Sequin

Has anyone seen this... http://www.faqs.org/patents/app/20090030180 There seems to be a some evidence that Hyaluronic Acid peptides could be beneficial in helping to reduce the bodies need for antibiotics and fight GAS?? At least there is some research being done on it and a request for patent.

Anyone out there feel like the timing of all of this sudden "new" information (the NIMH update, the OCD Foundation paper, the newly defined PANS, etc) is curious?? I just can't help but feel that maybe the fear that something strep or infection related was really going on at LeRoy helped move the process along. Over the past year it has been like watching paint dry in relation to the relatively little information that really is out there on PANDAS. Then almost overnight it is as if there have been giant leaps forward almost as if the pipeline is being primed. Sorry to be so suspect but something in my gut causes me to question- do they know more than they are saying?

Beth Maloney just sent out the following link in regards to a new paper posted by Dr. Jenike which you might find helpful- "I received an email from Michael Jenike, MD of the OC Foundation enclosing two PSA Announcements. As you may know, Dr. Jenike has been very supportive of the principle that infections should be ruled out when children present with a behavioral disorder. I am attaching the PSA that he recorded for physicians. I know that many of your pediatricians do not believe in PANDAS. I think that when they hear this directly from a Harvard doctor it may cause them to reconsider that belief. Because this is from the OC Foundation, it of course discusses obsessive compulsive disorder as a primary indication. I know that so many of you do not have that presentation in your precious children who present with tics, ADHD-like behaviors, separation anxiety, etc. But what I like is that he runs through the other possible symptoms. Consistent with Dr. Jenike's statements on Anderson Cooper and to Scientific American (in regards to the Le Roy teens), he supports the concept that the sudden onset of almost any neuropsychiatric symptom warrants consideration of an infectious cause. I encourage you to share this PSA with as many people and places as possible: physicians, schools, and news media outlets. Both PSA's are excellent, but the other is more focused on OCD. They can both be found at http://ocfoundation.org/PANDAS. Please visit that website to see them both."

I often find good info from Dr. Weil on his website- He posted the following about these tests that you might find interesting... I checked with David Perlmutter, M.D., a neurologist colleague in Florida, about the accuracy of urine testing for neurotransmitters. He told me that neurotransmitters and their precursors are produced in abundance throughout the body and to assume that "what is collected in the urine reflects what's going on in the brain is a stretch." Here is the link- http://www.drweil.com/drw/u/QAA400661/Neurotransmitters-What-Tests-Work-Best.html

I completely agree this is very disheartening for those of us whose children are primarily ticcers. In the case of my DS- his primary acute onset was tics- very severe and overnight. It wasn't until his 3rd and 4th illness and re-occurrence of ticcing that we were able to link it to strep. He has been on a prophylactic course of zithro now for 90 days and is now 100%. In the case of my DS- why do the abx work so effectively if it is just TS???!!! I am fearful for all of the future children who will be diagnosed with TS incorrectly and will suffer unnecessarily. Can some of you that have been here from the start provide more of the history as to why all of the push back from the TS side? It makes absolutely no sense to me at all.

I personally think you have to be very careful when choosing a probiotic- I found first one we tried actually increased symptoms for our DS. Then switched to Culturelle and couldn't be happier with the results. I am considering putting rest of family on the K12 version but still leary about it for DS since it has strep strain. Please update if anyone finds positive results with it.

I just can't wrap my head around why this 40 year old spill would suddenly cause this acute onset of symptoms in this cluster of girls. Many of them were friends, which in my mind also makes infection more likely. Being normal one moment, and then waking up from a nap with these motor symptoms sounds too much like PANS. If it was toxins, why would it suddenly show up at once? I would think toxic symptoms would be more long term...not going from zero to 60 all at once, unless of course they swallowed a bunch of the toxic stuff just b-4 their naps. However, I do believe the chronic toxic exposure would make them more prone to cancers and perhaps even developing an auto-immune problem in the first place. I do wonder if certain strains of strep are more likely to trigger "tic-ky" PANDAS and other strains are more likely to trigger "OCDish" PANDAS...which would account for the similiarity in symptoms. Nobody has ever (that I know of) looked at if certain strep strains are more likely to trigger a certain constellation of PANDAS symtpoms. EAMom- Light bulb!I think you are on to something- very much seem to be two kinds based on which receptor D1 or D2 per Swedo explanation I have always thought that based on the "perfect storm" in each of our children it takes advantage of their own internal weakness and they then present with more OCD or Tic like behavior BUT maybe it is the strain of the strep, etc that determines the symptoms. Perhaps you are right- there just may be a more virulent strain that is now hitting some of the older children and somehow females are more vulnerable to it. This may also be the reason as in my DS case that he responds so well to daily zithro- primarily a ticker and possibly affected by a different strain than some who have more OCD like symptoms and have to go the full course and more in depth treatments. Also a possible cause why some strep leads to Rheumatic fever v. PANDAS??? Is there any good data out there that analyzes differences in the strep virus itself?

