HT's Mom

I am probably saying it all wrong. Dr. T was talking so much and so fast that I didn't quite get exactly what he was saying on that point. I had the impression of something more permanent developing, but again, I don't want to mislead anyone on exactly what he said. I will try to ask him again when we next conference. There are better voices than mine on this forum regarding all the scientific sides of the disorder. All I can say is that he and Dr. K have both clearly said to me that older is harder. So don't be scared - you are one of the lucky ones who knows all this now while your child is young! It is a good thing!

Dr T was the FIRST Dr we got to run ANY tests! And he was a GODSEND for us!!! I couldn't agree with you more on his thoroughness, curiosity to look deeper, and he genuinely cares about the child and the parents too! He is a very dedicated doctor! LOVE him! When your son started with this at 8 were his symptoms severe? Curious as to why he still has to battle this at 17....keep hearing that they can outgrow it around puberty. Also you have seem to have done all the treatments I read about on here. We are 1 yr into this, only 5 months into ABX treatment, so very interested in others journeys because if I can stop this now by being more aggressive then I absolutely will keep pushing....even more than I am already! We had big gaps in time when we weren't doing anything. Although we now look back on behaviours in early childhood and recognize now that they were pandas symptoms, we actually diagnosed my son at age 11. At that time he had a six month period from the spring of 5th grade into the fall of 6th when he got progressively bad. Dr. T in fact asked about "sudden onset," but it is one of those wishy washy interpretations of that term. A few vocal tics we didn't recognize at such that spring, then some shoulder shrugging and looking behind him repetitively, to a full blown case of constant repetitive vocalizations and severe OCD. He could barely function by then. Again, all this over six months. We treated him with penicillin for two weeks, and it all disappeared. He was 95%, a few eye tics, until January 2011, one year ago. I WISH I had known back then to treat more aggressively. I Wish we'd known what it was at age 5. Knowing now everything I do, I would T&A, IVIG, and/or PEX very early on. I think older kids can get better, but just passing puberty doesn't resolve it for many. Something Dr. T said about how, if not treated properly and aggressively, the child develops an autoantibody production, don't quote me, but it just gets more difficult to treat. So my advice is go for it, don't wait around watching for it to get worse. Not to scare anyone, just sayin'!

Sorry about that! The longer proper term is plasmapheresis. Thanks all for your comments. I will let you know how are tests go.

DH and I just finished speaking with Dr. T and I hung up the phone and broke into tears of relief to have had this conversation with this man. He was so thorough and sympathetic to our situation. He was particularly interested in the fact that pandas ds17 is an identical twin, and that his brother is not experiencing pandas (sorry I keep calling it that...) symptoms. He wants to test them BOTH for EVERYTHING, all subclasses of immune tests, viruses, infections, down to genetic testing of mitochondrial sequencing differences, to compare the two. All to figure out why HT is having problems while his brother is not. To recap history, we've had two HD IVIG's with Dr.K, and while we have seen immediate improvements both times, things slowly deteriorate, and lately ds is having tics we haven't seen since the major pandas episodes he experienced at age 11. So something is going on, but we just don't know. Dr. K has been wonderful, but having a second opinion and testing things we haven't looked at yet feels right. A couple interesting items you all might like to hear: Dr. T says the Leroy girls he has treated are getting better and he will be presenting them soon on television sitting calmly with little or no movement. Dr. T said that as kids get older, it may be that PEX is more effective than IVIG. I can't quite explain the science he explained accurately enough to repeat here. Few Doctors can do it - he named Latimer and Elia as possibilities if we get to that point. Dr. T said Cunningham's tests will be ready again within another two months and is in contact with her regularly. Dr. T said tonsillectomy is generally better to do than not, at any age, especially if the child is a strep carrier (which of course you don't always know.) He compared it to a woman with a lump in her breast. You may not get all the cells out, but having the lump out is still a huge improvement. Emphasized antibiotics before during and after. Anyway, it feels good to talk out with him, as opposed to just reading the forum (no offense! and wondering what to do next! He is sending scrips for multiple tests for all of us, and then we will consult again after he gets the results.

