peglem

Yes, this is the exact same group as the 2008 Pediatrics article, where the purported PANDAS kids didn't actually have PANDAS, and one of the lead author's (Leckman) even admitted this to the Boston Globe. Singer/Kurlan have used data from this non-pandas group in MULITPLE papers with the aim of refuting PANDAS. "Serum samples were available from 44 subjects with the diagnosis of PANDAS. Individuals were participants in a longitudinal Tourette Syndrome Study Group multicenter study of streptococcal infection and exacerbations in children with tics and obsessive–compulsive symptoms (Kurlan et al., 2008)." Also, the labs were NOT run by Cunningham:

"Methodology is a modification of Lopez and Schnaar (2006).Assays wereperformedinsterile96-wellmicrotiterELISAplatestowhich50μl of antigen (10μg/ml; N-acetyl-D-glucosamine conjugated to bovine serum albumin (BSA), GlcNAc, Dextra Laboratories; purified bovine brain tubulin, MP Biomedicals; or human dopamine D2 receptor, PerkinElmer) were incubated overnight at 4 °C, then washed with 0.1% Tween in phosphate buffered saline (PBS). Plates were blocked with 1% BSA, washed, and incubated with serum diluted 1:500 in PBS with BSA. After washing, plates were incubated with secondary anti- bodydiluted1:1000in1%BSA,washedagain,anddevelopedwithpnitrophenylphosphate (Sigma). Optical density values were measured at 405 nm on an automated Bio-rad (Hercules, CA) Model 680 Microplate Reader and corrected by blanks (antigen without serum). Assays were performed in duplicate. All assays were performed in the laboratory of Dr. Harvey Singer at the Johns Hopkins Hospital." This paper is a bunch of garbage and I suspect even Harvey Singer knows that.

Day 9 on abx and my son's tics are almost completely gone. No OCD or ADHD behaviors either. We haven't had him this good since before he was diagnosed. I don't think I can be more convinced that he has PANDAS.

If your child has labwork showing CDC positive for lyme or co-infections, and/or there are specific symptoms, such as the bartonella rash, for instance, I would tell him, that Dr._________ diagnosed and started treatment. But, explain that you are at a loss as to why your child is not improving, and that you really need his help in finding out what is truly wrong, and what to do about it. Then, leave it to him to put the puzzle pieces together.

Tylenol (acetaminophen) depletes glutathione. Glutathione is the body's most important antioxidant. It has a critical role in protecting cells from oxidative stress and maintaining the immune system.
 
Here is a good article on glutathione: http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html
 
High doses of acetaminophen or long term use depletes glutathione, which is made by our liver. This is the primary reason for this widely used over-the-counter drug's well-talked about liver toxicity. When someone overdoses on Tylenol, NAC will be administered to clear out the liver. NAC (N-Acetyl-L-Cysteine) is a precursor to glutathione.
 
In my ignorance many years ago, I often gave Tylenol post-vaccinations to both of my children. Glutathione escorts mercury out of the body. Some vaccinations at the time my children were young contained mercury. By giving them Tylenol, I was unknowingly putting them at risk for mercury toxicity. They both have heavy metal loads to this day.
 
We only use Ibuprofen and completely avoid the use of Tylenol.
 
 
 
 

They need a course in logic. If you can't test conclusively for it, you also can't rule it out.

Well, I think that tourettes and OCD are symptoms. "Syndromes" are usually only a description of symptoms. PANS is one possibility for what causes those symptoms to occur. If you accept the "diagnosis" of tourettes and OCD, then you will only be treating the outward manifestation of the problem. Searching for what causes them might give you a more permanent solution. Even if these things run in your family, it may just be an indication of a genetic predisposition for whatever the underlying cause is.

I want to chime in on the "bipolar" question. Warning, this is just my opinion. My DS10 is diagnosed with "mood disorder-NOS" which is a polite way to say he's bipolar, but too young to say so outright. I am really cynical about this and about the pysch profession in general. Psychiatry has distanced itself from medicine and I believe that is a tragedy. Pdocs look at a collection of symptoms, label it, and try to medicate the symptoms. There is no thought as to the underlying triggers, and the factors that actually CAUSED these symptoms. I wouldn't get too hung up on a psych label, unless you need it to get help/treatment. And while I am not exactly enamored with the psychiatric profession, I do think most PANDAS kids would benefit from the support of a PANDAS-knowledgeable pdoc on their team. The only problem is actually finding a pdoc who has a clue about PANDAS.
 