TPotter- Am I correct in understanding that in this study they are clearly only looking for the high OCD patient not one who just has more of the motor tic issues? I am assuming it is because they are seeing the OCD as the more detrimental of the two and considering them for treatment only if very severe in symptoms. Would that be a correct assumption??

Thank you- I am assuming you have used probiotics? When my son was on the abx I would put the powder in yogurt in the afternoon everyday- he had no problems at all to the abx with that combo.

At the conference, she made it clear that not only was cam k significant, but so was D1 and D2 (one of the Dopamine's being high would indicate that the child would have more psychiatric problems, and the other would be more neuro.) I asked her what it means if both my DS's numbers were high (both Dopamine 1 and 2), and then I kind of finished it myself...both neuro and psych problems are bad for him) I would suggest emailing Dr. C. about answers to your questions. I don't want to assume that I know for sure that it is 100% diagnostic of PANDAS/Lyme/SC or just that it definitely shows something. I know that it is significant enough for her to start the process of trying to offer it commercially. She may not answer you directly, as I know she is working on (or maybe waiting for) publication of the findings. I know that publication, once submitted and accepted in these major journals, can sometimes take a year to get in. And, the other question...no it is not commercially available, yet. Dr. C. just finished a 1000 child trial with the test. Any thoughts on where to find her email address? Disregard found it on the PANDAS facebook page- thank you!

This is the first I have heard about this test so sorry if this is repetitive for many of you- am I to understand the Cam K test is not available anywhere at this time?

Interesting that you say symptoms came back worse after abx we had same response. Can you tell me how much and when she is taking the zithro now prophylactically? Was your steroid burst prednisone?

Oh, I forgot about the M.I.N.D. Institute! Have you seen this video? Sue Swedo spoke there in 2006: Clinical Clues to Environmental Triggers: Lessons from the PANDAS Subgroup http://www.ucdmc.ucdavis.edu/mindinstitute/videos/video_tox.html There are various threads about PANDAS kids having high or low histamine levels, and also various anti-histamines. My PANDAS dd gets a chlortrimeton anti-histamine on most days due to exercise urticaria (she can get itchy when she runs). I think this is unrelated to PANDAS. I have the same condition. That's good that your son's tics go away on Azith. For us, tics have been a milder symptom (not a big deal compared to the OCD) but they are the slowest to go away (least responsive to treatment). When we first "discovered" Azith, mood started to improve in 5 days, OCD in 2 weeks, tics took 4-6 weeks. But, for other kids, tics go away more easiliy. Did I already ask you about advil? Sometimes that helps PANDAS symptoms. Yes, it would be defintely be better to be treated locally! Let us know how UC Davis does. I wonder what they are going to say about the rash as well. Take pictures of that too. Funny how things seem to be intertwined- I was just reading the post on the Texas symposium trying to gain some insight on it when I noticed that Dr. Thienemann was measuring anti-inflammatory in her patients- hadn't considered that as an option. Have you tried it even for the milder tics? If so when do you give and how much? I know it can be problematic on the stomach if taken long term. Thank you for the video link- I did see it when I happened to link UC Davis and PANDAS and thought how ironic that she was here speaking on it several years ago and they have done nothing to further their understanding of it...

Have any of you tried melatonin personally? I say this because it can cause very vivid nightmares in some people. I am not sure if that is an issue any of your kids are having but it is something to consider if they are. I would take it when I traveled often to the east coast for jet lag and it worked very well. It wasn't until I returned from a trip and continued it for more than two weeks that the crazy nightmares started. Once I discontinued use they went away immediately. Again it may not be a factor at the low dosages you are working with. I would think magnesium might be an alternative if given at bed time. Only my opinion based on my experience fortunately my DS doesn't have sleep issues.

Sorry total newbie here- all the info you have supplied is fascinating. Thank you, thank you, thank you- I happy to know there are others out there just as neurotic as I have become over this disease! While much of it is was over my head the one thing I took away from all of the links- One source is when the amino acid histidine looses a carboxyl group. Some bacteria can faciliate this conversion too. So if you have a bacteria overgrowth, it may be using up histidine and converting it to more histamine. Thus perhaps the strep link...