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I just thought I'd share. We were doing well for 5 weeks. As of this week DS has a broken bone, and a cold. You can imagine the result. This journey is difficult. For the older tween, I think the most difficult part is the isolation these flares bring. I feel like I am hiding my child. He is not able to communicate with his friends and neighbors in the way he normally could. Every time he flares, they now notice the dramatic changes. He is a completely different person. Before, you could chalk it up to "kids being odd." Tics, some OCD but he could hide things more easily himself. Now, he is truly suffering from mental illness. He can no longer control it when flaring. And the stigma attached to that is overwhelming. I am more upset to think that people will readily accept a biological or environmental insult as explanation to paralysis , but yet they think its not possible when it comes to wide mood shifts, debilitating OCD, paranoia, rage. So for now, we hunker down and wait for this flare to pass. Recent labs show no immune system. His IgG has dropped very low so IVIG will be covered. He remains on two antibiotics. We have sent for MTHFR test. We will address mold issues in the house... It all takes time. And in that time, I fear he will lose his friends, his neighbors, his community. But I suppose we need to press on regardless. We are using therapy to cope. I may consider adding Lamictal though I am scared to do that. We'll be okay. It's just hard, really very hard.
