Since my son, Jackson, started experiencing alopecia totalis on top of his Alagille syndrome (ALGS), life has been a journey searching for answers. We already knew that trying to find a solution for alopecia would be challenging, but I never knew how frustrated I could become that I was trying to heal my son from one disease while protecting him and keeping his donated organ safe at the same time.
We already knew treatments were limited with Jackson since a lot of the more “advanced” alopecia treatments are some sort of immune suppressant or side effects that come with a liver damage warning and the dermatologist was not comfortable with moving forward with them. Since the options seem limited for him, we decided to speak with a holistic doctor and try to come up with a plan that involved changing his diet and trying natural supplements.
Read about experimental therapies for ALGS
We did tests with a holistic doctor, and he suggested 4 supplements Jackson should try. They all were for different things to take the “burden” off of his immune system and try to let the body repair itself. Of course, we couldn’t just start the supplements; we had to check with my son’s liver team. Once they reviewed the supplements, they determined they weren’t comfortable with him trying any of them.
Each team member had a different reason to reject the treatments, whether it was because of an ingredient in the supplements they were concerned about, or the research on it was not enough or deemed safe enough for him to take. At the same time as finding out this discouraging news, dermatology suggested we could try an injectable since not only was he suffering from alopecia but now also eczema. This medicine comes with a 50% chance of hair regrowth.
At first, the transplant team was on board and gave us the go-ahead, but a few days later I received a message that they reviewed the medicine as a team and they weren’t completely comfortable moving forward. The medicine acts as an immune suppressant as well and based on the higher Epstein-Barr virus (EBV) levels that we have been monitoring over the last year they were not for proceeding because it could increase his EBV levels.
They told me the decision was up to me. They advised there was a chance it could increase the EBV and increase his risk for infections.
My husband and I had to ask questions like if the EBV increased would he be at higher risk for developing post-transplant lymphoproliferative disorder (PTLD)? They worked with us to explain all the risks and rewards. They answered my questions straight to the point.
They knew we wanted to move forward and gave us the OK. They decided they’d monitor his EBV levels closely. Should the EBV increase, we might stop the medicine, which is a risk, especially if his hair does grow back, but as his parent, I have to think of the mental toll this is taking on him as well. We have a game plan in place, and I feel positive about the fact that we can try something rather than nothing. Of course, my highest priority is protecting his liver and making sure he thrives and is alive.