ghostrider

Colleen So your kids had PANDAS before the tonsils and adenoids were removed ? Does your 2 younger sons have PANDAS who have sleep apnea ? I am trying to see if removing tonsils and adenoids causes PANDAS .

I will like to know how many kids have tonsils and adenoids removed and did the PANDAS symptoms came after those were removed. I am trying to think if removal of those 2 enable these antibodies to reach basal ganglia. Please post about your kids. Thanks

I am dealing with same thing . 6th day into zithromax around 250mg ( with 2x200 mg on 2 days ). Some times ticks go up and some time they go down. Last couple of years during the severe outbreak of ticks they use to go down by 24 hours or so. I am thinking of changing the med but not sure .

mycoplasma and Lyme we have not those tests. Dr Gupta was ok it seems he does not know much in to PANDAS so was looking at my kid's IGGs and referred us to allergy doc Dr Yel at UCI . PANDAS wise he was interested in titers so not sure how much does he knew or not , may be he is not up to date with all the new information. Let me talk to Dr Lynn next week and make a appointment . This thing is going no where and at time you feel helpless watching your kid.

What did Dr Linn say ? Did he gave any medicines or any protocol he plans on doing. I met Dr S. Gupta at UCI at Irvine plaza . He did all the blood test for IGG and dnase titers which came negative. Only high side was allergy levels . Can Tics be caused by allergy if yes why they respond by antibiotic. I am puzzled by this as none seems to know so thats why i want to know what did Dr Linn say. IVIG is very hard and success rate is still at debate .

Seems every one fighting to find some one here in So Cal . I am in mission viejo but no one to go to other then my family doc who helps us with antibiotics. One child neurologist ( Georgia Prentice , mission viejo ) had put us on PANDAS path 3 yrs back but she had a limited knowledge 3 years back. I plan to go to her again on next Tuesday so will update.

25mg for 5 days should be ok . What is his weight ? I recall my son was given 20mg for 5 days for his asthma bouts few years back.

Thanks for sharing with us and i do remember all of your old posts. Seems some got lost when this forum got migrated. Your post gave us hope and we all look forward towards a better tomorrow.

Thanks for all your responses. This is quite a valuable information which is helping us overcome this thing. Right now my kid is having head shake tic as there were slew of strep infections in our area and his school and we are trying to overcome this and trying to get a appointment at UC irvine here in So cal. Will post any update after that. Cheers

Thanks for the reply , this gives us some courage to work on this .

I will like to know if any one here has posted who has out grown Pandas ? My son is battling this for last 3 years with 4 episodes 2 minor and 2 major. Each time i have used zithromax for 5 or 10 days and then tics ween of slowly and go away. I was just wondering how long this will go on so wanted to know if any has grown out of it. It seems this forum lost some data so all older post by me have been deleted. Any suggestion about any doctor who's doing some research on this ? thanks