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Are you going to continue with IVIG at intervals? so glad to hear this great news! Praying it lasts

Santi, I have 2 kids with PANDAS- one has PANDAS to a tee (strep-related onset & exacerbation)OCD and tics only.She had several PANDAS treatments and is doing really well. The other one had no known strep throat (only strep on a stool culture) and the psychiatric diagnosis are varied & severe. She did have positive Lyme & babesia (found a few months after the sudden onset OCD) We did lots of LLMD-prescribed treatments and then moved on the immune system therapies of PANDAS. Things are looking up- it seems. I just want to encourage you that PANDAS (or whatever this entity is) is being recognized as potentially caused or exacerbated by Lyme and other things. I know you did not ask for any advice, I just read your post and wanted to comment.

Hi Santi, do you think your son could have PANDAS? you mentioned facial tics starting and handwriting worsening. Those (along with severe OCD) are kind of hallmark in PANDAS kids. I just wanted to mention that- in case you have not looked into it. Best Wishes. Wilma- have you tried Rilutek? IT seems to help treatment resistant OCD. If you cannot get a doc to prescribe it- there is a study in NIH for it.

how about Dr Jory Goodman? Maybe he can point you in a direction that is helpful - give him an email. I enjoy watching his youtube videos. Check out: Beverly hills shrink (i think that is his website) Is Beverly hills near LA? excuse this east coaster's lack of geography skills

LaurenK- my child did not start out with these symptoms. In fact the schizo-like symptoms came on after 3 months of IV rocephin (about 17 months post PANDAS onset)-- out LLMD warned us that it might get much, much worse during this treatment, but I do not think she even dreamed what would really happen. We are just now (FINALLY!) getting to the "repeat" HD IVIG part of treatment. We have had pex twice and IVIG once. IV steroids, also. you can PM me if you would like more info on how our lyme/babesia tx went. It is hard to say whether the morphing of psych symptoms was going to happen- was it masquerading as PANDAS/LYME; it is a progression of PANDAS/LYME; another type of encephalitis; I cannot say. I have no known family history of schizophrenia. I have another child with clear strep- associated PANDAS (2 major exacerbations) who is one year post-pex and 9 months post IVIG and doing well. So why did this not all work for the other child? I wish I knew. We did not pursue any lyme testing or treatment for the clear-cut strep child. Another thing to point out -- the treatment mentioned by that doctor smartyjones posted about (schizophrenia/toxoplasmosis guy at JHU) artemisia, was given to my child for a positive Babesia WA-1 test. My child was functioning at clearly the best since onset under the care of the LLMD. Artemisia was one of many supplements. Interesting that he mentions that in the article, anyway. hope this helps someone.

thank you for posting this-- very funny, but also, I have never seen this website! perfect... easy to love but &^*^ to raise That about sums it up here!

Hi Ellen, I do not think I have read your posts before-- as I have been on here (under a different name) for only about 2 years. I am going to PM you. I do not have advice, only commiseration. So- if you do not want that-- you can ignore it We are in a very similar situation, with schizophrenic symptoms & lots of pandas & lyme treatments. We started out with OCD only- super severe, overnight onset- that spiraled to so much more. It has been almost 3 1/2 years.

Keep bumping it! I want it, too:) read about nmda. There was I think doctor in southern california who is using cellcept. I read it somewhere! Dr Jory goodman. Beverly hills shrink- he might be some places to research. Sorry for typos I'm on my phone!

Obviously, I do not speak for the entire forum, but I do not think you will find anyone who has used it for PANDAS or whatever this is... You would find kids and adults alike with autoimmune enceph getting some of this stuff, but otherwise, I think that is it. Though many docs think it is the way to go- these drugs are really serious and need some close monitoring. I think the doctors that are little fish swimming against the tide are not up to doing this solo. I cannot say I blame them. To prescribe off-label abx or even neuro/psych meds ( I am thinking rilutek/ namenda.that kind of thing) is one thing, but to prescribe systemic immune modulating drugs is probably not something many of them want to do- without having a rheumatologist who knows about these drugs consulting. We need a PANDAS rheumatologist this is what i have gathered from the conversations with a few different doctors about it.

I just want to second what LLM said- all of it probably. I also think having more than one doctor on the team - multiple PANDAS docs, an LLMD, an integrative medicine, whatever (or ideally a combo of those!)- might really be what you need. We have consulted with Dr T and I will say LLM is accurate in what she said also. We had a positive (CDC+) lyme test at the time, too! Since you asked about the future- I guess it depends on your child's ability to function. I mean, lots and lots of adults live very good lives while being treated for psychiatric symptoms. However, there are some who do not. I have no answer for you, but to say that you are not the only one thinking this. I am imagining I might have an adult child I am supporting down the road. I sure hope not, but we have done so much and though we see improvement, it does not last. OK & after reading MomwithOCDSon-- DITTO. said it so much better than I ever could have even thought it

Awesome!! Thanks for chiming in -- now, if that could be public knowledge Long -term antibiotics really do not seem to help my kids a ton, but they are so helpful to so many people on this forum.

Have you seen the integrative MD since you got the strep test back? Maybe antibiotics are NOT totally out of the question. We saw a great integrative medicine doctor and she was really, really careful with every medicine/supplement she gave. Things were very specific and there was often one thing given and then one or more given to "protect" from the negative effects of the first. It was very complicated, but very effective and precise. It was way more than adding probiotics to abx use. I do not have specific advice for you, except to say that #1: I think you are completely on the right track using a integrative medicine doctor & 2: your kid has PANDAS or PANS or whatever this "thing" is(if it is even a singular entity that is affecting our children). That is something I think is possible, too- that we are all brought together here by similar symptoms- but maybe there is more going on then meets the eye. I reread now that the integrative doc is a psych-- is he doing the supplement prescribing? Do you have an integrative med doctor? we saw a great one in northern VA

smartyjones- are you talking psychologist or psychiatrist--the one you like so much? can you PM me the info? I think we live not too far away. and I could use a good psychologist. We have a psychiatrist I am happy with, I think. finding a good therapist is so darn difficult. I wish FL was not so far. I wish there was something for sick, sick kids that was really good. I guess maybe Rogers Inpt- but hard to know. We are talking to our psych today about partial hospitalization or an intensive outpt here. I think therapy is so important. I wish my kids had not gotten sick so fast and I had been able to get them into therapy before OCD swallowed them whole.

