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It sounds like PANDAS. Especially the fact that she is very well behaved with others. My son is now 13 and was that way as well. Friends thought it was me because he would have really long tantrums and get extremely angry but only with me. People often think that means it is a matter of parenting, but think of how people who are very depressed often hold it together at work or in school. No one there suspects a thing. My son was diagnosed a year and a half ago. He had PANDAS for many years (including rage when he was little, a period of severe separation anxiety when he was 8, intrusive thoughts, anxiety, serious problems in math and other cognitive problems, etc). He was treated with antibiotics, tonsillectomy, and then IVIG. It has led to a remarkable improvement. In retrospect, I so wish I had known he needed he needed treatment when he was little. It would have prevented a lot of misery for him and for me.

It sounds like PANDAS/PANS to me. My son had a PANDAS episode following a strep infection and his pediatrician diagnosed PANDAS and prescribed antibiotics. The day after the antibiotics were finished my son had another episode. I took him back to the pediatrician who swabbed his throat and then said it was negative so it was no longer PANDAS but a psychiatric disorder and he needed to see a psychiatrist. Fortunately I happened to know about PANDAS so I ignored him and took my son to a pediatrician who is knowledgeable about PANDAS. He prescribed longer-term antibiotics and steroids and recommended further treatment (tonsillectomy and IVIG). It is now a year later and my son is doing so much better. Pediatricians often don't know enough about PANDAS/PANS unfortunately.

We had to pay up front. I am trying to get our insurance to cover it.

Yes! I am going.

I agree with what has been said. I also think at least some kids that are being diagnosed with autism actually have PANS/PANDAS. My son was diagnosed last year at age 12. He had not been severely affected until last fall but in retrospect clearly had his first episode at a really young age and had chronic symptoms (anxiety, serious problems with math, OCD, and around age 11 beginning anorexia-like symptoms) almost his whole life. He

We are in Maryland also and see Dr Latimer in DC. She is very knowledgeable. I think it is really portably to not just get a therapist/psychiatrist but to get any infections treated by a knowledgeable doctor.

Yes that does sound like PANDAS. I would contact a doctor with experience with PANDAS and get treatment asap.

I am sorry about how hard things have been for your family. I just want to say I completely agree with llm. This absolutely sounds like PANDAS/PANS. I also agree that the best thing is to work with someone with experience in treating PANDAS/PANS, and the sooner you do, the sooner you will have treatment.

Recovery is rough. My son is 12 and had his tonsils and adenoids removed last fall. Lots of pain and difficulty swallowing for the first five days. After a week he was OK, but it took 10 days to really recover. Staying hydrated is really important in general and for recovery. Make sure you use the pain medication because if it hurts to swallow it is hard to stay hydrated. Good luck!

I agree with Worriedmom1 that what you describe are very typical PANDAS symptoms. My advice is also to find a PANDAS doctor asap. The sooner your son gets the right treatment the better. Where are you located? We see Dr Latimer in DC. She is very knowledgeable. Regarding how to talk to your child, I think it is important to tell him that it is not him, and he will get treatment from a good doctor and he will be fine. Other than that it probably depends on what he is concerned about. I think it is really important to find a PANDAS doctor and start treatment. In the mean time, ibuprofen can help some symptoms because it reduces brain inflammation.

Thanks! He is not taking probiotics yet, I am trying to figure out what to give him. And I like the suggestion about the bread. The only thing I worry about is if I tell him it will help and it does not he will be even more worried about it. But the feeding restricting is scary so I will try it.

My DS12 was diagnosed with PANDAS two months ago. His tonsils and adenoids were removed 9 days ago. He has been taking Augmentin for about 8 weeks now. He has been getting really painful stomach cramps for the last week. I read this can be a PANDAS symptom, and the antibiotics can cause stomach problems as well. Are there things he can eat or drink that would help? He is now thinking it is because he eats and I need to counter that because affer his last episode he was afraid eating would make him throw up. Any advice?

I would find a different doctor. Dr. Baig in Edgewater is knowledgeable about PANDAS. He does not diagnose it without evidence I think (not sure if you are concerned about that). We saw him recently when our pediatrician did not want to do anything because throat swab was negative. Dr. Baig ordered blood titers and antibodies were very elevated, he then prescribed antibiotics. CBT can also help, whether it is PANDAS or not. My son got CBT when he was in Kindergarten (and before I knew it was PANDAS) and it helped him. Good luck!

Thanks to both of you! Very helpful because this is not easy to navigate.

Hi, I am rather new to this. My son (12) was recently diagnosed with PANDAS and is on antibiotics, next week he will have a tonsillectomy. I just learned strep is going around at his school. No one in his class, but some cases in lower classes. Should he stay home from school until no more cases? He is on antibiotics but I am not sure if it can still trigger symptoms. Any advice? Thanks!

Hi, I just found this forum and am so glad. My son is 12 and was diagnosed with PANDAS by our pediatrician several weeks ago. He was diagnosed after an episode of extreme symptoms on day 3 of strep infection. He had an epsiode in Kindergarten (suddenly obsessive-compulsive about fear of throwing up, and developed vocal tic - I had just had strep and he was sick also but no strep test for him) and one 2 years ago (sudden intense separation anxiety), but this last one was much worse and downright scary. We went to Dr. Baig (MD) and he said my son's glands were enlarged and he wrote on a form 'tonsils abnormal'. He prescribed amoxicyllin pot clavu and prednisone for 10 days, and he had blood drawn to measure strep antibodies before medication started. We will go back next week. In the mean time, I have two questions and would appreciate any input you have based on your experience: 1. I see mentions of good quality probiotics in many posts, and wonder what they are. Do people use milk, yogurt or kefir products with probiotics, or are they not helpful? Or probiotic formulations, and how do I know which ones are good? 2. My son is currently on antibiotics but only for 10 days. When he stops taking the antibiotics, what can I do to reduce the risk of another strep infection? I know some kids take prophylactic antibiotics. Does anyone give antibiotics only when the child has been exposed to strep? Are there other things people do? Thanks, Elisabeth