norcalmom

OK, so I'm not a research scientist, but I'm thinking about how they are going to do this new pandas study. The origial was 20 years ago, and they know a little more now (not nearly as much as they should becuase it looks like pandas interest went dormant for 15 years or so) With cunninghams research, they now know that lyme can also cause the same clinical reaction, as well as Cam K antineuronal reaction, as strep, in certain kids. So, are they going to give every kid a lyme test(and mycoplasma) to make sure they don't have lyme before letting into the study? so they can isolate strep only? Or have two groups - the lyme group and the strep group...or three groups (since strep is everywhere, and the lyme triggered kids probably also reacted to or had strep at some point) the strep group, the lyme group and the strep + lyme group? Scientists out there - arent' they going ot have to screen for this now that they know bout it?

What will be interesting...is the whole thing!! I'm dying for her to start publishing some information on what she is finding. She is looking at hundreds of blood samples - from strep related to lyme related...all causeing the same neuro-phychiatric reactions. And, she is getting data on these levels before treatment, and after treatment...after ivig, after antibiotics. IMO once we get rid of the name pandas - we will all be in the same boat. Bacterial infections that trigger neuor-psyciatric symptoms. For some it is lyme, for some it is strep, for some it is mycoplasma. And for some, it can start with one, and then the others do the same. As we know, strep is everywhere. So, if lyme started it...strep can also trigger it in that child. Shouldn't we all be checking for all three know triggers to make sure the underlying infection is gone? I mean...geesh...the amount of tests I've run are astronolical, if I had started with a cunninghams test, and then done titers, lyme and mycoplasma ... that is a drop in the bucket compared to the full allergy, celiacs, funguses, mercury, lead, CBC, immune panels, stool tesing...

No. It doens't mean anything. I think almost 50% don't have high titers. And was it girls? that only 30% have titers? can't remember, but you can search Buster's last survey and find out. There is alot on here about titers. or you can look at the www.pandasnetwork.com website for more information. Not all people get a raised titer after a strep infection. And, your child can react to exposure (won't raise a titer), not just infection. Plus certain kinds of strep only rasie AntiDnase B, not ASO...plus you have to get it done in the right window....plus your child may be int he "PITAND" phase - they react to viruses, not just strep (although may have an untreated strep infrection in there past that their body resolved on its own). That's what our DS was - he reacts to viruses. He did not have raised titers, or a known strep infection. Although, after reading stuff for a year I remembered a weird rash he had weeks (maybe even a couple months) before his exacerbation, and the rash looked like what I now realize is peri-anal strep, which I treated at home with several applications of antibiotic ointment. It was mild, nothing I thought required a doctors visit. By the time we took titers it was 9 months after that or so..whey would be back to normal...if they even rose in the first place, plus, perianal strep and impetigo are two types of strep that do not rasie ASO at all.

you're leaving? ..but I understand. I will probably be leaving or taking a break soon too. At a certain point, it just isn't heathy for us to imerse ourselves like this everyday. I'm sort of in the mode trying to give back to the forum, since it gave me so much. And you certainly have done your time in that mode. Thank you for all the advice you given and awareness you have raised. I will PM you my email...in case you want to have coffee (or a coktail) sometime!

