I have a question for you. I am not sure what kind of meds Gage is now on, but my son has some kidney problems and is on Bicitra. Ever since we have started decreasing his dose, he has acted much like your description of Gage. Have you noticed any difference based on his meds?

Christa in the comments section posed this question.

Around age 5 he went on bicitra and EPO (which helps people with kidney failure and cancer get back some of their energy) at the same time. Gage went off the bicitra when he started dialysis last September, but I can’t say that I noticed if that had a play in his behavior. Gage’s energy, both good and bad, notably increased with the EPO/bicitra start and recently after transplant because of the steroids (he’s on what is considered a "low" dose now) based on the docs and some theories from friends. I will say, in addition, the transplant offered a boost of energy and for Gage, more energy means more impulse control problems. It’s been an adjustment.

The problem with kids on multiple meds is that you really never know. While the doctors have a better sense of med reactions from hearing stories from other patient’s families they don’t really know either. One thing that many parents of ARPKD kids notice as a commonality is behavior problems. This is both true for pre and post transplant kids. Is this a sick kid thing in general or specific to ARPKD or kidney failure?

While I think Gage would have been a challenging child had he not had PKD or OMA, I’m fairly certain he wouldn’t have been such a challenge. I think his issues are a mixture of illness, meds, emotional coping with said illness, treatment, meds and delays. Being a sick kid changes who Gage and Quinn would have been, so their disease/disorder defines them. I’ve had many, many people tell me that we shouldn’t let PKD/OMA define them (or us as a family). The kids are who they are is because of PKD and OMA. It definetly defines this family.

But really, what impacts what? Meds-Behavior? Disease-Behavior? Disorder/Disease-Behavior?  Emotional Health-Behavior?

I’ll always appreciate that there are meds that control the symptoms and help with polycystic kidney disease, kidney failure, dialysis, and transplant but I’ll always worry about the big and small side effects (long term/short term) we don’t know about and certainly those we do because drugs are rarely tested/followed by researchers on children.