tapiash

We did but our doctor listed the condition as an autoimmune disorder and encephlatic "symptoms" The medical request did not have PANDAS diagnosis.

Did you PM me? I didn't get it.

My son had a reaction after the flu mist. It was 2 days after. Had no idea about PANDAS at the time. He had a second dose a month later. That is when the symptoms became worse. I woke up one night and realized I bet it was the flu mist which exacerbated the symptoms. As I was researching sudden onsets of OCD and tic I came across PANDAS. I found a doctor who diagnosed my son without any previous strep infections or any infections at all. He had not been to a doctor in over a year prior to vaccine. However, he did have a high cam k. I followed through with the vaccine compensation program and his case was assigned to a judge a week ago. Hoping for the best. It has been a rough few years. So sad because I thought I was doing what was best for my son. What we think happened was my son had an autoimmune reaction to the live virus. The same way strep mistakenly attacks the basal ganglia, this live virus attacked my sons. Very scary.

Its been a while since I have been on but my son had 4 IVIG approved with Cigna. We didnt even have to appeal. We had a diagnosis of PANDAS. And also a code for general autoimmune disorder and I think encephally.

So how do I find this doctor. We are in NM. It took us years to find a PANDAS doctor. Now Im no thin king it is PANDAS

He had a High CaM K. We live in a very rural area. My son in is the only one diagnosed with PANDAS in the entire state. My doctor is in Ca. We continued his treatment because last year it worked. i am following the orders that's it. I am confused...why have you been treating him according to PANDAS protocol for a year if you are not certain he had PANDAS? Has a doctor been prescribing all those meds without having determined that he does in fact have PANDAS? If so, that is alarming!! In answer to your question re steroids, if he has Tourette Syndrome then yes, prednisone and other similar steroids can make the tics much worse as those steroids increase dopamine which in turn increases tics.

We have been treating my son for the past year with PANDAS protocol. Antibiotics,prednisone and IVIG. fish oils, epson salt. Recently He started ticking REALLy bad. His eyes are blinking,he is rolling them. Today he started opening up his mouth along with a funky movement. I started him on prednisone today and it made the tics a whole lot worse. Very extreme. This happened last time I put him on so I took him off. Can prednisone cause tics to be worse. Does he have Tourettes and not PANDAS. I'm trying to get an appt. in Houston but I don't know what to do in the mean time. I FEEL So bad for him. I want to fix him and I cant. I cannot go through this again. Last year the treatment worked. What am I doing wrong?

What is XR? Dumb question,I know. I need to go back and review the book. What is GAS?

Its been a VERY long time since I have been on here. Until recently Ethan has been doing great. He has had steroid burst,antibiotics, and IVIG . All which have been very effective until know. He had a case of impetigo about a month and he started blinking real bad,behaviors started to become worse. He was started an antibiotic and a prednisone both of which have been successful in treating his eye tics. It has been two weeks since he started steroid burst nothing! His eye tics are worse than I have seen. Very freaky! Any suggestions??

My son has had 4 IVIG. All made in full by Cigna. I did not have to be reinbursed because I did not have to pay any out of pocket. Is this what you are asking?

I sent you a PM. Unfortunately there is no docs in NM. We traveled the world before we found our doctor. let me know how I can help you. I live 3.5 hrs from ABQ

"officially" sick is when the immune response takes off- I don't know how long it takes w/ strep for the immune system kicks in, but I think there's a good chance the friend was contagious on Saturday. Anyway to get some abx and or prednisone? You could try ibuprofen to help with inflammation in the mean time. Sorry this is happening. Praying that this is a blip and not the start of something bigger. Thanks so much. We have a prescription of zithromax available at the pharmacy. Is penicillin better? There is never an ending to PANDAS is there? Does anyone know where I could find documentation on flu mist and encephalitis?

As many of you know my son started receiving treatment for Pandas in May. He has had antibiotic,steroid and three ivig. He has been doing amazing but on Wed he came home blinking non stop. During his first exacerbation thats how it started and everything gradually got worse. At first I thought he was reacting to the flu mist because it has been given to others at his school but as it turns out a buddy of his had strep last week. He played with him on Saturday and on Monday is when the friend missed school. It turns out it was strep. Could this cause an exacberation even though the firend was not "officially " sick. I thought IVIG would help this. Whats the point of IVIG if they can still become exposed. Should we have another one? The doctor is out until next week so Im not sure what we are going to do in the meantime. I took my son off of antibiotics and I think thats probably the reason for re exposure but for some reason I thought IVIG would take care of the antibodies and reaction. He had amazing results but now we are back to square one.