Lotusgirl71

I am curious - is your child who is dx'ed with PANDAS always on antibiotics? Did your child ever show an increase in symptoms but tested negative for Strep? Did you have titers checked? If tested negative did you get a round of antibiotics anyway and did it make a difference? Is your child taking any other medications? Any other helpful information you may have. Thank-You

Good Morning; I am mom to 8 yr old son who developed PANDAS after a strep infection in July of 2006. Colin responded great to antibiotics after I finally got Dr's to listen and test him. Since then we battled meds - prozac and adhd meds. It seems like his PANDAS is in full attack mode right now. Tics popping up all over the place, depressed, irrational fears, inability to write and focus. I was reading "Is this my child" and I was amazed at what I was reading especially the section on TICS. I want to "adjust" my already picky eaters diet. I think I can figure out lunch and dinner but I am lost on breakfast. I know there is no - Wheat, milk, dairy, eggs, preservatives, red & yellow colour, lunch meats, breads, baked goods, oatmeal, tofu and soybeans. What does that leave for breakfast? Can anyone give me some Meal ideas? I am trying right now to remove him from Prozac, and we are trying to new add med that I think is working though would like to give it another week. I am also trying to have his titers checked because his pupils during the day are dilated. His behavior is just out of sorts right now. I also give him Flintstone vitamins but I am told there are better vitamins. Can someone tell me what they are and where I would get them. Also any tips/tricks/ideas you have that would benefit him with behavior, tics I would really appreciate the help. I feel lost right now. Thank-You

My son sucks on his shirts until they are soaked completely down the front, he is also now developed a open/stretching his mouth. He started off 2 years ago with a verbal tic [ excuse me] and a clearing throat tic .. both were gone almost immediately after first round of Antiobiotics ... he also had one where he would adjust his pants - that took longer to go but it is gone. I think we have to watch carefully and monitor them because at any given time I believe the tic can reappear in another form.

I am new to the board and wanted to respond to this .. My son dx with PANDAS in 06 - got Chicken pox's this summer 1 week before school was to begin. He had the pox but no increased itchiness etc.... what was interesting was - since then - he got the 2nd pox vaccine and his behavior - PANDAS has gotten worse - NOT ALL of them but a lot of them. He has been testing negative for strep but I know a round of antibiotics would show a marked improved difference but they won't do it - I have asked to have his titers checked again - they won't do it - I just called again and this time I will push to have it - it is covered and it won't hurt to try it .. but I am interested in the Chicken Pox / PANDAS connection ...

Good Morning - New to this site but excited to see talk on PANDAS. My son is 8 and after Strep in July of 2006 he developed sudden onset of tic, odd, adhd, anxiety, extreme fear .. etc.. After fighting with Dr's I finally had him tested and he tested positive for strep [ again with no symptoms] and extremely high titers. Round of antibiotics and a dramatic difference and relief. However that is as far as we have gotten. My son struggles daily - we are trying a new ADHD med and he has been on Prozac since the initial dx. I do not want him on the prozac anymore I feel it is a negative impact and it making matters worse the Dr refuse to take him off it due to the tics [ 2 verbal that are now gone] .. However my son is really defiant and it is severly impacting school. I also want his titers checked again but they won't do it - I know they are high even if he tests negative for strep. I am also wanting to know more about this Steriod burst and IVIG I am desperate - Especially if PANDAS can be cured by either one - why won't NIMH acknowledge??? I rezlize there are risks but there are risks with everything. In addition to that their studies on IVIG with PANDAS were all successful with amazing results. Can someone help me ? I feel like I am alone fighting for my son and no one will listen. Thank-You