T_Mom

Hi Mia'sMom-- while your un-kindly doctor is somewhat correct that Augmentin is "Amox. +", it is not necessarily the truth that Augmentin then is better-- I do not know why, but for our d the Amoxicillan worked for a long time (year +) -- while Augmentin did not seem to have the same effect...timing, etc.? I don't know, but if I were you, I'd find another doctor willing to prescribe to TRY amox. again--

love this discussion -- especially given that it is mid-October! Me-Mom, I watched your whole video and could hear your "Mom's" voice coming through loud and clear--What a terribly scary time you have had. I hope so that you are right! We have not seen this clear of a connection with food issues for our two Ps girls. --though I must share that it was the week after Halloween, four years ago, that both of them first started having "odd" behaviors so I found your observation interesting--I do think foods can affect behaviors, but not to the PANS/PANDAS/PITAND extremes. Thanks for sharing your thoughts though, and if Ps comes back there are additional options.

I am so sorry -- this must be very frightening. Your son obviously must have a number of doctors, you mentioned he is on 24 medications -- ARE these all being coordinated by one doctor? Jtsmama, you mentioned he has a number of symptoms, "severe tics, OCD..anxiety,,,,intrusive thoughts" -- Have any of these been 'lessened' by treatments in the past? Did this give you any clues as to what is the root causation? Have you seen any positive effects from the Biaxin? -- or from any of the medications? What diagnoses have been made, and by whom? Have you had him seen by an infectious disease doctor at any time? I think these would be the questions I would be asking myself. I hope you can find someone with insight into your dear son's situation very soon. All the best.

I pm'd you instead

Thanks for the GREAT notes!!! I wish I could have been there.

http://www.authorstream.com/Presentation/kylai23-378264-encephalitis-lethargica-h1n1-2009-human-swine-influenza-china-education-ppt-powerpoint/ This was originally posted in another thread by PowPow-- I wanted to highlight this as it is very interesting re; basalganglia inflammation and the various ways it manifests -- including PANDAS!!! (slide summary is at the end.) H1N1 related issues -- (HongKong/China, Queen Elizabeth Hospital)

This clip is hysterical--I wonder if Frankel and Kershenbaum (the law office that put that clip on YouTube) would consider representing a bunch of us with our insurance woes!

Nancy--You are amazing-- Thank you for pulling these threads together re: possible reasons that antibiotics are affecting the OCD issues. Let's hope that there is (someday) a large scale study to prove the point that antibiotics may have a positive effect on OCD. So then, along that same line, does anyone know: if a child has "Pitand" issues, no strep, but OCD/perseverations that appear when they are exposed to illness (even illness in others, especially strep!)...then would or why might IVIG or pex work??? Would immunomodulating treatments (IVIG or PEX) still hold "promise" of resetting the system (so to speak) if the root cause is glutamate issues??? Help!

Hi HTsMom-- Any word from your neighbor? Thanks--

This is really great JDude! Thank you, thank you-- The more publicity Ps gets the more chance that families with affected children will begin to get the help their children need--thank you.

Norcal--THANK YOU for taking these questions forward--you have articulated some that many are wondering about. Piggy-backing on what cynilinntk said above, I wonder if those presenting at the TX conference have an opinion as to the preference of using IVIG or Pheresis -- WHICH one do they consider more beneficial for long term healing and is one preferable to another or is it just that the "availability" of the treatments is resulting in these being done??? --and is one better for PANDAS vs. PITAND? If you get a chance, can you please ask Dr Swedo directly as it has always seemed she thought pheresis was more long-lasting, while Dr K seems to think the opposite...maybe: Which one is preferable and WHY?-- Thank you--

Yes, our second d had OCD/ticcing episodes w/ strep exposure. These then morphed into severe ODD behaviors--so severe it was difficult to fathom she was the same child. The ODD did not show up until year 3 of the "episodes". IVIG helped tremendously. (Constant azithro too.)

Hi DCMom, Good suggestions by our resident OT tpotter ! DCMom, if you are concerned about "written expression" as well as "handwriting/letter formation" now is the time to ask for an evaluation in both areas -- A note to the school counselor, making a formal parent request for special education testing in the areas of written expression/writing ability as well as OT issues related to handwriting should get you an evaluation in both areas. At least a review. If it was me, I would tell them you are concerned that there are complications left behind as a result of the neuro-psych. after-effects of PANDAS episodes. Whether or not this is due to missed school time due to illness, or physical residual issues, it does not matter. What you want assurance of is that their writing and written-language abilities are on-grade-level and/or equivalent with their ability levels. Keep us posted!