Thanks for your reply. I actually "chickened" out and took him off the next day. I feel its Mycoplasma with Nick but we will see... abbe I just want to make sure you are clear that Mycoplasma is a known PANS infectious trigger. It is not just strep that can cause the syndrome. See the post about the new White Paper on PANS. Mycloplasma needs to be treated with antibiotics if your child is experiencing pans symptoms. I'm just posting this because you said "We ruled out Pandas because he never once had strep" and "it feels like Mycoplasma".

I recommend that you keep the appointment with Dr. K. Do not worry about the results of the tests, as the doctor is looking for indications of past or present infection, but will not depend on this alone for diagnosis of PANS. If the tests show something, that will help the doctors' case, but again, it is not the only criteria. Once you and your daughter have met with Dr. K, you can correspond with him fairly easily by email to keep him updated on her symptoms as they come and go. Although we all of course pray for you that this episode was the only one she will have, if she does indeed have PANS, she will likely have additional episodes of symptoms eventually, and you are best off getting a specialist on board now, rather than waiting. As others have posted on your previous threads, it is probably best to insist on the abx now regardless of a current infection. There is little or no risk to this (make sure she takes a good probiotic also, several hours apart from the abx), and it will keep things under control until you see Dr. K and he recommends further treatment protocol, if any.

So true! Unfortunately there are a lot of people watching it who believe... My own parents, I'm ashamed to say.

OMG There has got to be something we can do to counteract this crap. I can hardly stomach these comments by Siegal. And Fox and all the others air these guys for the public to watch which gives them credibility. TPotter, you are so right. How can he call blood work Opinion Based but support Conversion Disorder as evidence based. I feel like Alice looking through the looking glass!!

Tracie, What has the year been like? Has she progressively gotten better, or has she been well since #2? I ask because we did IVIG #2 in November and DS is not as well as we would have hoped. Dr. K says wait to see, but it is hard.

Love Dr. Jenike. No ego. No claims of expertise. No absolute answers. Just a reasoned (if not thorough) explanation of PANDAS/PANS and the possibility that this could be an explanation, and a recommendation that the girls go to an expert in it. An alert to parents that if their child presents with sudden onset tics and/or OCD, to have them checked out for PANS. I'm not sure what the wheelchair story was though - CD or Pandas? He didn't quite clarify.

My husband and I watched. DH is the one who posed the ulcer question, as well as several others which they did not post. I believe the interviewer was screening the questions and comments, because we asked several they ignored. There were way too few posted for the number of people who had to be watching and commenting. The whole thing was quite frustrating. I do believe they truly believe what they are saying, but they are clearly angry at Dr. T for calling their CD diagnosis "garbage." Even though most of us agree, it probably wasn't smart of Dr. T to do so before seeing the girls. He must realize this, since he is being so PC and composed ever since. Someone did ask what the problem with the patients seeing Dr. T, and Dr. M responded that the girls and Dr. Trifiletti should be coordinating through Dent since "we are the treating physicians." Treating??? The thing I don't get and that we tried to ask the doctors is why this insistence that Dr. Swedo is the only doctor qualified to comment or diagnose PANDAS. They kept saying that since she wrote the original paper in 1998, she's the expert. To dismiss Dr. T who has actually treated hundreds of pandas patients, as opposed to Swedo who doesn't treat at all outside her studies, is crazy! Swedo's criteria is so narrow compared to what we all know can actually be Pandas that I'm a bit worried she might not diagnose pandas even if she does see these girls. Maybe the parents are smart enough to rely on Dr. T, an actual Pandas treating physician. I sure hope his treatments show results.

