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Our pediatrician suggested it in Jan 2011 but then we cleared the infection and remained infection free until this fall. I have a call in to him now to talk about where to go from here. Our DO (doctor of osteopathy) ordered an extended GI panel this summer and it indictated moderate levels of pathogenic alpha and gamma hemolytic streptococcus in our son's intestinal tract. We've been using probiotics to reduce those.

I asked our two main doctors about it but neither is familiar or comfortable with this option. I emailed one of the two experts I've read about in PANDAS research and he told me that my kids' FASD complicated matters significantly as it would be difficult to determine "which symptom was caused by what". We have felt very much alone in this.

Thank you for your supportive words, dcmom. We've been through some pretty difficult PANDAS episodes before and I try to be patient but the chronic nature of this with my kids has me feeling rather exhausted. We had 5 positive strep cultures for my son between May 2010 and Jan 2011. He was unable to attend school full days for the entire 2010-2011 school year and police were called 3 times in the spring of 2010 to his school because of his severe raging. Both of our kids are in special education so we've used shortened days, modified schedules, homebound services, etc.. The constant antibiotics are increasing the digestive problems (leaky gut syndrome) and it just feels like we are stuck in a revolving door. A recent test of our daughter's immune system function indicated that she has significant impairment (the results should have been between 400-880 and hers was 87. Our son's was higher but still considered very low.) We are hesitant to use steroids because of past incidents of steroid psychosis. We were doing so well with the nutritional interventions that we started in Feb 2011 and didn't have a strep infection until this fall. Now we've had strep followed by staph. I guess it just hit me harder this time. Thanks for the support, I needed it.

I have two children with PANDAS. They are biological half siblings and we adopted them from the foster care system. Both were prenatally exposed to multiple teratogenic substances during pregnancy, including alcohol. Both are diagnosed with a Fetal Alcohol Spectrum Disorder (FASD) and have significant behavioral and learning differences from the alcohol exposure. A PANDAS episode brings these behaviors to a whole new level. We discovered our 13 year old son's PANDAS when he was 6 years old and our 9 year old daughter had her first episode in the summer of 2010 when she was 8. Our daughter had a positive strep culture about a month ago and the behavioral symptoms (especially separation anxiety, raging and aggression) were quite severe. Thankfully they are subsiding. Because of his susceptibility to strep, we treated our son with antibiotics at the same time even though we didn't culture him. We were off antibiotics for about a week when our son started raging again at school and having "brain stuck" behaviors at home. This is always our signal to test him so we had another throat culture done. It was negative for strep but positive for high levels of staph. Should we be calling this PITANDS instead of PANDAS? Has anyone else had PANDAS type reactions to staph infections? Our children have complex needs because of their co-morbid FASD and PANDAS. The digestive and immune system can be damaged by prenatal exposure to alcohol, although most resources concentrate on the central nervous system damage. We have no one professional who understands the whole picture so we've put together a piecemeal team of professionals, including an osteopath who is working with us on the digestive and immune system issues (using probiotics, supplements and other nutritional interventions). We went gluten and casein free 9 months ago and have experienced some good results but these recent infections have caused me to feel rather defeated. I guess I just needed to check in here to be reminded that we are not alone.

He is on Risperdal for mood regulation, clonidine for sleep issues, and Lamictal for aggression. This combination has worked well to manage some of the symptoms of his FASD. The psychiatrist increased his prescribed dose of Risperdal yesterday. My concern in all of this is that we need to address what is causing the problem, not just cover the symptoms with psychiatric medications. There is very little we can do about the FASD but the PANDAS seems to be another story if we could just find someone to treat him. The psychiatrist suggested cognitive therapy yesterday and I broke down in tears (probably confirming the recommendation in her mind). We've been down the "let's talk about what's going on at home" road before with the FASD so at least it's a familiar one. Sigh. I learned everything I could about FASD in order to advocate for my son and now I'll just have to do the same with PANDAS. Thank you all for your help in this. I did give him Ibuprofen based on what I read here. He tolerates it but it's hard to tell if there is a benefit yet. Again, thank you all. ~Needcoffee