Thanks again for the info. -- Karen, may I ask who your Ps doctor is? You can PM me if you like, I am curious -- and what is a DO? Thanks again--

Hi Artlover, At the top of the PANDAS forum page is a "Helpful Topics" thread...click on it and in there is a thread dedicated to parents listing the doctors that they have seen who have helped with PANDAS. There are only a few who may be actively willing to treat (if necessary) with IVIG after antibiotics, and possibly steroids... Definitely worth trying (in my opinion.) Trich and skin picking have been linked w/ PANDAS as possible symptoms, ask, ask, ask...Please do come back and let us know what you decide to do and how it turns out! All the best to you--

Thanks everyone for the responses--interesting to read. Could it be that the Tonsils and adenoids do something else, or "hold"-- or filter something other then strep??? -- In other words, if the tonsils act as filtering agents, could it be that their function is critical somehow, or gone awry in Ps kids? This is total speculation:) My girls have never had a "tested" strep. Though they get sore throats, and react otherwise as Ps. IF T/A were possibly contributing agents, or malfunctioning in these kids???.... sigh.

OK, this 'opinion statement' by Jory Goodman M.D. was posted in an earlier thread by Alex...and I just read it. WOW! This psych. obviously has an opinion on the history of the "political conflict" involving the various researchers...and is not afraid to say it. I think this is well worth the read, if only because it is interesting! He believes that tonsil/adenoids are a key issue!!! --and says this is recognized internationally. Do you think this could be the KEY to quelling Pandas reactions? Has anyone had this effect? http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain ...here is a quote from the article: "...P.A.N.D.A.S. was first identified in the late 20th century. The literature internationally has grown exponentially over the past decade. This is a formally acknowledged disorder in virtually every country with modern medicine, from Finland to New Zealand, Japan, Western Europe, South America, you name it. It remains "controversial" in the United States for political reasons. The two primary political reasons are firstly that the crowd at Harvard and Johns Hopkins bristle at the notion that someone other than they discovered something in vigorously denied the existence of this until about 2006 when Harvard tried to claim that they discovered it to the vast amusement of the world medical community. Secondly, the NIH has been slow to formally acknowledge it and continues to keep it "under investigation" because of pressure from the insurance industry. Since the international recommendation for the treatment of P.A.N.D.A.S. is tonsillectomy it should come as no shock to anyone that the insurance industry in the United States is not eager to have a mandate imposed that would return us to a time when tonsillectomy became rather routine as opposed to exceptional. But I have myself out of order here so let me get back on track...." (I recommend reading his entire opinion!)

Thank you HTsMom, Would you be able to ask Christina Teague the following for me? First, please THANK her for sharing her story so others might learn, and in the Washington Post! Wonderful!!! 1. Would she possibly be willing to sign onto the forum and give us her summary (so much can be left out in the media.) Info. re: the history of symptoms and treatments for the 2 to 3 years? Particularly, did he ever have a positive strep test, the course of treatments that were tried along the way. My BIG question is about the tonsil/adnoids removal. From the article it is presented as the possible "cure" -- as if that was what Dr Elia prescribed as the remedy. Does Christina think that is Dr Elia's perspective, or was this an "after-thought" -- just an idea? Do others doctors think this is KEY? Could this be KEY? ... now that would be something wouldn't it! (one can only wish it was that simple.) Thanks HTs Mom--give her a big hug from all of us.

Wendy, you have not offended me, but I wanted to add the specifics of the Post article to clarify-- That article is all about the fact that PANDAS is a very difficult diagnosis to make, not clear cut at all. From the article: "Elia, who saw Will in March of 2009, said her diagnosis was based largely on Will's history. His age; the sudden onset of his obsessions; the improvement after antibiotics; the repetitive sniffing, which was actually a tic; and the lack of any other credible explanation for his behavior were characteristic of....PANDAS..." Will started in Nov 2007...and "the intensity of Will's problems seemed to wax and wane but never disappeared entirely..." for well over a year. They did not see Dr. Elia until March 2009. Nowhere in the article does it ever say that Will tested positive for strep. In fact, the author carefully states: "After a second visit, the doctor determined that Will might have strep throat and prescribed a 10-day course of amoxicillan." If I remember correctly, in an earlier post you said that your dd went two years w/ no doctor visits and during that time she had temperatures as high as 104 degrees -- and then the symptoms started. Whether it is lyme, Pitand, etc...I want to encourage you to keep asking the good questions you have--You are obviously a dedicated mother, you can and will get help for this, keep seeking the answers, all the best to you.