Gosh you're nice! We consulted with and did ivig with Dr. K. The follow up is the tough though. We are 7 weeks post. Tell Dr L that there lots of reluctant experts... but they don't have medical degrees. They are parents that spend every waking hour doing research and networking with other parents to dig up information so they can make more informed choices regarding their childs care. And tell her it would be nice if teh four esperts could agree on what the proper ivig does is, and how to know when child needs more than one round (and timing of that 2nd or 3rd round). Also, thinking about you and your ex's situation - there are soooo many kids that are misdiagnosed. My nephew has been on ADHD and tourettes meds for years. Got them to do a cunningham's test on him - bingo - high pandas range (186). Those of us that seek out a pandas specialists and get this diagnosis for our children are in the minority, by far. We are taught to listen to the doctors,after all they know more than we do. But what to do when there are hundreds of doctors that misdirect out of ignorance, and even more that turn their nose up at scientific research? (what is this the dark ages?) All I have to say is thank God for the internet. I decided to read everyting and make up my own mind. Trust my own intelligence. Not let someone else's optinion - even if he is a neurologist, deter me from what I logically beleive to be the truth of the matter, as presented in scientific studies, as well as antecdotal summaries of treatment and case studies of what is working. That's why you often see me going on and on about Dr Cunninghams work. I have to laugh at Dr K's webpage because he has a statement on the pandas "phenotype" -and the mother, has "unusally high intellience, maybe mathematical or computer oriented, or they do something industriuous for work, and may have some OCD tendancies"- you have to be all those things to diagnose your own kid and FIND Dr K in the first place! a rather self fullfilling "phenotype". Think of the thousands of unlucky pandas kids with parents of average intelligence! No, apologies to your daughter are in order. Anybody that gets their kid into see Dr L is an exceptional parent, that has fought the establishment and even family memmbers to get their kid care. Good job dad. I'm telling you that because no one else can possibily know the amount of work and stress it takes to get to the point your at...so no one else is gonna give you the kudos you deserve. Except maybe your child someday...who might thank you sooner than you think becasue she's gonna start felling a whole lot better. So who are the 4? Dr B, Dr K, Dr T, and Dr L? Please tell Dr L to train an intern and make him/her move to Northern California! Thank you again soo much for your kind offer! I've been thinking I need to do more for this cause, and your offer to put up two perfect strangers, one with a known emotional and mental disorder has struck home to me. I'm buying a neighbor a cunninghams test, a small thing - but I'm thinking of running in a race or something to raise money and awareness. I'd like to do it under the new name though. Hopefully that is coming soon!

Anyone going to the conference this weekend? I know its lyme, but its Cunningham speaking as the keynote. I was really diassapointed with the CD I bought from the OCD conference where she presented, she had no time and flew through all this very complex stuff (an hour's presentation done in 10 minutes). Presentations ran over, and she had to leave to catch a plane. Yes it's a Lyme conference. I don't care. She is talking about autoimmune response to infection and antineuoronal antibodies, molecular mimicry...the same tests and studies that she is doing with strep...you say poe-panda and I say poe-lymes disease...(sorry, too much coffee today). I'm not interested in the debate of intial cause, more interested in her tests and studies showing infection and brain interaction..the only test we have to prove its not "all in our heads". Its in Philly at 8:15 (or 8:30) on saturday.

Anyone going to Lyme conference this weekend? I'm very interested in Dr Cunningham's keynote address. please share any notes or info - I am from the pandas board, so I don't check in here much...but if you post about Dr cunningham research, I think it should go on both boards.

We had some odd hyperactivity show up too. things will get better. Healing happens the same way the disease does - its saw tooth. Good moments and then bad. Good days and then bad...good weeks then some bad days. We've had some bad days here following a virus (at 7 weeks post) but, nothing like he would have been prior to ivig. And, the symtoms are just wierd now, not as predictible. And oddly again - just like post ivig - yesterday -very hyper, just like the first 3 or so weeks post ivig. And, hyper isn't one of his normal pandas symtoms.

wow - thank you for posting. I cannot wait to see that white paper and a new name. And I'm happy that one of the skeptics will be naming it - VERY, VERY smart ladies (kinda like getting my husband to think it is his idea, to do somehing I wanted done!) We on the West Coast are hurting bad. Just does not seem fair that all the pandas docs are in the east. Take it easy on the ex...everyone is trying to what they think is best. For most of us moms, dealing with the dads, especially in the begining, is very very tough. They aren't there as much, they aren't willing to accept somehting is wrong, or that decipline isn't the answer to improved behavior. Take a lesson from Dr L. - try to get your ex. to think the next decision along the pandas path is her idea!

