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).

The sample size in the Swedo study does seem small, and there do seem to be kids who respond week and kids who don’t. My son had one IVIG at age 12 (had PANDAS probably since he was very little), diagnosed at age 12, antibiotics, steroids, tonsils removed, none of these things helped, then IVIG and about three months later he seemed much better, and six months later I realized I had not worried about him for a long time. So for him IVIG clearly did work, and no improvement with antibiotics did not mean it was not PANDAS. I would be skeptical of the idea that if a month of antibiotics doesn’t work it is not PANS. If that were the case it would be simple and none of these kids would ever need IVIG.

That sounds like a difficult decision. What does your son think? He is the one who will deal with the results of either option. If any ill effects of the IVIG could be stopped by steroids if need be doing the IVIG at the beginning of the summer does sound like a good timeframe.

There is overlap in symptoms for autism and PANS/PANDAS. Some kids are diagnosed with ASD and later with PANS/PANDAS, and when they are treated for PANS/PANDAS the ASD diagnosis no longer applies. Some of the increase in ASD diagnoses may be misdiagnosis of PANS/PANDAS.

Hi. First, it is great that your daughter was diagnosed while she still is very young. My understanding is that the younger the child is at diagnosis, the better the recovery. I think it is difficult to predict how kids respond to IVIG. Even the same kid can respond differently to different times they get IVIG. My son (15) was diagnosed with PANDAS when he was 12. In retrospect he had had symptoms since he was very little. After diagnosis he had a tonsillectomy and two months later IVIG. After his tonsillectomy he got worse: irrational fears, sad, scared, extremely worried about everything. These gradually got better in the weeks following. After the IVIG I did not see immediate effects, but 2-3 months later I noticed he was less anxious, less obsessive, and he said he did not wake up at night anymore. But it was not consistent and I think I also was waiting for the other shoe to drop. At six months I realized I had not worried about him for a while. His main symptoms before IVIG were anxiety, obsessive compulsive tendencies, and he was terrible at math. Towards the end he became obsessed that he was fat (he was not at all) and he started eating less. Since that time he has overall done well. He will get some symptoms whenever he is exposed to something or is getting sick. These have generally gone away after a couple of days. There were two times when they didn’t, and they kept increasing, and at those times he received steroids. Those worked well. I have heard that symptoms go away in reverse order compared to the order in which they started. I did not see that very clearly with my son, although the food concerns went away quickly, but at the same time as anxiety and OC symptoms I think. I think you should expect an increase in symptoms following tonsillectomy. Regarding the school choice, how long can you wait to decide? It would be good if you wait and see how things go before making a decision.

My son had a T&A at the recommendation of Dr L. The tonsils and adenoids can harbor infections. My son's tonsils were enlarged, and he had been complaining of a 'lump' in his throat, and he had difficulty swallowing. He also was on long-term antibiotics and received IVIG two months after the T&A. He had had PANDAS symptoms since he was very little, and he was 12 when he was treated. He is now 14 and so much better. He really is a different kid. I don't know where you live; my son's T&A was done at Georgetown in DC by Dr Harvey, who is very knowledgeable about PANDAS.

I took my son to Dr Latimer in 2016. She diagnosed and treated him she was wonderful.

This does sound like PANDAS to me. My son also told me he wanted to kill himself when he was 5 years old. It was heartbreaking and it made no sense. He also had rages, was anxious, and had a number of other symptoms. He was diagnosed and treated when he was 12. He is now 14 and no longer is anxious, is catching up in math and never thinks about killing himself anymore. He is still on antibiotics because I do not want to take the risk of him getting strep again.

I would say No. To me it seems that the risk far outweighs the benefit.

MomWithOCDSon Thank you so much. It is actually really good news for me because I am getting really worried about permanent damage. So a full recovery of academic skills and now in college is really good to hear. My son is getting very discouraged and still needs so much support, and reading what you did for your son is very helpful. I will tell him your story.

For parents who have a teenage child with PANDAS that was treated, how long do you see cognitive effects? My son was diagnosed when he was 12 after an acute very serious episode, although he clearly had symptoms since he was about 1. He had a T&A and IVIG within 6 months of diagnosis, and has been on antibiotics since diagnosis. He is a different kid: the anxiety, sleep problems and restrictive eating are gone, as well as the OCD. He is now 14. He is a smart kid, but he still has clear working memory problems, and attention problems. His math skills are terrible. He has been at a very supportive Montessori so far, but he needs to go to high school next year but I am afraid he will struggle and fall through the cracks. We applied for a supportive private school but he did horribly on the test so they will probably not accept him. Do these eventually improve? Does working memory improve? Attention? Would he need more IVIG? Any other suggestions?