tpotter

Check the chart on this website: http://labtestsonline.org/understanding/analytes/t3/tab/test

WOW!!!! (I'm speechless!)

Thank you for the threads! The presentation of symptoms is very similar to pandas and the treatment is very similar. Both are caused by autoimmunity. Both seem to occur post-infection. Seem more similar than different, except NMDAR antibodies may be detected through a blood test. Just curious, how many pandas kids have been tested? Is it routine at CHOP and Children's Hospital of Cincinnati to administer this test to kids presenting sudden onset psychosis, personality changes, rages, chorea, insomnia, incontinence, hallucinations? Don't know much about the blood test, but I do know it is available. Google it. It is not standard practice, at CHOP, although I'm kind of surprised it's not. I know of at least 2 people on this board who's children are diagnosed. I hope they'll weight in.

Melanie's DS has immune deficiency, and I know they have been doing LD. You might want to PM her.

Interesting, because when my DS would get very ragey, the only way to stop him was to start crying (found it out by chance, and then several times after that, I resorted to it. Same response as your son. DS would say that he didn't know why, but my crying just sort of made him stop.

Yep...I would also bet money on it.

Actually not true. DS16 has had "seizure-like activity" (including abnormal brain waves on 7 different eeg's), and is on 2 different seizure meds that do help control the symptoms. He has also gotten stuttering, and other speech problems during flair-ups. Although he has seizures, they are not epileptic (abnormal brain activity on the fronto-temporal lobes does not correlate with behaviors), but is still described as non-epileptic seizures. Notice that Dr. T. did not say they were epileptic. Dr. L. (also a neurologist) believes that DS's seizures are related to his PANS. I'm not sure what "typical" PANDAS would actually be? All our kids have some similar symptoms, and non-similar. There are so many different symptoms. Everything these girls have are similar to things my boys have had. And, as Fixit said, some of the symptoms (such as the OCD) may be going away, or they may not have recognized them as OCD (I told a PANDAS specialist that DS did not have OCD, but I later found out from a educational psychologist that they had mild OCD, and it had gotten better at times.

I am so glad for you. Do you think you have also successfully avoided getting exposed to illness during this time? We have also been seeing a holistic chiropractor...actually for close to a year now, and although I feel like we've done extremely well, we just can't avoid getting re-exposed (I get exposed at work, and DS16 keeps getting exposed at school.) It's very frustrating, as I believe quite a number of my clients have PANS, and that other of their family members have mycoP or strep, and short of taking off from work (I told my DH that if I had disability income insurance, I would definitely take off), I don't know what else to do. DS16 goes to a private school where I suspect a lot of those kids are sick, and he's constantly getting ill (he's missed several months of school this year.) Whenever I try to decrease abx, we get much sicker.

I know she was originally shooting for around April to open her lab. I don't know if that's still the case, but I sure hope so. He did say on his press release that 2 out of 9 tested CDC positive for Lyme. Given the fact that he also said that 8/9 tested positive for mycoplasma pneumonia, and mycoP can be a co-infection of LD, well...sounds like it's all interrelated. I'm surprised he didn't mention the CDC + for LD on his FB page. Also, given the fact that some PANS kids have little to no OCD, I still think this is PANS (which would make it a PANDAS variant.)

Since your ds is having seizures, I would recommend that you see either one of the neurologists that LaurenK has found or Dr. L, since she is a neurologist, and one of the top PANS docs! Please don't waste your time with the docs in your area.

Ann Corson has a very long waiting list--I think around a year. We are seeing Dr. Marc Schwartz in Jenkinstown, PA (near Philadelphia). He is a lyme doctor that uses A.R.T. testing and Klinghardt protocols. He has about a three-month waiting list. Is Dr. Schwartz part of ILADS?

WHOA...she has absolutely nothing positive to add. She just keeps finding one thing after the other. Quite clear she has no intention of making this work. Good luck Buster

Interesting study. I can see so many flaws...such as, what if the person develops symptoms of a TBD they got earlier (who's going to know?) and who's to say they didn't get bitten somewhere other then their own homes? Just seems quite odd to me that CDC would back something that difficult to actually measure.

