truly afford?
Test and try new things one at a time.
Just like in any testing situation, you need to single out the variables and test against a “control” in order to see the true cause and impact.
Unfortunately, testing things in this manner takes time… often, a lot of time…before you identify if it has a positive or negative impact, or neither. And then, you need to determine whether that variable becomes part of your new “control” against which you’ll test the next thing.
I recognize that this can get complicated, and I personally rely on my background in business process improvement (and my husband’s “test and learn” mentality from his marketing experience), which I recognize doesn’t come easily for everyone.
Maybe I’ll write a whole other blog post on testing. Hmm. What do you think?
Acknowledge your child’s disappointment when things don’t work as hoped.
This is a big one for us. My son feels let down every time I get excited about trying something new and the outcome doesn’t meet our expectations. His feelings can range from disappointment to depression.
There also may be times where you need to take breaks from searching for answers and solutions. See my other blog post on this topic - ”Is It Okay to Say: "Enough?”
Don’t feel guilty for what you can or cannot try.
If your family doesn’t have the time, finances or mindset to put into trying something at a certain point in time... that’s okay.
You have to consider the well-being of all members of the family -- parents and siblings need to be a priority too.
Again, we try new things in spurts and switch back and forth between traditional / mainstream and non-traditional. Everything is done one at a time. As I have mentioned before, I involve my son in the process and come up with a schedule. We hold onto what helps, intentionally moving “slowwwly” on all things new. While the (lack of) speed can be rough, for some it’s the only way to go.
So right now, we have a plan to try 3 new things:
First, my son is going to try a new GI medicine for two weeks
Then a new sleep medicine - and then in two months...
Give functional neurology a try
In the past, we have tried vitamins, supplements and herbs. Actually, I have to laugh because many of these showed little benefit and therefore ended up in the trash. However, a handful have helped, making it all worth the time and money. We would not have found those that worked had we not tried all of the others.
So, as you can see, this blog post definitely carries my mantra of “Never Say Never” (that things can get better) and my ongoing theme of "Brewing More Hope."
On one hand, so many medical ideas can feel encouraging, because it seems you always have a chance for things to be better and will never run out of options for your child. On the other hand, it can also be extremely overwhelming.
But keep trying!!
Just do it your way... and in the manner that works best for you.
* Created by Congress in 1998, the National Center for Complementary and Alternative Medicine (NCCAM) is dedicated to exploring complementary and alternative healing practices in the context of rigorous science, training complementary and alternative medicine (CAM) researchers, and disseminating authoritative material to professionals and the public.
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.