Thank you all so very much for this information. I am making notes and I emailed Dr. K. He replied almost immediately and referred us to the University of MN because of my son's co-morbid FASD. FASD is very complex (see this chart for a look at the overlap between FASD and autism, ODD, RAD, sensory processing, ADHD, Bi-Polar, etc... http://come-over.to/FAS/PDF/OverlappingCharacteristics.pdf). Alcohol is among the most devastating of teratogens as far as brain development is concerned and my two adopted children were exposed to regular binge episodes during their prenatal development. There is also a significant history of mental illness, as well as early life trauma and attachment disruptions. My daughter was exposed to prescription drug abuse and to cocaine and marijuana along with the alcohol. We suspect this with our son as well but we only have confirmation of alcohol and marijuana with him. (Alcohol is actually more damaging than cocaine and marijuana - see Institute of Medicine 1996 report to congress.) I am not sure if my daughter's pneumonias have been mycoplasma but I will look into that. I will also ask about a test for Lyme disease. I never would have considered that possibility, so thank you! I have had to be a strong advocate over the years for my children and I can see that it will continue to be the case. I feel somewhat encouraged by the information and support I have found here, but also discouraged in the fact that my son has TWO conditions that few medical professionals understand. You would be amazed at how much we have had to educate those who have worked with us over the years on the FASD (doctors are massively under-educated and unaware of this spectrum of disorders) and now we add PANDAS to the mix. I had a good old fashioned meltdown this morning but I'm done crying for now and ready to find help for my son. He is a great kid and well worth the effort. Thanks again for the information and support. ~Needcoffee

Thanks for the reply, Colleen. I should have been more clear in saying that the dose was 2 tablets of 250mg each so it was actually 500mg 2x a day. I hadn't heard anything about ibuprofen before so thank you for that information! We haven't tried steroids yet and I am a little leery of doing so because his sister (also adopted into our family, same birth mom but different birth dads) has had steroid psychosis when we've used them for her multiple pneumonias. (I am not a doctor, just a worn out mom so I'll check into this.) Thanks again for the wisdom! ~Needcoffee

We adopted our now 12 year old son from the foster care system. He had been prenatally exposed to alcohol and has been diagnosed with Alcohol Related Neurodevelopmental Disorder (a FASD- Fetal Alcohol Spectrum Disorder). His FASD is permanent brain impairment that manifests in behaviors and these include rages, OCD type behaviors, anxiety, difficulty regulating mood, etc... but he is a great kid who is loving and sweet despite it all. When he was 6 years old we saw a sudden and significant spike in his OCD and anxiety behaviors. Our pediatrician had worked with one other child who had this kind of reaction to strep so he suggested that we run a strep culture. It was positive even though there were no physical symptoms of the illness. Our pediatrician did not know what to call it but he had the wisdom to run the culture and I have always been thankful for that. We had a standing strep culture order after that so we could catch and treat any infections early. Antibiotics worked every time. Until this year. Our son has been in special education and has received behavior support since he started school. Rages were not uncommon but from late April 2010 to mid-May 2010 there were three severe raging episodes at school that required the school staff to call police in order to keep everyone safe. This was not his typical reaction to strep, but I had the mom-sense to ask our pediatrician about the possibility. He doubted it but he ran a culture to appease me. It was positive. Round one of penicillin began at the end of May. It ended in mid-June and on June 22 there was another very violent rage. I asked for a culture to be sure the strep had cleared. It was positive. Round two of penicillin (two 250mg tablets twice a day for 10 days) started on June 26. On July 8 our son raged so violently that we had to take him to the emergency room. He was calm by the time we got there and I asked them to run a strep culture. They ran both a rapid screen and a regular culture and both came back positive. Our pediatrician decided to try another antibiotic and he started Doxycycline Hyclate 100mg for 20 days. Our son took his last dose yesterday and last night he raged for 45 minutes, throwing things, tipping over heavy furniture and charging at people. We did foster care for 16 years and we have parented our two adopted children with FASD for more than a decade so we are used to dealing with behavior issues and raging, but this was scary. We are having him cultured again tomorrow so by Friday we'll know if we were able to clear it this time. My son's cognitive abilities decrease significantly when he escalates. He can't be "reasoned with" and we often just need to ride out the rage and try to keep everyone safe in the process. I view it like I view a seizure. He doesn't want to act like this and he is extremely remorseful and teary-eyed afterwards. We have learned over the years how to co-regulate him and to employ strategies to keep his environment from overwhelming him but what we are dealing with now is almost beyond what we can manage. The basal ganglia in the brain are already affected by his prenatal exposure to alcohol and according to what I've read about PANDAS that area is now under additional attack by his body's immune system. He is on several psychotropic medications to help with the FASD and we are now having to face adding to those. It breaks my heart because all of these problems seem to be medically based. We are in southern Minnesota. Is there anyone in this area that specializes in the treatment PANDAS? We are desperate. My son's life could be at stake. (He has gone out second floor windows and run into traffic during rages.) Thank you in advance for any advice you can offer. ~Needcoffee