I have been researching PANDAS and reading through the forums here, but I am still a little uncertain if my son could possibly have PANDAS and I would like to ask if those of you with experience could please give a desperate mom your opinion?
My son's dr is sending us to Dr. B for an evaluation, here is our story:
My son is now 9 yrs old in 4th grade, when he was 6 yrs old in 1st grade something changed, he went from a typically developing kid to an out of control child. He began having temper tantrums/rage attacks, anxiety issues, including seperation anxiety. He had no conrtol over his emotions...I thought he developed bipolar disorder. He also started having urination accidents and constant need to urinate which he never had before. Sounds and noises bothered him, everything everyone in the family did to make noise bothered him. He began an obsession with food, he would eat it, hoard it, steal it from others, at all costs, and we had no idea why and could not get him to stop. To this point he has now regressed in school, his writing is terrible and a daily struggle to complete most assignments. At age 7 he was diagnosed with Hashimotos which is autoimmune thyroid disease. I had hoped maybe his behavior would improve after starting meds, but it never did. His dr NOW thinks the Hashimotos could have been brought on by the PANDAS. So in the last 3 years he has been to several psychiatrists, been diagnosed with ADD and posible mood disorder-nos, he has been on tons of psych meds and STILL is. I have taken him to a naturopathic dr and tried GF diets and all natural diets, he has been in counseling, and nothing has worked. His dr started to think about all of the symptoms and everything we have tried and finally came up with PANDAS. He feels pretty strongly my son has it. My concerns are that when I read or watch videos the children seem to be so much more autistic like with their symptoms, and the OCD or tics seem to be the major symptom. My son has had major anxiety issues and then the obsession with food, but that is it, not the typical repetitive OCD behaviors. Also, he has had a cough that has been ruled out for everything else. We have seen every dr possible, it is not asthma, allergy, infection, and does not respond to any meds. His psych told me months ago he thought it was a tic. Other than that possibility (which I am not positive it is a tic), he does not have tics. Lastly, all 3 of my kids have had strep, I just can't remember if my son had it at the exact time this all started. The last 3 years have been so hard, going from dr to dr searching for an answer as to what happened to my son. I know something is wrong with him, but if its not PANDAS I dont want to travel to see Dr. B and waste his time, put my son through another experience, and have my hopes of an answer crushed again. Is there anyone here who has a child dx with PANDAS who did not have major problems with tics or the typical repetitive type OCD? Did anyone have a child with more anxiety related symptoms, or am I being led down the wrong road?
I would so appreciate any input/advice from anyone here.
Thank you so much,
Sincerely,
Stephanie in NY
