luckyone

It's not always that easy. In my daughter's case she was told she wouldn't get to participate in certain things in medical school, especially hands on experience type things, if she did not get the vax. I agree that there was "bullying" going on. But to say she allowed it is not very fair. She worked very hard to get into medical school and was not wanting to start out at a disadvantage. It is ridiculously competitive as it is. We advised her not to get it but as an adult it was her decision. It had been 13 years since she had been affected by PANDAS so I think she thought it wouldn't happen. She didn't feel like she had a choice.

I wanted to add that I was listening to the Dr. Robert Malone podcast regarding the vaccine. At about 1 hour 39 minutes he talks about the spike proteins crossing the blood brain barrier which can cause inflammation and other problems. It’s interesting since this is what the antibodies do in PANDAS…cross the BBB and cause inflammation. I can’t help but think there is a similarity in the two. I guess in time maybe we will know.

Thanks for your response. My thought on the time between the vaccine and the onset is that antibodies build over time. Her onset possibly occurred when antibodies were at their highest. She did also test positive for micoplasma so that could be a factor. I sure wish we knew for sure. I’ll check on reporting it. Thank you for the info on that!

I don’t post much but am a long time member. I first posted in 2010 over a year after my daughter recovered from a severe 1 year long episode of PANDAS anorexia. That post is still available if you do a search. She was 10 and had overnight sudden onset severe anorexia /OCD. She had high aso titers for almost a year. There were very few people who could help us at the time so it took 3 months to even figure out the issue. She eventually returned to normal almost as suddenly as it came on. She has been great ever since. I posted another update in 2016 when she was starting college. She had no further PANDAS related issues until this year. She rarely was sick (probably because of her over reactive immune system) but we always continued to have her tested for strep even with a slight sore throat. She graduated from college in May of 2020. She was accepted to medical school later in 2020 and started in July of this year (2021). Her school was very pushy with the COVID vaccine which we did not want her to get but she got it anyway because she felt she was going to be prevented from fully participating in everything without the vaccine. I am not anti vax at all. We did delay her 12 y/o vaccines until she was 15 and she got them all separately. I just felt like the COVID vaccine risk vs benefit for her did not warrant it at all. Nevertheless, she received the vaccine in early June. When she started school in July she was loving school! She had met many new friends and was doing great. Fast forward to the last weekend of August, I received a call at 3 am from my daughter. She said for the last 24 hours she has had very severe anxiety and could not sleep at all. She said it started in the middle of the night before so she had not slept in almost 2 days. Things were getting really bad and we had to fly her home. She proceeded to be unable to sleep as well as unable to study. She said she was having trouble concentrating on even simple usually easy tasks. She was completely non functional as a medical student and after a few days took a short term leave from school. Before we even flew her home she had seen a psychiatrist who immediately put her on buspirone and gave her something to help her sleep. She was able to get small blocks of sleep at least but the anxiety was unchanged. She was able to eat but not eating very well. My normally super independent grown daughter was unable to make any decision and she was also frequently coming in my room at night and sleeping on the floor as if she were a child. She was a completely different person and we felt it had to be a PANDAS type situation. Fortunately a lot has changed in 13 years and we were able to get her in with an autoimmune neurology specialist. She typically saw pediatric patients but agreed to see my daughter due to her past history and her current situation. We did extensive blood work. This time the strep was negative. She had a positive monospot test (no recent illnesses) but her Epstein Barr numbers came back negative. She tested positive for both IgG and IgM antibodies for micoplasma (again no recollection of feeling poorly). She was given a course of antibiotics. We weren’t seeing any changes for the better. The buspirone was not seeming to help her anxiety/OCD at all. She said the only difference was she was not experiencing the physical symptoms she was the first week or so like the racing heart rate. The difficult part of this happening to your grown child is that they get to make their medical decisions. She was convinced that this was not autoimmune related and was annoyed I was asking the doctor about the vaccine. She kept blaming herself for everything. It was very hard to watch my typically positive energetic confident daughter turn into a self doubting mess. The doctor wanted to put her on a 5 week course of steroids but she was pushing back saying it would make her gain weight. She was not getting better and started getting pretty depressed. About 8 weeks into this (and 9 pounds lighter) with no improvement she made the difficult decision to take an extended leave from school and she agreed to start the steroid. At the same time, her psychiatrist put her on a low dose antidepressant. Literally a day after starting the steroid I noticed some changes in her mood and she seemed to be doing a little better. She was sleeping better too. She still was definitely having struggles but there was a definite improvement. Some time during about the third week of the steroid she became much better…almost to baseline. It has now been almost another 3 weeks and I feel her demeanor is mostly back to her normal happy self. She is eating well and has put back on a few needed pounds). This was, however, a big blow to her confidence as a medical student. She still believes it might have just been her being stressed but her dad and I know better. She will continue with counseling that we started to help her get her confidence back so she can hopefully return to school as the same caliber student they admitted. We still do not know for sure what caused this to happen after so long. My guess is that it was either the micoplasma or the COVID vaccine or perhaps both. Something turned her monospot positive too but it was not mono. We will be seeing her doctor in another couple of weeks and hopefully get blood work done again. I can tell you one thing is for sure. As they say…”out of abundance of caution” she will not be getting any COVID boosters. I just wanted to reiterate that I’m not antivax. I think the COVID vaccine has saved many lives. I just think that there is a possibility that it could play some role in autoimmunity. We just don’t know the answer yet. Until then everyone has to do that they think is best for their own situation. I just wanted to add my daughter’s story as just another case history.

It has been so long since I have been on here and I don't know who will see this but I felt I needed to post. My daughter had pandas anorexia in 2008 at the age of 10. She was a beautiful normal child until she was stricken with this almost overnight. It lasted a year. I posted her story after she was better. She is now 18 and about to go off to college. She never had any problem again after that horrible 12 months. She graduated number 2 in her class and was a 4 time high school tennis state qualifier. We are so proud of her but are mostly so grateful she returned to her normal self. She is now headed to college with so much ahead of her. We were once told she would be an anorexic forever, but now she is a perfectly normal 18 year old. I know there are others out there with the same problem. With my daughter we managed her anorexia and learned to deal with that until she was better. One day she just got better and has been fine since then. If I had known that, I could have handled it much better. I know there are others out there like her. If you happen to be a parent of one like her, don't lose hope. Trust your instincts, and get the help you need until it passes. I understand there are others that do not follow this pattern of recovery but for some there is complete recovery. My daughter is living proof. I will always be grateful to those who helped her and to God for her recovery.