zazuk2010

I am so sorry you are going thru this. I remember the beginning when I could not get anyone including my husband to believe me. We saw every specialist and they each told us something different....transiant tics, tourretts, even an ocular migrane (that had lasted 5 weeks at that time???) Then several weeks later my sons twin brother started having horrible tantrums and pulling at his eyes. I called the nurologist that we had just seen weeks before who had told me it was imagination (mine and my sons) and she acctually told me that the only thing she could think of that could cause such sudden extreme behavioral changes in two 5 year olds was that they must be being molested!!! (and she was the first woman ever to graduate from Harvard Medical School) A friend suggested I get them tested for strep. Their ASO's were both high. But all the other titers were normal range. We were lucky in that our ped was open enough to read things I gave him and to try the antibiotics. Started with Amoxicillian (I am sure I must be spelling that wrong) and it worked some. Then we switched to Augmentin and there were much better results. If you look on Diane's site www.pandasnetwork.org you can look thru the case studies and see that some kids did not have elevated titers. Sadly, my son finally had a raging tantrum in the bath tub where my husband had to climb in a pull him out kicking and screaming and punching and biting before he was willing to believe me and not the "specialists" . Since then he has been on board with me 100%. Stick with what you know in your gut. No one knows what is going on better than you. I recently interviewed a psychologist for both my boys. I was there no more than 5 minutes when he informed me that there was no such thing as PANDAS. Much to his surprise I stood up and told him I was not going to let him waste one more minute of my time, and I left. I also interviewed another pediatrician (closer to our house) for regular every day sort of things and he informed me that he would have no interest in having us as patients if we were working with any other doctors.....oh and p.s. he believed in PANDAS, but said he would not perscribe antibiotics for my kids and would not entertain the idea of IVIG because not enough "experts" have come out to say it makes any difference. Hang in there.....I am sure most people on here can relate to how frustrated you feel. Vent all you want. We are listening. Warmest wishes, Kari

My son does not have a raspy voice all the time, but when he becomes what I now refer to in my head as the "excorsist" and has one of his raging episodes his voice changes into a raspy voice. That is one of the ways I am able to tell the difference between a PANDAS tantrum and a regular 5 year old tantrum. Kari

Hi, we live in California and began our relationship with Dr. Kovacevic (www.webpediatrics.com) over the phone (he is in Chigago). Our pediatrition did not really know anything about PANDAS, but was willling to read info I gave him and then follow Dr. K's lead with regard to perscirptions etc. We also were able to work with a doctor at children's hosptial LA to get IVIG even though it was understood that our "main" doctor was in Chicago. FYI- the reason I think things went so smoothly at Childrens Hospital was that we saw a doctor there who worked in the out-patient Immunology/alergy clinic. He was not willing to "diagnose" PANDAS for us but explained that their department was mainly made up of technitions who followed the lead of other doctors and implimented IVIG protocols. Hope that helps some. Best, Kari

Hi Kathy, been meaning to get back to you. Will send a note but wanted to post here re Chicken Pox. My boys were fine on their 5th birthday checkup. Gave them the Chicken Pox vacination at that time. 5 weeks later they started showing symptoms of PANDAS. No other sign of strep infection. I was schocked when their ASO's were high. I will forever believe there was a connection between the Chicken Pox vacine and the boys PANDAS. Even our pediatrician (who has argued with me regrading vacinations in general for the last 5 years) admitted that it was very possible that there was a connection. Perhaps it was a weakend immune system due to the shot or perhaps it was the combination of the live vacine and a mild strep that worked together to cause this nightmare. All I can say is that my kids are done having any more vacines! Kari

