After all the ups and downs of the last 5 weeks, we are doing IVIG again. This means B spends 2 days in his Neurologist’s office receiving donor antibodies via IV in an effort to bring his immune system all the way back, steroids for the migraines and immune reaction to the new antibodies, and saline for hydration.
Then we hope he won’t have the migraines and vomiting, a common reaction, which he had after last time.
He did well today. It’s very hard for someone with a OCD fear of vomiting to let you do something he knows will likely make him throw up. I can’t imagine the stress in his little head-but it is palpable as we peel him from the car and hold him on our laps while his heart pounds away.
I share because, the invisibility of this illness and its psychological manifestations causes many to blame and question children and parents. These are sick kids who need extreme medical intervention. Treating the symptoms (OCD, ADHD, anxiety, etc) will not cure them and may cause harm. Families need more medical professionals knowledgeable about PANDAS/PANS and insurance coverage for these doctors and procedures.
In the months since B’s last IVIG we have had huge gains. Our hope is that doing it again will bring our son all the way back and give him much needed relief from his symptoms and a chance to just be himself without the demons that have made everyday such a struggle.