shewise

I know this is an old topic, and I hope she is doing much better by now. But I wanted to say that we had an absolutely horrible experience with garlic that I believe set off our last PANS episode. My daughter had food poisoning and H pylori, terrible gastritis. I was desperate to help her so I suggested she eat a little garlic. Bad idea! She ate at least six pickled cloves over two days. She loves them, so she was eating them and I didn't know it. Oh my god, the night of the second day of her eating garlic, she exploded with OCD like we had never seen before. Ordering, jumping, counting to the extreme, which she had none of before. She slept in the bath tub for days, couldn't use the bathroom, wouldn't sleep in her bed, went into rages. It was . It had to be that the garlic opened the barrier and wow, it happened fast. And she had the worst hives, big welts all over her body. That was eight months ago, and she is just now starting to get better. I wouldn't have believed garlic could have that kind of effect, but it had to be.

Thank you for that advice. I think DNA testing is just what we'll do. Digging through posts has made me think she may have Lyme. She got bit about three years ago, but I thought it was ok because I did daily tick checks and found the tick the same day (stuck, though). But now I wonder? She has been fighting H pylori these past eight months, but we mostly have that licked with two months of mastic gum. She refuses any meds or supplements so I have to slip them into her food. Mastic gum wasn't easy with its powerful flavor but ketchup and mustard, raspberry jam are all great. I just don't know what supplements to give her. I've given B12 mostly. I really haven't tried anything else. I am so shell shocked after these past horrible months that I fight daily to keep my cool about what could happen. I just sort of accept the OCD now, compared to the unbelievable horror of rage and opposition that we faced, but I don't want her to get too comfortable with it. It has been toned down though, so that's good. I can't begin to express how it feels to know that there are people who understand and have been through or are going through the same things. It helps so much when you feel like this and are haunted by nightmares and horrifying memories as well as the day-to-day struggle that goes on even when you start to recover. Sure is nice to know that people here understand. We certainly didn't get any help from any medical professionals around here. They insisted on giving her the stool test for H Pylori at the same time as she was taking the Prilosec they ordered (with huge side effects that practically destroyed her). When I told them it would throw a false negative and could she please take the blood test, they told me to consult the Internet less and a real MD more. Of course it came back negative ironically with a note on it from the testing lab that said if the patient is on a PPI, the test could come back falsely negative. We had to order the GI effects test ourselves, which lit up, and then the gastroenterologist scoffed at us for giving her mastic rather than the triple bullet he tried to give her. And then my daughter's regular Nurse Practitioner called CPS because we would not give her Prozac or put her in the juvenile mental ward when she ordered us to. Really helped having to deal with all that in the midst of a huge PANS explosion. CPS dropped it after three months, but the whole thing practically buried us. I've read on these forums about Dr. K's willingness to treat over long distance. I wish I had read that six months ago. I literally felt like there was no one who could possibly help us. I definitely think finding the genetic missing links is the answer. And after reading on these forums, I'm getting her checked for tick-borne illnesses, which not one medical professional has ever suggested in the past year and a half. I want her to sleep in her bed, go to school, go anywhere in the house without being afraid.

I would really appreciate any advice anyone has to offer. My 11-year-old daughter has had two PANS attacks, the first back in November of 2012. That one lasted until April, 2013, and I think was the result of the flu shot. We are just recovering from the second attack, which started in August, 2013. She got food poisoning in July and by August, had a full-blown OCD attack with serious oppositional behavior. The oppositional behavior in the past two months is mostly gone, and a lot of the OCD is gone too, particularly order and placement issues. She still thinks many things are germy and washes her hands often. She seems to have some post traumatic regarding the food poisoning incident, because she won't ride in our car since that is where the food poisoning reaction occurred. We considered IVIG treatment in Chicago, but we couldn't see how we could ever get her there in her condition. We used the wait and see approach, and she is improving now. I plan to get her counseling in the spring with a therapist trained in treating children with PTSD. But I am wondering, is there anything more we should do now? Is there sometime else we should be doing for her? She is completely gluten free for the past year. This past year and a half have been so terrible for her (and us). I don't want her to get any lasting damage or effects because we didn't get her treatment. Any advice is appreciated.