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So glad you got intoDr L and are getting tx. Antibiotics seem to help, abx & steroids help my little ones's tics and anxiety. I am in Northern VA ( there are LOTS of us here on DC metro area) You are on your way toward getting your child better. That is fabulous!

Editing after I reread. It sounds like the augmentin is helping. He had a sudden onset with many PANS symptoms. Are you seeing a PANS specialist? It really sounds like you are on the right track! If it "cleared up" with abx we would not be here It helps and for some it does take care of it- but your son sounds pretty severely affected. It make take time & more intervention.

Too young for the NIH ivig study, right? A sibling with strep would count!

Ditto what dcmom.said about latimer. Keep recording everything..just like you obviously are,it will be invaluable to you. Contact pandasnetwork.org Hang in there!

Just cleared it out!

Hayley, I want to help fundraise in the DC area! Diana is one of my Guardian Angels Pandas network.org is absolutely top-notch and run by completely self-less group of parents. Lets help get them on track!

Rothman is so great. Went there last spring for 3 weeks from Va. Just me & my daughter-- husband came for the last few days. It was rough, but so worth it. However, Dr Storch is right- without motivation, therapy will not work. They mentioned sending us home, since my child would not participate at first. By the end of week one, she got on the wagon and her homework was hard for her, but she gave it her effort. we stayed at the RMH (west, i think- the "house" one not the "hotel" one). We hardly saw staff at all. They were very good about everyone's privacy and staying out of our business. I do not think they will be of any help to you, honestly. If he will not participate and his OCD is really bad. Please consider Rogers Memorial in WI. Excellent place- we also have first-hand experience there. Give it a shot-- a few days in beautiful St Pete's sounds OK to me! We saw Dr Horng for therapy.

I do not necessarily think we (well, me- cannot speak for mommybee) want to hide things. I just want correct information to be given out. If you are going to call it PANDAS- it better fit the definition-- or we are all toast, scientifically speaking. We all use PANDAS here, interchangeably- and we all know what that mean- but to an outsider: PANDAS is specific. If you say PANDAS & there is/was no strep--- you are (in their minds) exaggerating, self-diagnosing, not admitting to mental "illness" whatever. Hence, the creation of PANS-- which I like way better- for obvious reasons-one of my most-affected kids did not have strep. everytime one of us (or other parents) goes to a doctor and says- "my kid has PANDAS" and the doctor is on the fence & your kid does NOT have "real" strep- associated PANDAS- you will drive another doc away or at least lose credibility. That is the crux of this to me. I know no one cares about my little semantic argument-- but I think this is SO SO important.

Something is wrong with my messenger. It won't let me message people. Can anyone help? I tried to delete a whole bunch of messages recently and I thought that would help, but it didn't. The doc is a rheumatologist at rt 50&66. Her last name starts with the last letter of the alphabet. How is that for trying to get around the "not naming docs" rule?? If I can get my messaging sorted out I will get more info to you & nitshel ( who also asked?) Are you in Northern Va? UPDATE: My messenger worked fine from a "real" computer-- just was not working from my phone. go figure Nitshel & MPS1978 I messaged you!

I would point back to my original post. How do we know these are not brain infections???? If you google "brain infection", and just about every other type of viral or bacterial infection, there is so much overlap in so many diseases. Could this all be just one in the same ....... an individual immune response to different etiologies???. I think we do ourselves a disservice when we argue about the semantics and verbage and proof with "Science" of what is wrong. I think the med community does this quite frankly way too much already.....thus the situation pandas is in........... let alone EVERY OTHER mental diagnosis is not even talked about a viral or bacterial infection as a causative agent. Do I really care if Pandas is anti-basal ganglian antibodies attacking the brain and causing neurological inflammation or if it is chronic infection causing wide spread bodily infection? I am sorry, but I don't. I just want my kiddos well and to have the best chance to be healthy and succeed. Nothing more and definitely nothing less. I am not trying to argue, just saying we need to keep it simple and demand better care. I was trying to point out that by definition,PANDAS is autoimmune.. NOT a brain infection. I was not alluding to this boy, when I wrote that "an infection is not the problem here". As a parent of one of the most severe kids affected (from what I have read here), who was brought back from the brink by pex and steroids, the autoimmune component must not be glossed over. I also have little doubt that severe untreated PANS could drive a person to unimaginable acts. I do also agree with you, that these are all individual responses to different etiologies. I honestly think most of here have kids with different, though similar appearing disorders.

