kristin0713

My 15yo PANS daughter had both doses of Pfizer in June. She had a very slight increase in anxiety for a few weeks. I am very glad we all got vaccinated, because a member of our household had a breakthrough case and the rest of us did not catch covid. I do think it would have been worse for my DD to get covid rather than the vaccine.

My DD was diagnosed with PANS in February 2017, it was triggered the summer before in 2016 by coxsackie and then influenza in the winter, which was what pushed her over the edge. She presented with the full list of PANS symptoms in 2017 and has recovered I'd say about 90%. Recent bloodwork showed extremely high measles titers - 273. Has anyone else seen this in your PANS/PANDAS child that is NOT on the spectrum? Our ABA therapist, who we hired to help DD work through OCD and anxiety related to PANS, has noticed other behaviors that she sees in children on the spectrum. This was surprising to me because DD hit all developmental milestones appropriately and had very typical language, social, and motor development. My background is special ed and I have always been on the lookout for these things in my children, so it would be very surprising for us to realize an ASD diagnosis for her at 13yo.

My PANS daughter sees Dr. Jyanouchi at St. Peter's in New Brunswick. She's been WONDERFUL and her treatment worked very well for my DD. There is also Dr. Trifiletti in Ramsey.

Yeah I know it's scary, believe me I am distraught over even considering this. I watched my 11yo daughter change from healthy and typical to completely anorexic, withdrawn, plagued by OCD, terrified to leave my side, and having urinary accidents within days of getting the flu. I also watched my son become basically paralyzed and in excruciating pain from myositis as a complication with the flu, needed to have him hospitalized and later transferred to a higher level hospital all while DD was in the thick of her PANS symptoms. I only very selectively vaxed my kids and spread them out. I hate vaccines. We have never done the flu shot. I don't WANT to get them the shot. But now I have my healthy kids back and I want to keep them that way and I don't know what to do.

If your child sees one of the leading PANS/PANDAS doctors, do they recommend the flu shot? I'm not looking for opinions, I want to know the consensus among the leading doctors. My personal opinion has always been NO flu shot. But my daughter's immunologist highly recommends it for her. She is very pro-vaccine to begin with, and influenza was what sent my daughter into full blown PANS symptoms last year. To top it off, my son was hospitalized with complications from influenza (myositis) last year as we were battling DD's PANS. DD's doctor has been amazing and I feel like she has saved her life. She is 98% better I would say. But I am so torn about this flu shot issue. I wonder, what would Dr. Trifiletti or Dr. Latimer say? Or the Stanford doctors?

These replies have been really helpful, thanks.

I messaged both of you. We have an appointment with her next week and I want to make sure we are seeing the correct Dr. J and that she is very thorough??

Hello, I am newly dealing with (I think) PANDAS/PANS in my 11 year old. We have an appointment with Dr. Jyonouchi for March 13th. In the meantime, I don't know how to handle her resistance to doing school work. We have always homeschooled and she is (was) a good student, strong reader and writer, on grade level for math. A few weeks ago, following influenza, she went into a serious depression, was withdrawn, wouldn't eat, and exhibited all sort of bizarre OCD behaviors and tics. She has mostly come out of that but is still showing some lingering OCD behaviors such as getting upset that I sharpened all the pencils, not able to choose a writing instrument, not able to choose a subject to work on or refusing to do any work. She had been more difficult this fall than in any prior year of homeschooling but I attributed that to adolescent attitiude before this extreme episode happened following the flu. Now I am not sure what is attitude and what is really hard for her or distressing her. Before she was sick, she would have read all day if I let her. Now she will barely read. She finished a typing program in the fall and is an excellent typer. Now she will not touch the computer. This is a huge regression from where she was in her independence with schoolwork. I don't know how to handle it. Do I sit next to her and do everything with her all day?? Or let her do less work/no work? It seems absurd when her third grade brother, at the other side of the table, is working through very subject one by one on his own. I just don't know what to do. I think it goes without saying, but I will say it anyway to prevent the suggestion--I am NOT sending her to school. That would be extrememly traumatic to her at this point in her life especially with the PANDAS stuff going on. I need strategies to get her back to independence, or hope that this will not last forever.