Watching right now and taking notes: "The Doctors" brought Alycia and her dad to CA. Neurosurgeon Dr. Neil Martin, in California seeing Alycia from Leroy, one of the first victims. Her symptoms started in May 2011 with a seizure episode/ she passed out at a softball game while pitching, then started convulsing. Then additional seizures. Lost 20 pounds last summer. Headaches. Passes out regularly. Violent tics. Dr. Martin is Neurosurgeon. Is reporting results of his examination of Alycia on the show. Dr. Martin gets the PANS name wrong - calls the strep theory Post Acute Neurologic... (I didn't get the rest.) Exam: Functional MRI. Thinking of items while in the MRI. Throat swab to check for strep. Results: "Brain looks completely normal." Strep infection throat culture is negative. A lot of looking at her brain scans. Everything normal. No discussion of titers, antibodies, other PANS possibilities or criteria. "Does that make you feel better, Alycia?" "Yes, I feel so much better. " Big smile. (WHAT?????) Dr. Martin "The future looks good for you. NO real problem." The narrator says DENT has only seen FOUR students. (Can this be true?) "tics are not that unusual. 5 - 15% of kids have tics. Don't worry if your child has tics that there is something wrong with him." End of story. SO FRUSTRATING!!

I've watched Dr. Drew most nights. It is very frustrating how attached to "conversion disorder" he is. One night he and Dr. Sharp spent the whole episode talking about how EASY it is to diagnose conversion disorder. They agreed with each other that all a good psychiatrist had to do was look at a patient to see conversion disorder! Granted, he is talking about and highlighting environmental and PANS possibilities, and thank god, giving air to Dr. T, but Dr. T's results are the ONLY actual medical results indicating a real reason this might be happening to these girls! Why so little air time to dr. t or to the possiblity of Pandas by Dr. Drew or any of the other media? I guess we have to remember Dr. Drew is a psychiatrist, and is definately going to defend his profession and everything he thought he knew. But it was maddening how, after the "moment of silence" he practically dressed down Dr. T for not collaborating with Mechtler! How could he expect him to when Dr. CD has been dissing Dr. T all over the media?!

I think it is an OCD behavior. When my ds was very little, 4 or 5 yrs old, (now 17) he went through a phase of touching us and then saying "i'm sorry Mommy". He would do this over and over, touching and then confessing. We didn't know what was going on, years later he was diagnosed with PANDAS and we remembered these episodes. Well, flash forward to being in Chicago at IVIG #1, and we met another child being treated who was doing the same sort of thing, and some repetitive verbal outbursts. My ds described this child's behavior like this: "He has to keep doing it until he gets it right." Even the verbal "tics" he described as a compulsive feeling. The touching and then confessiing he also described as having to do again and again until it feels right.

I wonder how that bow-tied idiot Dr. Sharp, who keeps agreeing with Conversion Disorder on Dr Drew, and Dr. Jenike get along !? They are both psychiatrists at Harvard Medical! At least someone there has some sense!

Okay, but isn't there likely to be some (perhaps additional) reason why this has happened to 16 kids in one school and that has not happened in any of our children's schools within a specific time frame like Le Roy? Perhaps an environmental factor, perhaps a wicked combination of Strep AND Myco-p? Certainly disregarding "mass hysteria" as a diagnosis for such a public story is advantageous for all. I'm just not sure about what is on the other side of this "tipping point" and it makes me a little anxious. Yes, I'm probably naively optimistic. Yes, so many kids at one time, one place, same age, no history that we know of. It doesn't sound like it could be a "simple" PANS/PANDAS situation. But if it is, or some combination, as you say, that brings attention to this thing, great.