As for bipolar, I was diagnosed bipolar as a young teen. Looking back now, I realize I had PANDAS. My "bipolar disorder" disappeared when I went on antibiotics for 2+ years for acne. When I grew past my pediatric years the so-called bipolar faded away completely and never came back. I think I was one of the lucky ones who outgrew PANDAS. I'm desperately hoping the same for my son!

It was reported in the news yesterday that the FDA is now barring the importation of Ranbaxy generics.
 
http://www.latimes.com/science/sciencenow/la-sci-fda-bars-generics-ranbaxy-20130916,0,7988493.story

I get the frustration with a doctor who appears unresponsive, especially when you need him most. However . . . I feel the need to express an opinion. Can I encourage everyone to take their "gripes" about any particular doctor to PM, rather than in public? New folks who come on board and want some "inside scoop" on any doctor they're considering could do the same, so the necessary and appropriate information and support can still get where it needs to go . . . just more quietly.
 
Dr. T. is one among a few doctors, Achilles heel and all, who has stuck his neck out repeatedly to try and help move the diagnosis and treatment of PANDAS forward. However imperfect his methods and communication, he has nonetheless helped many.
 
But not unlike any number of practitioners in any number of fields, he is not the right fit for every body. But I'm guessing that many of us know that upon a first meeting with a doctor or a dentist or whatever . . . you walk into the office and the receptionist isn't friendly, or the environment feels "tired" or dated, or they've misplaced the lab work you faxed over in advance, or your dental x-rays have gone missing, or the doctor is running an hour behind schedule, or whatever. And something is a "red flag" for you, right off the bat. These things rarely occur in a vacuum; you can usually see some of it coming. But maybe, when it comes to docs who may help us in caring for our PANDAS kids, we're willing to overlook more of the things we'd typically expect from a professional environment/provider in exchange for hopefully finding someone who will help us set aside our "desperation." Because, as well all know, these guys are rare.
 
In the end, though, it doesn't seem entirely fair to lambaste one of these providers after the fact, and in the public square. So I'd like to suggest that you express your dismay/disappointment directly to him and/or his office. PM another forum member with a similar experience so they know they're not alone. And, ultimately, if you feel that the cons outweigh the pros, and you cannot tolerate the "trade-off" regarding the shortcomings versus the support you get from any provider, it is probably time to move on and find someone who fits/serves your needs better. I know in the PANDAS world, that can be much easier said than done. But "bad-mouthing" a provider here doesn't, in the end, fix any problem or solve anyone's need; and it potentially drives a needed provider, however flawed, out of the fold. He'd be better for hearing directly from you how he or his office has let you down, so that he has a chance to make changes, if he's willing and able. And if he's not, well then, you have your answer there, as well.
 
Sorry . . . don't mean to come off as the "school marm." I just think we need to be as constructive as possible, whenever possible.
 
Everybody hang in there!

We do HD IVIG every 3 weeks (for 3 years now!)- it helps to keep her from getting sick=more stable. She still does have flares, but less often/less severe and the next round of IVIG pulls her out of it. We've recently been treating her for MTHFR mutations, which has really helped and I'm hoping to eventually get her off IVIG.

If you can afford it I say go for it. Pandas is not understood well enough by ANYONE to say that IVIG would be ineffective.

So, where can I get some of that "skinny" bacteria, is what I'm wondering? :-)

I'm not sure why you're asking this- I mean are you wanting to know if you need a neurologist or what you should demand of one? PANS causes neurological symptoms, but those symptoms are not neccesarily specific to PANS. So, for starters, I think a neurologist should rule out/in other things that might be causing those symptoms. Then there's the whole treating symptoms (live w/ it) vs finding and eliminating the root cause. Ideally, the doctor would do both-improve patient comfort, while seeking a cure.
 
PANS involves so many medical specialties- immunology, neurology, psychiatry, infectious disease, and possibly lyme literacy-
Most of us look for somebody who is willing and able to treat, regardless of the specialty. I think, however, regardless of who you find to treat, it is important to rule out other causes for the neuro symptoms-

I'm not sure why you're asking this- I mean are you wanting to know if you need a neurologist or what you should demand of one? PANS causes neurological symptoms, but those symptoms are not neccesarily specific to PANS. So, for starters, I think a neurologist should rule out/in other things that might be causing those symptoms. Then there's the whole treating symptoms (live w/ it) vs finding and eliminating the root cause. Ideally, the doctor would do both-improve patient comfort, while seeking a cure.
 