Hi Eljomom--Your honesty has obviously hit a nerve. Most of us on this forum have been where you are -- worried about treating, worried about not treating-- The article in the Washington Post today is a good example of one family whose "path" to recovery was not clear cut. Most of the families on here could say the same. Your situation is no different--and I understand your fear. (fyi--My kids have never had a pos. strep test that we have "caught"...BUT OCD and mild ticcing occur when they are exposed to illness in others--especially, but not exclusively strep.) They are REACTIVE and once that reaction is set-up it is like sledding downhill. Do you think, given your family history, that your family genetics may pre-dispose your child to an autoimmune reaction flair that results in OCD/ticcing (ie, the PANDAS paradigm)? Given that Dr L is a very well respected mainstream pediatric neurologist your concerns re: steroid use should be discussed with her directly. We were in a similar situation and I can tell you a lyme specialist reviewed my d's case, tested for lyme and determined she had been infected, put her on Doxycycline and then said OK to trying steroids. re: your dear husband, I am sure this is tough on him too, and he may never be fully "on board." Be sure he goes to all appts. Video tape your child for the doctors to see and ask your husband if it is really OK with him to leave her as she is? Dr. K asked me to imagine my d's life at 20 with the same symptoms, and would we be OK with that? Good question. You have a child that is obviously struggling and whether it is tourettes syndrome only, or PANDAS triggered, I hope you find the strength to keep trying to help her.

This is GREAT! -- I thank you for posting and I wish I could go. Would someone attending please ask this panel of experts what can be done to ensure that parents are able get the immunomodulating therapies, recommended by NIH and others, covered by INSURANCE???

Hi--I am so, so sorry to read your post. You need to know that many, many Pandas kids will not "test" positive for strep via a throat swab. (Our d had sinusitis show up on an MRI -- we believe that may have been where the strep was hiding.) Our own d had sudden psychological changes too and some OCD issues that remind me of your experience (for example she thought that poison had splashed up from outside the car and gotten into her mouth, etc. etc. it morphed into some very creative situations.) If I were you, and was in the midst of what you are experiencing right now, I would do everything I could to be sure my son was safe (not going to hurt himself or others) and then I would get him to one of the Pandas MDs that are diagnosing and treating Pandas with success -- for their advice. In the meantime, some of the best advice I ever received was to TRY a 30 day trial of full-strength antibiotics for my d. We did and it made a difference, almost immediately. Can you get that from your pediatrician, and/or ask your pediatrician to call a Pandas treating doctor to consult? Dr. L, Dr. B, two that many see. Here is the link to a list of doctors parents have seen: http://www.latitudes.org/forums/index.php?showtopic=5023 Check out the information on: www.pandasnetwork.org -- alot of useful information there. Take care and be safe, if it is Pandas it can get better with treatment.

Hi Burnell (posted this in a different thread and moving it here)-- I am sorry to hear of the ups and downs your dd has had post-infusion. (Do you know for sure that she got the IVIG in the study???) I would be curious as to what you are thinking about doing next? Will NIH keep following you? -- would you mind sharing how NIH is following the kids post-infusion? Do they do weekly "check-ins" or are parents completing behavior rating scales, and for how long post-infusion? What constitutes "success" of IVIG ...changes at 6 month changes, one year? Who would you say is treating/following your dd now? NIH, Dr. T, or Dr. M.? I would guess it is not a Pandas treating doctor recommending the psych drugs at this time -- Have you decided Pandas is not the real issue? My dd (almost 12) had IVIG in May too (not with NIH), and while we have had some ups and downs, the effects were almost immediately evident and there has been obvious progression and shedding of ODD and OCD behaviors (she was very severe.) I wonder too about the follow-up re: which abx. you are using. My d weighs 75 lbs and is on azithro 250mg a day, 1000 omega EPA, continuously, and she received some IV steroids the last day of the IVIG (Gammunex IVIG.) She is doing much, much better. Personally, we would do IVIG again if needed, as we are sticking with the Pandas treatment regime as we have seen results. If the anxiety is inflammation, then I would really would want to see a Ps doc. for treatment of the issues your d is facing.