gunillafromsweden

I think it can be interpreted as a neurological tic, the tics in PANDAS often seem to involve more unconcious parts of the nervous system (as opposed to "regular tourettes syndrome", I have severeal friends with "just TS" and their tics are often more handled by will power, even if they often can't resist the will). My son with pandas has been ticking in hickups burps etc, and I think the emptying the bladder thing is also more of a tic.

Just a question... wondering if any of your children has chills as a symptom? I guess chills can be sort of a tics, since I now learned burping and hickups can be tics (my son burped constantly on every breath for a while before treatment, this was at the same time he had lots of choreiform movements).

I not so sure this is correct, there are several autoimmune encephalitis which are associated with different disorders and symptoms, so even if all encephalitis means the brain swells, they are not the same thing. And even if treatment protocoll is similar in most encephalitis, I think it is a good idea to really pin down what type of encephalitis it is, both because the specific symtoms may "make more sense" in certain types of autoimmune encephalitis, and because if the illnes is not actually associated with strep, you can let go of that "strep paranoia" which many of us with children with strep-related disorder have to live with. As I mentioned elsewhere I have a paper on autoimmune encephalitis with the current up-to-date knowledge, written by a researcher and expert. I can share this with anyone who PM_s me their emailadress. It is a document so I can't post it here, and it's not on the web so I can't link to it.

Thankyou for sharing this, my son is chewing his clothes all the time (started with pandas onset), but when I mention this as a symptom our dr says "many children chew on their clothes" it's just that he has never done that before, and now he's chewing his clothes all the time, I mean all the time.

As many of the parents here, I am becoming a amateur researcher, and building a web site in Swedish about PANDAS I am learning so much, as I want my web to be a reource for parent's as well as doctors. Anyway, as I vae read many stories of PANDAS where children suddenly worsen in symtoms, especially when starting on new meds or chaning abx, I thought you might be interested to know that the sudden worsening may be part of the healing process. It is called Jarisch-Herxheimer Reaction, and you can read about it here. http://www.lymediseaseblog.com/jarisch-herxheimer-reaction-lyme-disease/ This means, if I understand it that you should not always think the child can't tolerate the meds or change meds again when you see a sudden worsening. Gunilla

Has she been tested for Anti-NMDA Receptor Encephalitis, and other autoimmune encephalitis? I've read about nausea and drowling/hypersalivating in autoimmune encephalitis. Of course, treatment is the same as for PANDAS, but dr's might be more helpful if they actually know what it is... Also mutism seems to be a specific symptom in some of the encephalitis', but not that common in PANDAS. I have a good scientific report about autoimmune encephalitis, I'm not sure how to share it here though, but if you would pm me your email adress I could email it to you.

I really feel with you, my son had totally different symptoms, but I really understand the crisis you are in. From what I know now you should never do just a short period of abx, so what you need to do now is quickly find a dr who will put her back on abx while you are finding a dr with knowledge of pandas. Actually (hoping this is not against forum rules) abx can be bought online from some countries without prescription, if you can't find a dr willing to prescribe abx right now.). My son's symptoms started March 2, and with abx and IVIG, he is now at least 80% well, but I refuse to take him off abx, as we can see if we just forget one dosis he will start twitching.

Cats can have streps, I as told by my child neurologist. You can test the cat at the veterinary.

I will be coming all the way from Sweden to this symposium. I really need to meet other parents!

It is probably as you say, that people don't talk about it. From the answers here it doesnt seem that uncommon with auditory and visual hallucinations (and Susan Swedo mentions hallucinations among possible symptoms). Also, I would guess, smaller children with PANDAS cant really tell if they are hallucinating, oth becuase of language skills but also because it takes a certain level of cognition and having begun drawing a line between imagination and reality to know that you are hallucinating.

Great film! Is it posted on youtube too? (I would link it from my Swedish website about PANDAS, but it's better to link to youtube since not everyone use Facebook.

Thanks for replies, he is not amoxicillin and the voices started before penicillin, he has heard very distinct voices, telling him he must die or demanding him to do things, so there's no doubt he really heard voices (he could describe them, which gener, age etc ) too. Now post-IVIG he mostöy hears sounds, not voices, but he has visual hallucinations too, not scary though (as the voices).

I live in Sweden, and I would say it is extremely difficult to get dx and treatment here, I am lucky in that I am a well-known professional in the Asperger's field, which means I have lot of friends and contacts who are MD:s and professors in child psyhicatry, child neurology etc, one of my best friend is the most well known expert on OCD in my conutry. YET it was very difficult to get dx and treatment, and I myself is in some post-crisis condition from having to deal with the heallth care system, just imagine what a parent without my connections would be going through! (My best friend followed to see dr's but she is now in research only and has no clinic so she couldnt test, treat etc my son.) Although I am sad to hear your children hallucinates too, I am sort of glad to find someone to share that experience with in here. My son also had paranoia (he thought I was trying to kill him, which just broke my heart), but the paranoia seems gone since IVIG (3 weeks ago). Also his personality changes seems gone and I pray for them to not come back, that was the most difficult part. As it wasn't "him" anymore, I had to use willpower to love him. This sounds awful I know, but he was so different, as if another person had taken his place, was looking out of his eyes, and that broke my heart too, that I couldn't automatically love him as I have always done. If he had stayed that way I hopefully would have learned to love this "new person", but that is the most horrifying experience I have ever had, and just writing about it makes me cry right now...

I cant really se in your post if she is actually throwing up (or just fears doing it). But since my son (dxd with PANDAS) is now considered possibly having an autoimmune encephalitis (there are several forms of those), I just read a report on these conditions, they all may look like PANDAS in symptoms, but one of them is associated with vomiting, it's called "CNS anti-AQP4 autoimmunity", I just thought you might want to check for that one too, when taking tests.

My son 8 y.o. was diagnosed with PANDAS (sudden onset of OCD and then during next two weeks four more psychiatric conditions, along with bedwetting, joint pain and developmental regression, motor difficulties and personality changes), it was devastating to lose him in this way. He has now been treated with abx and IVIG and is much better. But he is still hallucinating (both visual and auditory), though the hallucinations now don't seem to have such a frightening content as initially. I don't hear much about hallucinations in PANDAS and one expert now told me it was rare with auditory hallucinations in PANDAS and that we should test him for an autoimmune encephalitis called autoimmune synaptic encephalitis or Anti-NMDA receptor encephalitis. I will have him tested of course (but we have to wait becuase the IVIG may mess up test results). What are your experiences here? Have your children had hallucinations? What kind? How do you cope with them?