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Steroids helped my child 's vocal tics, though it took a month. This happened three times. Ivig helped, right? If you think it is autoimmune, then you are probably on the right track.

Where do you live?

steroids have been KEY to my daughters' recoveries. (and yes, they are mostly recovered). One lived at a 10 on the 1-10 scale for over 2 years and was at probably a 7 for 2 years before that. I kid you not. every symptom- raging, incontinence, self-injurious behavior, aggression, no hygiene, paralyzing OCD, hallucinations, ticcing, "chorea-like" movements, lost her ability to read, barely spoke, screamed... boy, I hate even remembering it all! However, today, she is in high school and is relatively normal IT CAN HAPPEN AND IT WILL for you, too. I never believed, when I talked to other "moms whose kids got better" that either their child was as severe as mine and that mine would never get better. But, it happened. Super-duper PANDAS treatments brought her head above water and then intensive residential OCD therapy brought her swimming out of the swamp. do you have a PANDAS doc?

is this the first steroid taper you have done? We did not see improvement until about day 10, and that was fairly consistent for multiple steroid tapers. my 7 yo has seemed much better by the end of the month of steroids. the girls who had pex are older (11 & 13 a time of pex). Do you see a doctor who will consider pex? If you can get it-- DO! One daughter had a massive improvement one week after (big time!) and then slowly got beter over a month. The other daughter showed improvements at about a month. Is he on antibiotics or do you try advil? I was really skeptical of advil and still am, but I do think it works, on a very low level. I am sorry you are going through this. Please do not give up-- this can be such a rough time. See if you can hold tight and just get through this steroid taper, while you work on getting pex!

i would love a copy of this, if you do make a list, I could use some empathy (sympathy?) sometimes. Have you considered presenting this for parents at the OCD conference?-or publishing it in a book or video form? I'd buy it!

My kids had pex. I hate to be a downer, but I think the chance of getting pex for PANDAS is quite slim now. I doubt that an immunodeficiency and pex are no cause for concern. Pex removes the "right here, right now" antibodies, nothing long term. If you had IVIG soon (2-3 weeks) before pex, I think any benefit would be "erased" by the plasmapheresis. One of my children had IVIG 4 months post pex- after an exacerbation that presented as very sudden dramatic anorexia (loss of 12lbs in 2 weeks & it came out of nowhere!) the other had ivig 2 months before pex, when it looked like pex was not going to happen. She is also low in sub classes 1 & 2 IGG (or was about 6 months pre IVIG), not quite 2 SD below normal, but still a bit lower than the low end of the range. We never went to an immunologist and have no immunodeficiency diagnosis. i hope this helps. Pex was wonderful for my girls. Very, very helpful. They were in severe straits. However, it was not permanent and more than anything it was a stepping stone that brought them to a point where they could get into CBT/ERP, which I cannot rave enough about. Each step in this has been part of our journey, all necessary, but no one step got us all the way there.

Excellent point T.Mom! That is it. Who the heck cares who causes this frankly, at this point~ if it is strep or lyme or vaccines or whatever. Our kids (mine at least!) have a clear autoimmune problem that made them nuts. They got immune- modulating treatments and they are BETTER. Much, much better. Someone with some clout please talk about that somewhere!!!!

this is for a technically non-PANDAS kid (well, no official diagnosis yet) T&A for sleep apnea a few weeks ago. tonsils were cultured at my request and came back pos for staph aureus. any comments or info? Is this typical? It was resistant to clindamycin, erythromycin and penicillin. We have PANDAS doc consult in a few weeks, though symptoms have been very minor (or even non-existent) lately(even before T&A). She was given amoxicillin post-op.

Can you try full dose advil for a few days? I was skeptical, but it may help temper this flare. It has helped us in similar situations.

my child is currently on cellcept for PANS. She is (was!) a very severe case- who had several very clear and positive responses to pex and steroids. The cellcept has only been going for a few weeks. I am hopeful it will prevent an exacerbation- of which she had one just at Thanksgiving- with an URI. She had another URI earlier this week and the exacerbation was much smaller- but hard to tell anything (as far as what helps what sometimes with PANDAS.) edited to add: I do know of two other families (one of which is not on the forum at all, I believe) whose children are receiving rituximab and cellcept- not necessarily at the same time!- for PANS. So it is happening-- just not out here on the forum necessarily. It is hard to imagine a PANDAS parent not on the forum but they are out there!

excellent news, dut! I think therapy is way under-utilized in the PANDAS/PANS community. Taking your kid to CBT/ERP therapy is not admitting that your kid is not PANS I think some people feel that way. I did,for sure, at first. I highly recommend that each PANS parent find a therapist who is BTTI trained by the OCD institute.

my 7 yo has this. shocks and buzzes throughout. it is very painful to her. Did Dr L give you any insight ko's mom? I have no idea what to do about it.