We still deal with them occasionally, but nothing as bad as they were. Before getting IVIG, my younger DS would respond, within minutes to 1 - 2 T of peanut butter or a small handful of peanuts (sometimes had to repeat.) I figured this out purely by chance, but it kept working over and over again, and there's no way it was placebo, because he HATES peanuts. I would have to threaten him with pulling away something really important to him, and even then, it would take a little while until I could get it into him. But, literally within minutes, the rages were gone. If he didn't have the peanuts/peanut butter, they would last up to 2 hours, and frequently, he could not remember parts of the whole thing (there were times he was so violent, DH and I would try to restrain him...big mistake...his adrenaline would only increase, and he could literally lift both of us off of him...at only 8 years old...then not know why his legs hurt so much afterwards. But peanuts/peanut butter would stop it.) I never knew why, until someone mentioned that peanuts are full of tryptophan, and I figured out that it was probably the tryptophan plus maybe the fat taking it straight to the brain. Anyway, I mentioned this to Dr. K. several years ago when we first saw him, and he said that seratonin is depleted from these kids because of all the stress (physical and psychological.) He had me start the kids on 5-HTP, and it has really helped. What helped even more was PEX and IVIG in the end. DS16 was just saying that he didn't think he had gotten so much better, and when I pointed out that I don't carry the peanuts anymore, he realized that I was right. So, I think what you should try is 5-Htp (go up slowly, because some people have had problems with it) and lots of peanuts/peanutbutter (we used the sugar free variety, so we didn't add in the problem of too much sugar.) Let me know how it works.

We are using L-gluatamine, at the recommendation of our holistic chiropractor who did muscle testing. As far as I can tell it is not hurting them, but they take so many things, I can't really tell anymore what specifically is helping. We see the doc tomorrow for my youngest. I'll ask him if I remember.

OK...now that the new NIMH website is up and running, and they do mention using IVIG on this major, official website, you could try using that + the 1999 study that Swedo, et al published in Lancet. Typically, you can argue that it can be used: "off label", if there are 2 or more documents showing it's efficacy where it has been published in major publications. Until now, it was just the 1999 study, but now there's also the website.

Didn't get to watch it. Did he get Dr. T's press release? Did he give it a fair shake, or still go along with the whining and excuses being made by DENT?

Doxy is used a lot in lyme and mycoplasma pneumonia (the latter can be a co-infection of lyme). Has Dan been tested for these?

Yes, Igenex can be part of CDC guidelines. Igenex is just another way of testing the western blot. If 5 of the bands are positive on the IgG and/or 2out o 3 of the bands on the IgM are positive, then it meets CDC guidelines.

I seriously question that Dr. T. would not have responded to their request. Furthermore, he put out a press release today: "February 22, 2012 Press Release: LE ROY, NY TEENS: UPDATE FROM DR. TRIFILETTI Ramsey, NJ — February 22, 2012 — Rosario Trifiletti, MD issued the following statement today regarding the teens he is treating in Le Roy, NY. National attention was drawn to the plight of the teens when they were suddenly afflicted with uncontrollable bodily movements sometimes described as tics. “I continue to work with a PANDAS-like diagnosis. The lab work is now complete on all nine of the patients I examined on January 29, 2012 and has shown evidence of infection by either Streptococcus Pyogenes (the common strep throat bacterium, found in five of nine patients) or Mycoplasma Pneumonia (a bacteria-like agent that is a common cause of a mild pneumonia-like illness, found in eight of nine patients). Two patients also meet CDC diagnostic criteria for Lyme disease. They are being treated appropriately according to the infectious agents found and are responding to treatment. In my opinion, these objective findings, which would be exceedingly unlikely to occur by chance alone, support my diagnosis of a PANDAS-like illness. I must remain open to another possibility such as mass psychogenic illness, which can never be supported or refuted by objective findings. However, given the clinical and laboratory data, I find a PANDAS-like illness a very likely medical diagnosis in these children. I hope to see the teenagers again soon, but given that I am doing house calls from some two hundred miles away, it requires extraordinary planning. In the meantime, I remain in close contact with their parents." So...if they are getting better, it is because they are getting abx to treat strep and mycoP. It is absolutely sickening that the DENT docs would be so self-centered as to not care about harming these kids by passing on lies and 1/2 truths!

