SparksMom

TeamTyrion thank you so much for sharing. What a journey you’ve had. How lucky your son is that you were so committed to helping him. And your story inspires hope! Thank you.

Thank you TeamTyrion, that is a consolation. I really appreciate hearing others stories on here...it gives me hope. I worry so much about my little guy. Thanks for sharing your story. What sort of treatment did he do if you don’t mind me asking? Our doc is recommending tonsils/adnoids out first.

Our DS is 4.5 yrs old. He had a severe speech delay at 2. He is now in the normal range for expressive and reception speech but is moderately delayed in his social use of the language. Dr K is 90% certain that he is a PANDAS patient. He has many of the symptoms but I feel some of them cross over with ASD. His Cunningham Panels (done twice) were extremely elevated in the Anti Tublin, borderline in Cam Kinase and borderline Dopamine. We did some Armin Labs testing and his CD57 numbers were so low that the lab made a note that he must be suffering from a chronic long term infection. He got sick so often from the ages of 4 months - 4 yrs i felt like I never left the house. And then randomly we gave him Amox for the first time in his life at age 3.5 yrs for a suspected ear infection and all of a sudden I’m googling “can ASD like traits lessen with the use of anti biotics”. Everything points to PANS/PANDAS except his social communication interactions. He is so interested in being around other kids but sometimes he just zones out and is on another planet. He will often miss when peers and adults speak to him and often struggles to get his words out. Sometimes I just find him doing circles around the periphery of his friends playing...keeping an eye on them but whispering to himself and engaged in some solo pretend play. He is really into pretend imaginary role play. It can be a little obsessive. Anyway does any of this sound familiar? Any feedback or sharing would be so welcome. We are cautiously proceeding. But as you know all the PANDAS/PANS treatments are intense and aggressive and so worth it if you know what you are treating. Just an FYI we have had our son evaluated for ASD and it came back as no diagnoses, but some traits.