By Kelli Mulloy
For our family, primary immunodeficiency disease (PIDD) has not been a single diagnosis in an otherwise normal life. We seem to have lots of variables and lots of doctors. Each new complaint results in what my daughter, Courtney, calls “another ologist.” She has a cardiologist, rheumatologist, neurologist, endocrinologist and the list goes on. Each new doctor seems to result in a new pill. And while the doctors all say they don’t like adding a pill, they do it anyway. I am careful to use the same pharmacy because I am terrified that she will have a bad interaction at some point. And I am certain that no drug company has tested its drug against the exact combination of what she is taking. So, how do they know?
In most cases, the pills have performed as expected and made her life better. So far, there have been no drug interactions or problems. However, a few months ago, my oldest daughter, Kaitlyn, started taking a new medication that Courtney was already on. I noted that Courtney had not had any side effects and that the drug had been very effective. Over the next three to five weeks, Kaitlyn had numerous annoying but not serious side effects. She ultimately found the medication to be very helpful.
I started to wonder: Did Courtney have those side effects too? Did she just assume that they were a part of her other various aches and pains and illnesses? Or, did she have some other medication that was masking the symptoms? When I asked her, she didn’t really have any recollection and told me I was overreacting.
But I worry. I know that medications have come a long way, and I know that each of my daughter’s doctors is doing their very best for my child. I just wonder. Thinking about each of her doctors, I realize I trust each of them, and I don’t really know what the alternative is.
One thing I do know is that it is important to have one doctor who is aware of and active in all of her care. Courtney’s immunologist is my first line of defense. I go through him for every referral and every complication. I use the doctors he recommends, and I don’t start something new unless he knows about it. I presume that he has seen this before and he knows what he is doing. I spend a lot of time on the Internet reading all I can, and I ask questions if I have them. He is always ready and available to answer all my questions, and I’m thankful for that.
If you have a child who is in this situation, and you don’t have a doctor acting as the coordinator for all of his or her care, I would highly recommend that you find someone you can trust. Then, be sure you pay attention, too. You are your child’s best advocate.
How do you manage multiple medications for yourself or your loved one?
This blog was reposted with permission from www.livewithpidd.com