allie01

We are going through the similar hoops... have a great family doctor who admits he knows nothing about PANDAS, but is willing to humour me with as many swabs, antibiotics and bloodwork reqs as I want. Son is ticcing badly right now, waiting on a swab from Tuesday, but ticcing has been going on for months, inspite of 3 rounds of antibiotics- 2 of which our whole family went on. Have not found a doctor in Southern Ontario who deals with PANDAS, but went to Sick Kids recently and met with Dr Arnold, who is a pyschiatrist focussing on OCD. He wrote an article that I found online about OCD and PANDAS(not our son's biggest issue with PANDAS- mostly ticcing and anxiety) and so I had my family doctor refer us to him. Dr Arnold did a full pyschiatric evaluation ( "you have a normal healthy kid--it is not PANDAS, but likely a ticcing disorder associated with STREP" I am not sure what the difference is!! ) and referred us to a Habit Reversal Therapist to deal with the ticcing. After first visit, impressed, but need to wait to see results. Have been to a neurologist as well, who says as well that it is not PANDAS, but likely a ticcing disorder associated with STREP. I don't really care what they call it. It is happening, he is sick and there seems to be no guidelines to follow. Very frustrating. I just read on the forum that dental checkups can cause flareups as well! Yikes!

THe information would be appreciated!

Hi there, I am in Southern Ontario as well. We have a great pediatrician who diagnosed our son, but doesn't seem to know how treat him on a regular basis other than monitoring him for symptoms and putting him on antibiotics when flareups occur. Is this all we can expect in terms of treatment? He is referring us to a behavioural therapist, and we have an appointment with a pediatric neurologist in a few months. This is great...we are happy to see as many specialists as we can. However,as it is not a widely accepted diagnosis in Canada, I feel like we are in over our heads. My concern is the dealing with the upcoming school year and the exposure to strep and the potential flare ups of symptoms again and basically managing this illness rather than it managing us! Do you think it would be worthwhile seeing your pediatrician? It would be nice to see someone who actually is familiar with PANDAS and can help us in the preventative aspect of treatment...any thoughts or suggestions or information would be helpful.