There is an increased chance of a certain side effect from IVIG with non-O blood types. This is autoimmune hemolytic anemia. It is really, really rare (my daughter was the only case they had seen of in many years!) It can be serious- and was, but only temporarily. Essentially, her RBC's hemolyzed and she was very symptomatically anemia for many weeks. It required very close monitoring and eventually, the hemolytic process halted and she recovered. You can look up Kawasaki Disease, HD IVIG and autoimmune hemolytic anemia to research more. IVIG is pooled from thousands of donors and along with the good antibodies we are all wanting~ you are going to get some anti-A and anti-B antibodies. edited to add: my daughter is A-

twice we saw improvements at one month. I am sorry you have not seen anything yet. did you have positive response to steroids at all? I am sorry I do not remember.

how is it going so far? side effects? improvement? I will pm you also

I am looking for info on anyone who has tried this immunosupressive (or something like it) for PANS. Thanks. feel free to PM me if you prefer.

we went in March and saw Dr Horng. AWESOME, AWESOME ... I am sure they have dealt with contaminated parents best wishes!

I would strongly recommend ERP. go to a professional or get a what to do when you worry too much by dawn huebner meds are great- but they do not help the kid learn to change their reaction to the anxiety provoking exposure. is he on any psych meds now? will you/he consider acupuncture?

Thanks so much for all the ideas. I gave her 400mg of advil, I will give 600mg tomorrow. I do not know about the gabapentin- she has taken lyrica in the past with some success (albeit for different symptoms!) so maybe that is an area to research. She is only on clomipramine and rilutek- so I need to find out if they all go together ok. tryptophan is a good idea too, thanks LLM. is there a supplement form of that? she mostly will not eat any meat (unless it comes in a chik-fil-a wrapper) though, I might be able to get a little PB in her. steroids have been remarkably helpful in the past. I do not know if it affected her tics or not. I just hate for her to blow-up and gain weight on them. She is a beautiful girl, finally making friends, got contacts, does her hair for school: of course, if she cannot make it to school due to OCD, than I guess it does not matter how she looks! never heard from doc, maybe tomorrow? i do not know really what I expect them to do. Maybe full strength zithro? I have no idea. just grasping a straws..

thanks, philamom. how much advil-- no I did not think of that! she is 14, 150lbs. I donot think I can convince her to take that. but I will try!`````````` edited to add: I just gave her 400mg, is that enough?

what other meds is he on?

my child who was very severe,( I am not exaggerating at all by saying she was room-bound for months!) has come light years down the PANS road. pex, ivig, oral abx, steroids, intensive/residential therapy , the whole nine yards. she has just completed almost one month of school- very small private high school. I feel like we have been managing a house of cards, not knowing when it would crash, though she has been doing pretty well. Well, it is now crashing. she has a cold (not very bad- but a runny nose)- two sisters had a sore throat and fever last week for a day or two. cultured them all for strep (neg) she is on augmentin 1000 xr BID. school is off for holiday, she could in no way attend if it was. tics are increased. Called PANDAS doc to ask for something to prevent the terrifying slide that might be starting. waiting to hear back but not holding my breath~ I already have an appt scheduled next week. anything I can do? her OCD is primarily of the intrusive thought kind, but it is extremely disturbing and she has thoughts about the thoughts. The OCD layers itself and is particularly cruel to her. I do not think I can get her to take anything besides possibly another abx. just prayers and PV's would be appreciated. we have come such a long way and it is being ripped from her.

My child is on Rilutek, another glutamate modulating drug. I think it is helpful

In so far as, there might be a causal component to what we are considering PANDAS (really an autoimmune encephalitis perhaps~ at least in some cases) that has not been recognized yet. (just as the anti-NMDA factor was not recognized a decade or so ago)and down the road, they will say " AHA! that is what was making all those PANDAS kids sick !" My child was tested for this and the testing facility suggested the above to me.

i am listening.. how do i get in the chat room?? HELP!