Believe in Those You Love

This past week our daughter struggled…to the point her dad and I were again desperate for intervention and help initiating multiple conversations with her care team. BUT ALSO…our daughter soared, and you cannot help but wonder if you did or are overreacting or “what is wrong with me?”. Mental illness is a constant roller coaster and not necessarily a ride someone or a family can simply exit. One does not “get better”, but instead they (and those they love) learn how to cope and manage. It is an illness that impacts the entire family…not simply an individual. Sometimes you are in the first car of the roller coaster scared to death, eyes closed and holding your breath. Other times you are in the back with arms thrown up, eyes wide and feeling triumphant. Often the family is never in the same car…some okay…some struggling.

This past week our daughter’s care team began over-turning every rock again (I cannot tell you how exhausting this repeated process is). Questioning if we are truly dealing with a simple panic disorder or if there are other physical contributors like a glandular disorder, malfunctioning thyroid or serotonin syndrome. You spend the week questioning what you know or trust to be true (again). You hear things like “at risk of being removed from home”, “intensive in-home family treatment plan” and unidentified disorders that might be counter-acting treatment (despite you have already done more bloodwork and testing than any young girl should have to endure). You spend the week first compiling a list of psychiatrists (because a list does not readily exist) and begin calling, only to learn most are not accepting new patients or first appointments are 6 - 9 months out. You cannot help but feel frustrated and angry wishing sometimes it would be easier if your child had cancer, because at least then they would not have to wait nearly a year for a diagnosis or treatment plan. Chemo appointments would not be cancelled because of viral exposures or snowstorms. And let’s be clear - both cancer and mental illness are life threatening. Situations like this leave a family desperate, exhausted and living in in a place of constant worry…for your child that struggles, yourself, your marriage and other children.

So now it is Friday afternoon, and you are ready to throw in the towel (for just a moment…never for that long…but you are simply exhausted) and then you get the following note from your care team…

“I have looked up the side effects of Zoloft (Sertraline) and many of your daughter’s current symptoms seem to mirror the severe side effects of Zoloft. I am not a doctor, but I would ask a medical professional if they think it would be wise to discontinue the Zoloft (given your daughter’s presenting factors), and how to titrate off of it. Additionally, I’ve read that Buspirone with Sertraline increases the risk of serotonin syndrome to the extent that it is strongly contraindicated unless signs of serotonin syndrome are closely monitored. I am sorry if I am alarming you, but I have had many situations in which I have brought similar information to the patient’s attention, and it has been potentially lifesaving.”

But because you cannot get a hold of any providers, you hold your breath, continue to give your daughter medications noted above (you cannot simply stop, they have to be titrated down) and you wonder where you will find the strength to continue navigating an illness so mis-understood even by the professionals. A mental healthcare system that has truly never been built and grossly under-resourced. You pull your family close and realize that strength is found by believing in those you love and trusting the strength of family. If we cannot find the team needed, we will build it.