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I can often tell from other symptoms. If I have strep, i usually have a bad headache and often times a stomach ache. I have joint pains as well. If in doubt, the home strep kits do work great! Good luck.

Thanks for the info. I just ordered some of the olive leaf extract. I just took my son off ABX also as we are struggling with very bad diarrhea. I hope this works!

My 15 yr old son was diagnosed with PANDAS one year ago. We have had some success with high doses of antibiotics but they currently seem to not be working as well. We are currently "under review" from our insurance company for our first IVIG treatment. We had a 5-day steroid burst about 2 weeks ago and my son showed HUGE improvements since the steroid burst. We know it will probably be temporary but it has provided some welcome relief and allowed us to start the school year on a high note! We also have been able to reduce his other medications by about half in the past 3 months (including SSRIs). Don't be afraid to try a steroid burst - it has really helped us right now!

My son received the H1N1 dead vaccine shot last year and had a horrible exacerbation within a week. We were still new to the PANDAS diagnosis (thus did not even think that the shot could be a problem but got the dead virus just in case). His first exacerbation resolved well after 10 days of Augmentin. We could not get the exacerbation from the H1N1 shot to settle down for almost 3 months. When I mentioned this to Dr. Nicolaides she felt the shot probably triggered it. She stated that the seasonal flu seemed to be OK but the H1N1 caused many to react. I asked our pharmacist if they were offering any separate shots this year and it does not sound like that will be an option this year. We will not get vaccinated this year. I'll just choose to be a germaphobe instead of reliving last year!

Thank you so much to everyone who replied...we are waiting and praying. Ibuprofen helped but is becoming less effective. Starting steroid burst today...we'll see!

I remember a week or so ago that someone said they got coverage for IVIG from Blue Cross Blue Shield of Texas. If you see this, could you please remind me what you submitted to help get authorization? Our predetermination is still under review but I wanted to "arm myself" with as much information as possible. Does anyone have the statement from United Healthcare or any other helpful info? Thank you - this forum is an amazing blessing!

I have had one phone consult with Dr. Nicolaides in February, went to see her in July, and have another consult scheduled for next week. She was very thorough in her office visit. She favors antibiotic treatment but did tell us she thought we were good candidates for IVig. She referred us to Dr. Cunningham's study and mentioned the Yale study so I think she is pretty "in the loop" with things in the PANDAS world. We did not get a TON of new info. but she was great at looking at the big picture and discussing many things PANDAS and non-PANDAS related with my son, especially related to his education.

I have seen similar results with my son. We are awaiting insurance review for our first IVIg treatment. I tried ibuprofen as a "band-aid" until we can get IVIg. We have seen such an improvement. We are using 2 200mg tablets every 6 hours while awake. It has greatly reduced his vocal tics and facial tics. We just got back the first of his Cunningham scores. His CamK is 184! I'm hoping this will help our insurance review.

Thank you everyone for all of your help I forwarded the FAQ info. to my DS's doctor. We tried ibuprofen all day today and have already noticed a HUGE difference. It is like the clouds parted and there is a glimmer of hope. We are so relieved and will just continue on our journey...thanks again!

Sorry, we are a little new to this forum. I have read a lot about trying a steroid burst. We are awaiting insurance review on first attempt of IVIG. My DS15 been on some form of antibiotics since Sept 09 but they no longer seem effective. We are awaiting results of the Cunningham study. My son still has elevated ASO and Anti D-Nase titers and his tics and emotional lability are horrible right now. I'm so nervous about school beginning - what a way to begin high school. Could someone please describe what a steroid burst entails? We need to try something new while awaiting the IVIg. Thank you!

Wow- I am blown away by the number of people going through the PANDAS adventure. THANKS so much for all of your replys. I needed data from my wife who is the medical 'expert' on our son- while I fight the insurance battles. We had our son (15 yrs old) in a residential OCD treatment program at Rogers Hospital in Oconomowoc, WI for 50 days earlier this year and we're still working through those insurance battles. As an aside, it's a very good program with the primary benefit being ingraining a "competing response" until it hopefully becomes routine for him. To answer some of the questions that came up- Antibiotics that we have used are....Amoxicillan combined with a 5-day course of Zithromax. We have been on Augmentin XR 2000mg twice daily since February and are now taking Cephalexin 500mg tabs a total of 2000mg per day. He has not had a steroid burst. The entire family has not been treated for strep - we are going to check on that one immediately. Dr.Nicaolaides did not run tests for other infections- and it's interesting as a recent blood test showed very elevated white blood cell count.

I just heard about this forum and first time posting so apologize in advance if this is a naive question. We are 11 mo's into first hearing about PANDAS and after seeing our son crash a few times during this period only to be brought out of it by antibiotitcs, and seeing the correlation of illness and a severe increase in tics, we are convinced he has PANDAS. We went to see Dr. Nicolaides a few wks ago and she is convinced as well. Problem is we have had to constantly increase his antibiotic levels to pull him out of each succeeding crash, and he is pretty much at the max level and is no longer responding to them. Sounds like time for IVIG which is what Dr. Nicolaides suggested. Here's the potential naive question- does anyone know of any research studies being conducted, or soon to be, where the cost of the IVIG is covered through the study?