Peglem~ I want your pediatrician! Methotrexate has some serious potential side effects, but I think for those of us who have kids who are so severely sick and chronically so, it is a good avenue. A rheumatologist, neuro & a peds critical care doc all have said (separately) that they think this kind of medicine is what might be the ticket for these kids (and my daughter specifically). The rheumatologist was the only one who was really ready to prescribe it- and she was going to prescribe Enbrel. However, this was right when my child took a turn for the worse (just when i thought it could not get worse) and there was no way to get the injections in her ion the frequency required for starting treatment. We are pursuing other things now and hoping to get her to a better place where we can go back to the rheumatologist. She is not cooperative enough now to go to all the appts and lab draws that will entail. I think this is really exciting and please let us know how this turns out!

it can also be from some kind of trauma-- even an elbow or a basketball to the side- in just the "right" spot- can do it. OUCH! any chance of something like that? Hope it turns out OK!

We saw an excellent integrative medicine/LLMD/rheumatologist who gave this to my daughter. We only got one infusion in before things went so bad that they could even gain IV access. The doctor said that my daughter could have this as often as we could get her in for it. This video is great. Thank you very much for posting it. I think I may head back to that doctor, now that my daughter is cooperative again!

I do not remember being told to keep my kids away from school or out of the community in particular. They do not go to school, however. PANDAS doc was very insistent on checking all my kids for strep and wanted them all treated with Clndamycin & Rifampin. The PANDAS doc did contact my family doc to try to get them all treated in this way- but I never heard a follow up and I let it go. She did place the PANDAS children on clindamycin & rifampin. We were also told by the doctor that IVIG should be followed one month post pex. When to came to actually scheduling it, we were told by scheduler it would be 6 weeks. When I checked at 5 weeks to confirm - we were not even scheduled. So Now we are 8 weeks out and hopefully getting it this week. That is very disappointing to me. We saw improvement at one week for one daughter. We saw improvement for other daughter at 4-5 weeks and it lasted for about 2 weeks. This has happened twice. She is sliding back somewhat now- but we are still no where near square one. Best wishes, NVA mom.

THANK YOU so much for putting this together. Are all these articles linked at pandasnetwork.org? Several of them I never saw! This is such an inspiration to all of us, Vickie. I hope I get to meet you in person some day~ what a great PANDAS advocate you are Is there another PANDAS parent meeting in the works, by chance? Maybe something coinciding with the OCD conference in Chicago next summer?

I thought I was the only one with a "go into depression now" button! Sorry, eljomom lack of sleep increases tics here ALOT, though if she has caught up on her sleep....

philamom, our PANDAS doc was very vague to me. I asked about it on an after-hours phone call & frankly, have not been in off ice since then~ so I do not think it was a priority. I am thinking of heading back to a rheumatologist we have seen before who is also an integrative medicine doc. I will PM you

I know you are not looking for a parent-- but what you asks freaks me out. My daughter at 10 went from normal to institution ready in one flippin' night. PEX x 2 with temporary resolving of symptoms, but relapses. She is positive ANA, increased sed rate, arthritis symptoms; it has been 3 years. I hope you find good answers. If so, let me know. I need some good news. Never had the d8/17 marker checked. Does anyone check this these days? would it do us any good?

meaning false positive? A doctor we recently saw-- not a PANDAS doctor-- but a believer in autoimmune-caused psychiatric conditions--- said that myco. pneumonia is cross reactive-- so the test i sreally worthless-- as it could be a positive to something else. Can someone please explain to me why on earth they bother doing (or even creating a lab test) and calling it one thing & it could test for others, also? If a test is shown to be cross-reactive , why it is even used anymore? just interested...

I think april or so. Where do you live? Also have you tried steroids?

I am interested to hear sbout your son touching everything. The first OCD symptom that exploded for my child was that she had to rub everything anyone else touched. Clothing, skin, papers, door handles, hair, anything. She would do this for over 20 hours a day. She also would go nuts whenever anyone enters her room- screaming, even throwing things. It was like a wild animal protecting their cave. I was unable to empty the dryer; when she heard it buzz and I would go to it- she would scream and chase me because she knew I was touching the clothes. We could never put anything away- she would rage if we touched stuff. It was not contamination- just that whatever we touched something she had to rub. I get chills just hearing the word rub now. She used to yell and cry "I have to rub" over and over. Those were maddening days.

My child took risperdal for over a year and a half. She took abilify in conjunction with Clomipramine. I noticed no difference with the Abilify. Good changes with risperdal-- though she did gain weight. Not as quickly as you described, but she has put on over 40lbs since spring 2010. (so that is pretty fast, I suppose -- She is trying Zyprexa- just today as an adjunct to Zoloft for depression and impulsivity. I am so worried about her weight- this is not good at all. However, Risperdal was good at "organizing their thoughts" that is the way it was described to me and it is a very accurate description. We live on the opposite coast from you-- so I have no ideas.. actually..wait.. How about Dr Jory Goodman? beverly hillls shrink He believes in PANDAS and has so good you-tube videos. Is Beverly Hills near you? CA is a foreign country to me!