I think the timing and the way it was written may have to do with the CANS paper that had just been published. I don't think they were aware this paper was coming out, I think it may have been what held up publication of an earlier, maybe more comprehensive White paper (because of the writers of the CANS paper), and I think they may have been trying to minimize the damage. I don't know this for sure, but I suspect it very well may have been the case. I have also heard that Cunningham has been shooting for around April to get her test out to the general public, and once that test is out, I think things may change a lot. At least I hope so.

I think we should have the "sick Mommy" convention. Only, I think it should be a nice cruise to nowhere! Then, we'll get waited on, we can lie out in the sun and the spa, and pamper ourselves silly! I've got my fingers crossed that we aren't about to go through the whole thing again, too. DS went to bed earlier this evening saying he feels like he's got strep again...AAAARGH!

I would agree with you, but what I am finding in my practice is that almost every one of the autistic kids I treat end up highly suspicious to me of having something infectious...sudden onset, parents who have or have had similar symptoms, were sick when they got immunized, etc. Even the kids who were "born" with it many times have parents with immune problems, had symptoms of PANS in the past, etc. Personally, I am beginning to think that the majority of autism is infectious. Good example...DS19 was treated with abx, and some of his symptoms went away (at 15.) From 18 - 19, he was treated with IVIG, and after the 2nd dose, his social skills jumped multiple years...overnight! He is diagnosed with asperger's syndrome. But T potter there must be more to it than that? Infections and immunomodulatory therapy, otherwise wouldn't your son no longer be on the spectrum at all? There clearly must be A LOT of genetic abnormalities in these children. A lot of kids have Lyme and strep without problems. There have also been studies done showing structural abnormalities in autistic brains. These kids are "different" infection/ immune mediated or not. I'm sure it all plays together. DS19 also has the MTHFR 677T gene mutation. Could that play a role? Are there other mutations that he has that I haven't identified? etc, etc. Just like not everyone gets PANS, maybe the symptoms of these Autistic kids is brought on by infection. Keep in mind that autism is only a name to explain a certain set of symptoms: sensory, language and social skill deficits. DAN doctors are treating biomedically, and some doctors, including Dr. B. are treating Autistic kids with immunomodulators (IVIG.) Many, like my DS are responding. I wonder if it's so hard to find the genetic link, because maybe there isn't one...just the fact that the parents were sick, passed it on, and the children had autoimmune responses to infection. And, here's another theory...there are so many more immunizations our kids get these days...they are doubled, tripled, even 5 at a time...given regardless of whether or not the child is sick...all because the AAP says they have to be given on a certain schedule. Immunizations, by nature, control the immune system, so if the child's immune system is already out of whack...how's that going to affect the child when s/he gets the immunization? This is just my opinion. Also, in response to the gut mucosa, it is very common for kids with autism to have stomach problems...leaky gut syndrome is a common one.

I would agree with you, but what I am finding in my practice is that almost every one of the autistic kids I treat end up highly suspicious to me of having something infectious...sudden onset, parents who have or have had similar symptoms, were sick when they got immunized, etc. Even the kids who were "born" with it many times have parents with immune problems, had symptoms of PANS in the past, etc. Personally, I am beginning to think that the majority of autism is infectious. Good example...DS19 was treated with abx, and some of his symptoms went away (at 15.) From 18 - 19, he was treated with IVIG, and after the 2nd dose, his social skills jumped multiple years...overnight! He is diagnosed with asperger's syndrome.

In addition to abx, we have also been seeing a holistic chiropractor and LLMD. I think the whole thing combined has made a huge difference. Not that we don't have set backs, but not to that degree at this point. I think the biggest difference was when we added in the holistic chiropractor who does applied kinesiology (muscle testing,) and tells us what to take based on that. He has been so right on about so many things. This may also explain the glutamate issue, as we take gluatamate based on his recommendation. I know that sptcmom has mentioned this a lot too (via ART). What supplements are you taking, and how do you determine what to take?