ejh

MarylandMama thank you for your response. Please do let us know what the neurologist suggests.

Greekdude. I am just reading this now. I hope your son has had treatment in the mean time. Your son sounds like mine. Also anxiety, OCD, sleeping with me, sensory problems, periods of sudden severe separation anxiety, and AN symptoms started at age 11. Diagnosed at age 12 following major strep induced flare. Treated with antibiotics which did not do much, then tonsillectomy and IVIG. After 4-6 months he was a different kid. No more anxiety, OCD, food restriction, sensory problems, sleep problems. He is now 18 and he gets symptoms sometimes with infection but they go away. About once a year they don’t go away and instwad continue to get worse. He then gets high dose iv steroids and that takes care of it. I hope your son has received treatment, if not I do recommend IVIG. They also use rituximab now.

I also am interested in what this test it. And is it part of the whole work up for PANDAS or do they do it based on specific symptoms or patterns?

Tics can also have an infectious origin. Does she have any other symptoms? Frequent urination, sleep problems, mood changes? If so it maybe good to check for an infection. If the source is an infection changing diet will not really help. But as others have said, it can take a while to see effects. And many kids have tics and often they just go away.

wisdom_seeker thanks so much for your response. I have some follow up questions. Did your son get four rounds of high dose IVIG? You mentioned tick-borne infections; how were they diagnosed? My son was diagnosed with PANDAS at age 12 (had had symptoms since he was very little, major strep induced flare at age 12 that led to diagnosis). He had a tonsillectomy and high dose IVIG in the six months after diagnosis. Six months after IVIG I realized I had not worried about him for months. He was a different kid. He is now 18 and he usually gets some symptoms with infection but they go away. About once a year they don’t and they get worse and he gets high dose iv steroids and that takes care of it. He has been in school and is now going off to college in the fall. I am terrified of the vaccine sending him into a massive flare. He has not had flu vaccines or the HPV vaccine for this reason. He did not see an integrative MD and I wonder if he should. You mentioned having steroids ready after vaccination, but that would suppress the immune response to the vaccination. Of course the immune system is at that point responding in the wrong way but I wonder if it would also suppress the immune response the vaccine is meant to trigger- which would make the vaccine without effect. Not sure about this of course. Again, thanks for your response. This is such tricky territory and it is so helpful to hear about your son’s experience. hugs, ejh

Does anyone have experience with the COVID vaccine for kids with PANDAS? My son’s neurologist advised against it based on really bad flares for PANDAS kids after the flu vaccine , and the similarities between the vaccines. I heard about one young adult who ended up in a really bad flare a couple of weeks after the second shot. Steroids did not help. Any other experiences?

I have not used this but am also interested in hearing from others about this.

Hi. I think it is worth looking into PANS/PANDAS. It is hard to say but the symptoms getting better with antibiotics and worse after you are sick suggests there may be an inflammatory component. Good luck

A loose tooth and also dental work can be triggers; anything that activates the immune system can be a trigger. My son (17) was treated with IVIG five years ago and was a different kid after that (no more anxiety, obsessive thoughts, suicidal thoughts, anorexia). But I have noticed that when he is about to get sick (i.e., when his immune system is first activated) he will get some symptoms.

My son seems to have recovered, but like Cmac I am reluctant to conclude this is it. He had symptoms since he was very little, they became very serious when he was 11. He was then diagnosed and put on antibiotics, had a tonsillectomy, received IVIG, and stayed on antibiotics for several years. He is now 16 and doing well.

My son was on antibiotics for several years. He was treated with IVIG and put on prophylactic antibiotics for three years I think. He took probiotics also and his stomach was fine the whole time. I was more worried about what strep exposure would do than about the effects of the antibiotics. I believe there is some evidence that some antibiotics (Augmenting) can reduce anxiety as well.

Yes, intrusive thoughts can be any thoughts really. Kids can have thoughts about hurting themselves or others, about others hurting them, or a variety of other things.

I wonder if CBT would be an option? It can be very helpful to learn some ways to deal with intrusive thoughts. My experience with my son (diagnosed at age 12, now 16) is, like PandasDad said, that OCD/intrusive thoughts are hard to get rid of, so managing them is important.

Bloodwork being normal is not unusual as far as I know. And does not mean that it is not an immune problem. Have you talked to a PANS/PANDAS specialist?

My son was diagnosed and treated at age 12. He is now 16 and does a lot of the things you are describing. I know a lot of other boys who do the same things at this age though. I tend to think it is teenager boy stuff. And maybe boys in their early twenties also (think frat houses and bachelor pads).