PANS involves so many medical specialties- immunology, neurology, psychiatry, infectious disease, and possibly lyme literacy-
Most of us look for somebody who is willing and able to treat, regardless of the specialty. I think, however, regardless of who you find to treat, it is important to rule out other causes for the neuro symptoms-

We're doing both methylation and abx, and just finished a 7 day course of anti-viral. Since adding the methylation treatment, my daughter's moods and behaviors have drastically improved....really amazing!

Finding an MTHFR issue was one of the best thngs that ever happened for my DD. The change in her since treating this is indescribable. She went from a kid bound for bipolar meds to a kid no one would ever, ever consider unstable. Have you tested other genes or only MTHFR?

Well, I'll leave it to the "experts" like LLM to respond to what the mutation actually translates to, but that's not necessarily "bad" news, is it? I mean, I get the impression that 1) it's fairly common, and 2) now you know what you're dealing with, so you can start tailoring your interventions to the mutation so that they're more effective?
 
Maybe this is, really, "good news" and "good news"!

First of all, Mazel tov to your DS! I can't imagine how stressful it must be to be organizing such a huge event on too of managing all you have going on with your other son. I'm sure its very stressful for him as well knowing that a big family event is going on and be is not able to participate. Give yourself a pass on loosing your temper, I'm sure most of us would have lost it long ago.
 
On the positive side, the fact that your son is still hanging out with friends seems like an outstanding sign. My DS could not maintain any relationships at all while in a flare. I know they are all different but that does look like a good sign. Also, sometimes improvements take time to manifest so don't give up on hope yet. Its amazing that you have been a me to navigate through the system and get so many treatments for your son. That's more than some of us on this forum have been a me to accomplish thus far. You are doing amazing and taking on a tremendous amount. Focus on getting through your big event and the. Give your DS time to find his new baseline. You know that he is probably feeling all the stress around him so give it all a chance to pass. Hang in there!!

Cool! Thanks.

I am not a good one to be giving advice - my kids still have sleep issues and they're 8 and 10. I always chose sleep over principal. So DH and I aften gave in and slept with the kids instead of being woken up repeatedly. If I fall asleep for more than 15 min and then get woken up, I'm up for hours. So I personally couldn't fight this battle while also being expected to be compassiontate during the daylight hours. The good news is that as the 10 yr old has gotten older, he has learned to sleep alone pretty easily now and only rarely will come in an hour after I thought he was asleep and tell me intrusive thoughts are keeping him awake. The 8 yr old is also getting better, but not quite as successful.
 
So sleeping alone is in the same category for me as thumb sucking and pullups. I doubt any kid will walk down the aisle for his/her wedding still sucking a thumb or wearing a pullup or sleeping with a parent. So when PANS was on the front burner, where everyone slept was a whole lot less important than the fact that we all got enough sleep to be kind to one another all the other hours of the day.

Hi Melanie! I have no idea about all of that. I just want tyo say "Hi" and nice to hear from you again!

What I found over the years is that when a treatment began working, when healing began to take place, we started seeing SEs from medication we had been using to deal w/ symptoms. So, maybe this is a good sign?

What I found over the years is that when a treatment began working, when healing began to take place, we started seeing SEs from medication we had been using to deal w/ symptoms. So, maybe this is a good sign?

IMHO, 7.5 mg of methlfolate is way, way too high for a child. Most adults need only about 800mcg - with is 1/10 of the dose she's suggesting. I replied in detail to your other thread.

So sorry. I am having one of those crumby days myself. More just plain sick and tired of dealing w/PANDAS at all. I am always the bad guy, always the disciplinarian, always the medecine-giver, the one who keeps track of docs, insuarnce, finances and does the OOT traveling with our son. I need a break longer than an hour to clean and do laundry. I wish my family members would step up and offer me a day off...or that my husband would show a little more appreciatiation for the incredibly hard work that I do 24/7 for our son. Sorry. Cranky. Hope your friend sees reality and so sorry that she disappointed you!