T_Mom

Great find Vickie--Thank you for posting!

I would agree 9 to 11 has been our experience. In our case older d had her WORST OCD PANDAS exacerbation at 10 and a half (though she had an episode 6 months earlier.) Our second d is in the midst of her worst OCD/raging/ticcing episode at just-turned-11, (though she had a lesser episode earlier.)

I agree with Vickie that asking for a month of abx is worth a try--given the two-time changes you have seen, I would certainly think it is worth trying. In our pediatric practice there are about 5 doctors--I found that a change to another person was beneficial--Ibuprofen can help short term for some, but the inflammation needs to be put out.

I am so sorry to hear you are dealing with this--I would definitely try to video tape the movement. Chorea is not always clearly visible to the untrained eye, but if you are reporting "shaking hands" that is DEFINITELY something a neurologist should evaluate, especially if you suspect PANDAS -- I hope you find some answers.

It is not only handwriting that is affected by PANDAS, but also the ability to express oneself in writing (written language.) "Writing" and math abilities are the primary academic subjects parents typically see drop through the floor with Ps episodes. I remember reading about writing ability deterioration w/ PANDAS on Dr K's website (www.webpediatrics.com) over two years ago, and it was like a light bulb went off--THAT was the first, and only place I had seen it referred to--(Thank you Dr K!!) We just came back from a school meeting today -- round two with our youngest d, and again, writing and math abilities are gone-- (Good news, these abilities come back again.) I agree with LLM, keep those writing samples, dated and filed for reference when you need to demonstrate the effects of Ps.

Buster--This is great! and just what I needed to see this evening-- What a stark contrast it is from "normal" OCD to what our kids go-through with "PANDAS/PITAND". Thanks for posting this--(and yes, please pin it under the ol' Helpful Threads! with refs. if possible:) All the best--

I hate to ask but what is meant by a "cross reaction" between (possible) lyme and PANDAS??? Does that mean that you might test positive for lyme when you really only have Ps? In a post by "lyme MD" a doctor who keeps a blog in Maryland on his experience treating lyme, in regards to C6 lyme test he states: "On the other hand, a subset of patients who have been treated extensively with antibiotics "seroconvert" with regard to this parameter." It seems that he is suggesting (?) that some on antibiotics, for a lengthy time period, may have C 6 lyme tests that come back HIGH. (scroll down to Jan. 8th entry on the blog to read.) ??? (...this is way beyond me.) http://lymemd.blogspot.com/2009_01_01_archive.html Can anyone shed any light on that possibility? -- Would that explain why some of us are coming back positive? The reason I ask is that our youngest has been in an episode w/ PANDAS level Cam and lyme testing was positive (C6 Elisa via lyme knowledgeable doctor.) She is now on Doxycycline(200mg) and Augmentin(2000mg) and her volatility is through the roof--constant struggle. OCD, rages, destructive, hitting...failing everything in school.

I would say "yes" as with this latest episode, our oldest daughter has constant intrusive thoughts (swearing against God is what she says.) Intrusive thoughts which she cannot turn off and which she says she gets no rest from all day long. The result is not that she speaks the swear words, but that she is constantly carrying on personal dialogue under her breath in confessing, or trying to say the opposite to her thoughts. It LOOKS and SOUNDS like tourettes at home. At school she controls the utterances, but the intrusive thoughts are present constantly and get in the way of concentration, focus, etc.

I wanted to add that there are wonderful resources at the top of the PANDAS Forum under the posting, "HELPFUL THREADS". These threads are the accumulation of the last couple of years in a summarized form--and provide some excellent information. Also, the www.pandasnetwork.org website has research listings and is a good resource to review. Bottom line: You won't know for sure until you try treating. A month of antibiotics full strength was a very real indicator for us -- as well as the effects of a steroid burst (see www.webpediatrics.com for more info. on Dr K's use of steroid burst.) I wish you the best and I would certainly agree with Hierge that early treatment is priceless.

If you have been through the insurance appeal process for plasmapheresis please contact me, we need help.

Hi T-- I am sorry you are going through this thumb issue now. I do not know if it could be Doxy related, but would be interested to know what you find out. Our youngest is now on Doxycycline. Also on Augmentin. I wanted to ask about your son's reaction--was the pancreatitis due to the Doxy alone or other issues do you think?

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Just read your note Colleen-How is it going? As an aside, we have done a couple of steroid bursts with a neurologist (with extensive experience) and my 125 lb d. was on 40mg a day for the first week, and so on to taper.

I agree with Meg's Mom-- I too read your post Wilma and just did not have the energy to respond... After two long years, with two daughters that have had sudden onset OCD (and mild ticcing w/ one) when they get sick. --yes Wilma, this--is very, horribly REAL. Reading the articles (which tell the history) posted by Buster under "Helpful Threads" at the top of the PANDAS forum, will give you a snap shot of the history. If you have not seen your child change from a normal (relatively sweet child) into one who is raging beyond our comprehension, screaming that OCD is "making me do this--or you will die", yes, Wilma it is all too real. (What kind of OCD goes away with antibiotics? steroids? IVIG?.) I don't try to explain it anymore to even family members who don't get it -- It is just too painful to continue to explain.

