Social Interaction Deficits PANS/PANDAS?

[SparksMom]

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. 

[TeamTyrion]

Yup, so much of this is familiar. our son also very sick from an early age to about 3 years. He also enjoyed being around kids at a young age but struggled to actually interact with them. He did insane amounts of imaginary play. Really, so many similarities. My son's onset was at age 5.5 but it had been building it seems. Things were terrible for about 1.5 years, then he got better but still had issues. He is now 13 and is doing great. There are still tics and the occasional ocd but nothing as horrible as onset. We have a Pandas specialist who treats him with abx when needed. If it's any consolation he has many friends now and is able to interact with them very well. Playing hockey gave him a lot of confidence. He misses face-to-face contact with all his friends right now. 

[SparksMom]

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. 

[TeamTyrion]

I completely understand with needing to hear from others. We tried so many supplements over the years. We also did neurofeedback (muscle testing) and cognitive behaviour therapy with a child psychologist. Looking back the most important things that helped were - clean diet (real food not processed) with low oxalate foods, tonsil and adenoid removal, and learning how to "fight" his ocd and "worry brain" with common sense techniques that were given to us by the psychologist. Those techniques continue to be useful to this day, but only when he's not in a flare. When in flare it's too hard - his brain is inflammed and only abx will work. Tamar Chansky's books are helpful in understanding the talk-back techniques. I would also say that learning to re-wire his brain with music lessons also helped. People seem to look at me sideways when I say that but I truly believe it made and continues to make a difference. Another book I recommend is: The Brain's Way of Changing by Norman Doidge. It's been a long journey for us and we understand that our son will always have tics and worry brain issues to some degree, but they can be managed and he is living a great life. He excels at school, has many friends, participates in sports, camps, etc and is very happy about his life. 

[TeamTyrion]

Just to add - I would definitely recommend the T & A removal. I believe it made a big difference both in ridding him of an embedded infection and preventing further ones. 

[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.