Well said ,mommybee! I think I could kiss Dr Bubrick;)

What was the child mind institute article?

I appreciate Beth's efforts. However, PANDAS is not a brain infection. These small slip-ups really have an effect on the medical community. "They" think "we" have not a clue what we are talking about. A brain infection is not the problem here. LaurenK : can you post the link to the article you mentioned?

Pex helped my kids immensely, just not permanent. Ivig was not so obviously helpful.

I messaged to name to both of you, Hayley & bigmighty. tpotter- thanks for asking. I have not been on the forum, due to rigors of just keeping up with life & I did not like the merging of the two forums. I think (dodging virtual tomatoes here!) that alot of our kids have different diseases ( maybe some are lyme, some are PANS and some are something else!) and adding the lyme added another layer that is not pertinent for many people. Honestly, as much I treasure the support this forum gave to me to get me through many, many rough times, I do not recommend the forum anymore to new PANS parents. I am sure they will find it on their own and for a newcomer to this nightmare it could throw you off a cliff! However, I imagine your were asking about my CHILD not me Well, after many kick-butt PANS treatments (pex, multiple IVIG, steroids, abx) and OCD tx (residential therapy and psych meds) she was doing fairly well- in school, mostly happy, minor OCD. It really tanked after about 4 good months and she was back almost to square one. No hygiene, severe coprolalia, paralyzed by OCD, unable to leave the house, incontinence, sleep inversion, suicide attempt, self harm, rage, tics returned with a vengeance... During that terrible time (which started in Feb), she stopped all meds (obviously, they were not working that great, huh??) Finally, we were able to restart the Augmentin XR. About 48 hours later, she began to calm. each day was slightly better than the previous. We restarted the OCD med (at a very low dose) and now- 2 weeks and one day into the restarting of Augmentin and one week on OCD med- I am happy to report that she went out last night with friends, beautiful, smiling and with only minor- moderate OCD. I am now on a quest to figure out how to NEVER have such an exacerbation again . AND I will cling to Augmentin for dear life. We have never seen such a clear cut improvement from it before, however, this would probably be the first time that it was the only change made~~ so I guess it was pretty obvious. Thanks for asking, tpotter!

I am sorry to tie up a thread with this-- but I know someone wanted the name of an integrative LLMD in Fairfax. I do not know who it was on the forum & I cannot find the post. I am not on the forum very much anymore and somehow lost track of the thread/member name. If you would like it, please PM me.

my childs vocal and motor tics always worsened on prednisone, but after the month, they would go away for several months. This has happened three or four times. Also, I took another child to an Integrative medicine/llmd in Fairfax , VA. It was very pricey, many,many supplements. My child, also PANS, did the best at under her care. However, that could be the natural progression of the disease, also. you could p.m. mean for her name if you would like it.

my childs vocal and motor tics always worsened on prednisone, but after the month, they would go away for several months. This has happened three or four times.

my child went to Rogers for 4 months last year. it was wonderful for her and for us also. however, a year later, she is back to square one. sadly, I think the most severe kids with pans may be battling this for a long long time. feel free to PM me for more information.

Heather, I understand your concerns about not hearing back from Dr L. I do not know when you last saw her, but her office staff has some new policies in place and messages are much more likely to be answered than a year or so ago. You can PM me of you want.

What kind of igg levels are considered significantly low? My child total was 691 (14years old) and igg subclass 4 was 5.. I think these are not a big deal, but could they be?

Kimballot- how long after that ivig was that severe flare up? My 15 yo just had flare up, about 11 days later, also requiring hospitalization, she seemed back to her absolute worst. By day 20-21 she seemed much better. We changed meds during the horribke flare, so who knows what did what? An mri at day 19 did show mild sinus disease. She us back on augmentin now.

How has she been doing? Wondering about you for awhile!

Can you change ( or add) abx? Maybe zithromax? I would also consider erp or what to do when my temper flares. Work on it on a good day;) I think some general coping skills and firm, loving parents help alot.