[oops, accidental repost)

Well, I for one and jumping out of my skin with excitement over the possibility of Dr T getting up there and these kids being diagnosed with PANS/PANDAS. I hear your concerns about insurance, media suppression, etc, and I completely agree with the conspiracy theorists about why the medical community, insurance companies, pharmaceuticals, etc would continue to dismiss the diagnosis and its treatments. My dh is a medical malpractice attorney, and any one of his cases would make you a believer in that stuff. (DH keeps threatening to bring class action on behalf of all pandas patients!! Anthem just sent us a letter saying no more IVIG's, after approving the first two.) And the doctors are definitely in with the pharmas - good hunting, thenmama! But we parents have been waiting so long for this type of story and case, where it can't be dismissed as just another story about just one weird kid. Each time one patient is profiled, Sammy, Lauren Johnson, the many other articles around the country about individual Pandas cases, there is never, that I've seen, a connection made in the story to the other cases, The Today show people don't even connect them when interviewing the individual families. So if 13 or 16 kids are diagnosed at once, WOW! This can only help with diagnosis and treatment of future kids. And selfishly, we moms won't sound so crazy to our peds, families, teachers, etc. It is still a long road ahead for proper treatment prescription and coverage, but it would be a great start.

It is great to see this, you are so right. But isn't it weird that Megan doesn't run with it? Or ask a single follow up question about PANDAS, strep, etc when he describes it? NO ONE on any news show has given a specific idea of what this might be other than it's all in their heads, and she skips over that and goes back to the privacy questions.

Jen, so sorry your son is experiencing this. You do not mention what treatment for PANDAS you have tried or pursued. Have you consulted with one of the PANDAS docs? Has your son been on antibiotics, or done IVIG?

4 Would it be possible to do IVIG every 8 weeks? Not really. We have done them with Dr. K, and can't fly to Chicago over and over. Plus, although Anthem has paid for the first two, we recently got a letter saying no more. So, unless he gets seriously worse again, we will not go that route for the time being.

Hi everyone, We are two months post IVIG # 2 for our ds16, and so far so good. As far as we can tell, he seems so much better in terms of PANDAS type symptoms. Few tics, no outward signs of OCD, calmer, more engaged and conversant, etc. But last night he said to me "What if I don't get better?", and then refused to elaborate. I think he doesn't even know what is normal anymore, it's been so long, and the stress and anxiety of school and a general malaise about it all is what is getting him down. He may be having intrusive thoughts still that he can't control, but it is hard to tell if this is PANDAS or anxiety or distraction or what. He and his twin brother both have ADHD. He will not use traditional stimulants due to the increase in tics they cause (his brother takes vyvanse) so I am wondering about Wellbutrin to help with both depression and ADHD. He is missing so much in school and having to teach himself and play catch up all the time, and can't read for long periods of time without ticcing and distraction (The Scarlet Letter, anyone??) Ugh. So if anyone has any experience with this one, or other suggestions, I'd appreciate your input! Thanks.

My link This was sent to me by the mom that was in the Washington Post, and she got it from an email from Beth Maloney. Posted in the WSJ today, I think. http://online.wsj.com/article/SB10001424052970203518404577094604010074464.html

That was a good article! Helpful in visualizing this methylation issue, which is way over my head. But, I'm wondering about the testing too - am I missing something or has no one yet posted exactly what tests to ask for?? It seems that this article, and most of the explanations and the books available on amazon about methylation all seem to be dealing with treating too much homoscystein (under methylation, I think?). Is this the more common problem?

I don't recall the history on your child regarding pandas treatments - did he have abx and/or ivig treatments? I ask because we went through a vocal tic period early in our pandas journey - My son's "BIG" pandas episode at age 11 was almost all vocal tics. Started with throat clearing and a little laugh, and over several months developed into full blown echolalia, repeating sentences continuously up to fifty times. This was back when we didn't yet know about PANDAS, and once we found that diagnosis he was treated with abx (penicillin for twenty days) and all vocal tics disappeared. So, at that time there was no particular supplement other than the abx that fixed it. Recently, when ds (now 16) and I went to Chicago for IVIG treatment, we met another PANDAS child with vocal tics. My ds described what this boy was doing as a compulsion. " He has to do it until it sounds right in his head." I thought this was interesting, as I had always assumed it was "just" a tic, not OCD. My son's more recent pandas episodes have not involved any vocal tics.