What I Want You To Know

A couple years ago, I wrote a blog about the things I wanted people to understand about mitochondrial disease. I decided to do an update to that of sorts, but focused on medications. If your kid is basically on, say- a multi-vitamin and an OTC allergy med, with an occasional antibiotic for strep throat,  it may be hard to understand what it's like to need a lot more than that.

I know  drugs and even supplements seem to be a sensitive topic for many people, and one that some can be passionate about. Driven by this passion, some people can be very open about their disapproval about what we do or don't do for Joshua, or they decide to offer help by trying to sell me a vitamin their company sells that is a "miracle." While I realize these sales pitches are generally paved with good intentions, (so I still love you; I promise), please know that first of all- we DO use natural supplements already.  Some are actually considered standard treatment for mitochondrial disease kids. If you like more the natural route for medicines, this should make you happy! But the ones Joshua is on are very specifically chosen for his needs, and our doctors often have specific brands they favor.  In addition, some are done as prescriptions and therefore our insurance covers them. I'm not going to take him off these to try and defy the doctors' ideas and spend additional funds when I don't need to. I also can't imagine losing the groundwork we've gained just because your sister's husband's aunt had good luck with the magical supplement of the hour. If I ever do hear about a  remedy that I feel could truly be a useful addition (not replacement) to what we already are doing, I'll let you know. In other words: don't call me; I'll call you! 

I also want people to comprehend that when we use a conventional medicine for Joshua, it's always researched, justified, and also sometimes a last resort. We have arrived at some drugs that you may have never heard of, or, if you look them up, they describe a different use. That's because almost everything with mitochondrial disease and other diseases with limited treatment options is prescribed off-label. I've learned to be ok with this, although it can still be nerve-wrecking. If we try something and it isn't doing what we hoped, we remove it from the regimen and try again. Please understand that all drugs do have known side effects and yes, I have read about them. You don't need to re-scare me by telling me the horror stories you uncovered on the Internet. If we note that a drug is causing more harm than good, of course we'd remove it from the plan. 

Along those lines, we do frequently comb thought his (admittedly long) med list for ways to shorten it. We recently took him off baclofen (generally used for muscle spasticity but in his case for esophagus motility... See what I mean about off-label?) After several days, he started to have swallowing issues again and asked me to put him back on it. After talking to the prescribing doctor, we decided to put him back on one dose a day versus the previous two he'd been on before, and that is going fine. 

You may now be wondering why we need so many medications in the first place. The answer is that mitochondrial disease affects multiple systems. So Joshua, for example, needs medications for his heart, lungs, brain (nervous system) and GI tract. In addition, there's an energy deficit and that's where the supplements come in, to try and replace what the body may not make enough of, or process efficiently, on its own. 

Deciding to try certain meds, and especially to stay on them long-term has been one of the hardest pieces of this journey for me. I cannot state this enough: I do not take any of this lightly. Does it sometimes keep me up at night, even though other times I'm very at peace with it? Absolutely. 

The other thing I want you to know is that despite knowing these medications are essential to helping Joshua, it is a lot to organize daily and sometimes I really do wish he could wake up in the morning, have some cereal and watch cartoons leisurely  rather than sitting down at the table for a bunch of medications that sometimes don't even taste that great. Likewise, I wish I didn't have to stop his playtime in the afternoon for more meds, or make him do breathing treatments, or put the anti- pain lotion on his legs or check blood pressures, and then do it all again at night before bed when we are already exhausted. 

But of course I'm glad there are some things that help. We don't have the luxury of talking "cure," but we are lucky to have a few tools. And that's what I want you to understand. <3