Thanks All-- Very interesting. Kayanne, did you mean to say you heard she is not taking new patients? Did you contact her? Situations change of course, maybe she does now-- From her presentations she appears to be quite knowledgeable, not a newbie. Wow! A PANDAS antibiotic treatment protocol actually posted on the internet-- She certainly appears knowledgeable and willing to treat--

Thanks EAMom--Among her numerous YouTube posted clips on PANDAS issues, in one of them she makes reference to Jewish kids (I believe she noted prevalence of OCD--I can't remember exactly.) I found this interesting however, as though my family is not of Jewish descent, my mother in law has dystonia (in her case they think it is a rare Scandinavian type.) Regardless, there is a basal ganglia dystonia that is prevalent in a certain Jewish group. Again, basal ganglia involvement. I wonder if anyone from the forum has seen Dr Susan Schulman?--and I am curious if she has been able to refer for IVIG or pex? She appears to have treated PANDAS and speaks about it in a very knowledgeable fashion on the clips.

Emerson-- There will always be people on here that are happy to hear from you (and never tire of getting your insightful updates) and we are here to support what you are going through--For you too Alyssa. We are all seemingly affected by Ps in different ways--but the common thread is that we have been, or are affected. The support of the forum has been incredible to our family -- Alyssa, update us now and then and let us know how the travels go-- Safe travels--and all the very best.

Does anyone know Dr Susan Schulman? Where is she? She has presented on PANDAS in various youtube clips: --interesting, I wonder if she refers for IVIG or pex?

I would personally give it time--healing and resetting takes time (I am telling myself this at the same time as I write it here!) It can take a number of weeks for the steroids to kick in and settle.

Yes, during episodes when it is bad it can be very bad--but then the storm calms for a short blessed while--until it rages again. Yes.

Yes--Dilated pupils are a common side effect with PANDAS (or PITAND). Please take some time to read through the information at the top of the PANDAS Forum page under "Helpful THREADS" There is a wealth of information on symptoms and treatment effects. What you are describing is very characteristic--and needs attention.

In light of your point Peglem, I want to pick up on the rheumatic fever issue which Colleenrn brought forward-- More then once have I heard that when a child has RF they are subsequently kept on antibiotics into their late teens-early twenties. THIS is important for PANDAS. There is a reason Swedo's work included prophylaxis antibiotics. There is a direct connection with this illness--and for some abx appear to have a regulatory effect (on something!) -- fulfilling a role of more then just "preventative" in nature. We had a well known neurologist in our area tell us that, "no one is perfect" when I told him we just wanted to get our oldest d back to 100%. He thought she had come a long way (and she had, from doctors wanting to admit her to the Hopkins psych. unit, anorexia, etc.)...BUT she was not 100%...We left that doctor and thankfully found someone who said, "We are going to get you back to 100% again." THAT is what a parent needs. Antibiotics appeared to play a critical role in our case, and in the case of many others-- Am I afraid of long term issues, sure. But-- until someone comes up with a better solution there is no other option that will "hold" my d at a functioning level. Clearly this is an issue for us all-- After a year in which we had 4 exacerbations, each time affecting her w/moderate OCD/mild ticcing/ and school failure and with each time antibiotics "took it away"...well, we decided to keep her on full strength antibiotics. She had a wonderful year--until I tried to cut the amount to half and she was (at the same time) exposed to strep. THAT was August and we are still trying to get her back to where she was. This is important.

whew--always good to come home to a quick-paced conversation on the forum-- I am going to throw this in to the abx discussion-- In response to your responses Vickie, what if the real effect of abx is initially (perhaps) to attack the attacker--but THEN it is all anti-inflammatory effects, in other words, full strength, long-term antibiotics are really holding down inflammation? That was definitely the impression we got from Dr Perlmutter (an original Ps researcher) when our d's Pandas symptoms of OCD/ticcing would diminish with Amoxicillan...this happened more then once when Dr Perlmutter was prescribing the antibiotics for us and she clearly indicated (when I called to say could it be possible that the Amxocillan was making the OCD diminish within 48 hours...) She said absolutely -- and mentioned that Amoxicillan had been found to have anti-inflammatory properties and they had determined this at NIH but had never published it. Clearly, the impression we got was that it was the anti-inflammatory effects of the antibiotic that were the benefit. In that case, I hope the white paper is able to reflect the reality that many of us have seen -- that long-term, it is whatever we can get for, "anti-inflammatory insurance" (possibly Swedo's "prophylactic" antibiotics effect for example!) may be the critical KEY to day to day.

Our daughter has not tested positive for strep (that we have "caught")...but with antibiotics and steroids her OCD/ticcing subsided...What often makes the case for PANDAS or PITAND is the response to treatment.

Way to go Vickie! What a wonderful reminder--there is a tremendous amount of work represented there in that short video...let us continue. Thank you-- a great encouragement after a long week.