I'm new to the board and I appreciate all the information I have accumulated from here. After reading so much about the swine flu being posted , I felt I must post. My son was a healthy, well balanced 13 yr old boy until he contracted the swine flu in late August.He went from a straight A student to not being able to write or read, in a matter of 48 hours. His pediatrician said OCD and here is your Zoloft. After much research and numerous doctors , we have received a diagnosis of PITANDS. BriCanady,I'm not sure I'm understanding your post. Are you saying that "contracting" the swine flu is what started the PANDAS/PITANDS episode for your son? what are his symtoms? could you explain more? At 13, he never had any tics, ocd, or other issues? Forgive me, but what made the doctor assume PITANDS,-- "not able to read or write? It sounds as tho he was affected by the illness. Is he recovered from that episode, or is this ongoing? How are they treating him? so sorry, I'd really like to know more. Are you then FOR vaccine, or against? I think either way is probably risky, but for those of us who already have the immune or neurological problems, we don't want to add fuel to the fire, you know? Faith Hi, two things. We live in California and I believe there is a law that says that you can not be forced to get vacinated but if you are not vacinated you must sign a waiver at the school stating that you are choosing not to vacinate your child. Not sure if this is a state law or a federal law. Second, with regards to Candy's post, both my twins were fine at their 5th birthday checkup last May. They both got the Chicken Pox vacination at that time. 5 weeks later, with no signs of any sickness they began having tics and OCD and wild raging episodes. Diagnosed with Pandas shortly after that. Blood tests showed slightly elevated ASO no other titers elevated. Responded well to antibiotics, but not enough. We just did IVIG this past week...waiting now. I will always believe that the Chicken Pox vacination played a part in all this. Pehaps only to weaken their immune system or perhaps the chicken pox (live virus) worked together with a minor strep infection to cause PANDAS. Either way.....we wil not be doing any more vacinations from now on! I signed the wavier at our school (not that they have been able to attend school yet this year due to PANDAS) . I will try to find out if this is a state or federal law and let you all know. Kari

We just did IVIG with our Twin boys with PANDAS. I know I should be patient and give it time to work, but that is proving difficult. Things seemed a little better starting yesterday. It was the first night in months that one of our sons did not have a raging tantrum. Getting thru today without a problem until we went for ice cream. Almost immediatly my son began a tantrum that lasted over an hour. Wondering if the sugar or yeast could be making this worse. Has anyone noticed a significat difference directly after thier child has eated sugar? Kari

Yes, I am not a theripist just another parent dealing with all of this. I was thinking that if there is interest, I know something about setting up a web site and I could put together something that would alllow parents to connect with each other in different areas. People can there share local resources and find comfort in knowing there are people nearby that really understand what they are going thru. Any thoughts about this idea? ??? Kari

I live in Los Angeles. I have twin 5 year old boys with PANDAS. If there is anyone who lives in LA who would be interesed in forming a local "in person" PANDAS support group with me please let me know and I will find us a place to meet. Best, Kari

Hi, both my boys (5 year old twins..both have PANDAS) have been on Augmentin for 3 months now. We have been giving them FloraStor. They have a kids version, but we gave the adult and it has been working wonderfully. We break one capsule and mix it with peanut butter along with the Augmentin tablet for each child. I will warn you though, Florastor is expensive and there may be something else less expensive that can work just as well. good luck. Kari

Hi, I am new here also. Both my 5 year old twin boys have PANDAS. They showed symptoms within two weeks of each other starting last May. It has been a roller coaster ride ever since. Both boys presented with completely different behavior changes. One had extreme facial tics, saw a big black ball in his eye, was uncharacteristically hyper and suddenly was afraid of many things such as planes crashing into our house, fires, getting locked in somewhere etc.. The other began having raging tantrums brought on by any small disappointment such as getting only one cookie instead of two. He also had eye disturbances and was often pulling at his eyelids. Both boys have issues with separation anxiety. They have been on Augmentin since June. They both responded well although the behaviors continue with less severity. We just finished a 5 day course of steroids. Things seem marginally better, but not gone. I am curious to know how you "repeat" when your son is having a tantrum. I have noticed that my son is not as out of control of his behavior as I first thought. It is almost impossible to get thru to him when he is in the middle of an "episode", but it seems that when he decides it is over, he is suddenly his normal self. Sometimes I am able to say something that strikes a cord with him and he is done. Can you give me an example sentence so I can understand exactly what you mean. I would like to try it. Thanks so much. Kari