I realized I never updated everyone on how my meeting went in January with my congressman representative.  So here goes it! The good news first!

I met with the congressman rep as expected and he was super compassionate and interested in helping. I spent a full hour with him going through the presentation I brought. We discussed the need for funding, insurance mandates and ways he can help support awareness. I also shared my personal story as well as two other Pennsylvania children that I closely follow with their mothers. To my surprise he had a personal experience himself with a family member that was unable to walk after having strep. He agreed to help me get funding for PANDAS research. His exact comment was "we can spend millions to save a rare duck species think we can do better for our children". Honestly, I couldn't have asked for a better support from him. The ball is now in my court to get back to him with a breakdown of how the funds would be spent and some additional information he needed.

The bad news is my daughter has fallen sick again and went into a PANDAS flare. She was completely symptom free from April 2024 until February 2025. We are two weeks into it and she has already shown improvements but we are still not symptom free yet. We immediately started the antibiotic and anti inflammatory meds but it took us some time to get another bicillin shot into her. This has proven once again to be a major game changer. I hope anyone reading this if they have a child who is suffering from PANDAS and can tolerate a bicillin shot they ask their doctor to look into this for them. For Emeline it started after having walking pneumonia at the end of 2024. We didn't put much thought into her subtle symptoms until early February when things exploded just after her getting the stomach bug. It seems those two illness pushed her over the edge and into a flare. Once again Motrin and Bicillin are giving us back our child. We are not back to baseline yet but very close. 

I will continue to pursue my efforts to help the PANDAS community but for the moment my priority is getting my kid back to baseline.

Stay tuned.