I'm ok with 1.5...the 2 was just as much a crap shoot from what I can tell! According to Dr K (and this is absolutely, just antecdotal, in his expereince he's had better success with 1.5 than with 2)..he's a bit a cowboy, and I don't know how throughly he researched this before making that statement to me in August..becaue I wanted to know why we were getting only 1.5 - thinking 2 would be better. He said not the case, although 2 is what he recommended to EAmom...so apparently sometime after her daughters relapse he took a look at his data! Was there any info in the survey that Buster did that tells the level of ivig done and if another was needed? I think Diana's son only got less than 1mg on his second round of ivig..she had felt that after one day he had had enough. Felt his immune system just needed a little boost to right itself. Maybe it acted like a steroid burst would have. Guess she was right since he is in full remission.

Are you saying that your ivig only works for 9 days??? Does your child have a primary immune deficiency? I know that many pandas kids have some immune def. some worse than others. Can you give us examples of what her igg levels do? My DS is somewhat low, but doesn't come close to qualifying for this. Also, I was shocked to see that he had low igg and failed strep pnemonaie titeres - he doesn't get sick that often, and if he does, he gets well...at least from the virus (but it sets off his pandas) What I'd like see is a cunninghams test post ivigs - if we all agree that the anti-neuronal antibodies are what is messing up our kids behaviors/brains- that should correspond with behaviors. I really do think that primary immune def. treatment is another whole ball of wax. Pandas would be secondary no?

The way I read it is 1g per kg per day...where as we are used to see the total - 1.5 (weather administered all in one day or over two days). so they did 2. We did 1.5 ( I know this for sure becuase we were adjusting amounts given on each day because I had an early flight, so he got more than half his dose the first day, and little less the second.)

nevermind - its definatley 2. later in the paper it says 1mg/kg/day. Sorry.

I ws double checking, so I went and looked it up. I have it below. but am confused...does this mean a total of 2, or was the over all dose 1? (I'm probably just used to seeing to seeing the overall dose? - 2 or 1.5) ________ This from the study:( I thik this is the only study she did IVIG with..it compares IVIG to PEX) Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood by Susan J Perlmutter, Susan F Leitman, Marjorie A Garvey, Susan Hamburger, Elad Feldman, Henrietta L Leonard, Susan E Swedo ________________________________________________________________________ After baseline assessment, children were randomly assigned plasma exchange, IVIG, or placebo (saline solution) by randomisation chart. Investigators and study participants were unaware of whether the child received IVIG or placebo, but were aware of who received plasma exchange. Children randomly assigned IVIG or placebo received 1 g/kg IVIG (Gammagard, Hyland Division, Baxter Healthcare, Deerfield, IL, USA) or the same amount of saline solution daily for 2 consecutive days.

does anyone know what dose they will use in the upcoming study? man how I wish I could get into swedo's and Dr K's files to see what dose has highest sucess rate.

Joan so sorry you are going through this. Have you tried any steroids? Maybe you did them in the past and they didn't work?

Did you use 2 both times?

you bring up a good point RNmom and EAMom - I bet there are ALOT of kids being abused. I'm even a little guilty - ds's presentation was not dramatic and sudden over night - and we just thought he was rushing throgh work, and not trying at school, and being disrespectful. I remeber erasing a bunch of his homework once and making him do it over because it was messy (we thought he wa rushing through and being careless). He melted down of course. AGGGGHH. I still feel horrible thinking about it.

yes - it looks tic-ish to me too. So mild though. I was at a basball tournament this weekend, and three of the other boys on the team(besides my son) had tics (out of 14 kids), two eye blicks(one with facial twitch) and one a head strech. I'm sure they don't have pandas (well, I'm not actually, but I had to stop myself from approaching the other parents to tell them about tics,pandas and strep, because we are new to this team and I sound crazy..I'll feel them out when I get to know them a little better). it kinda funny, when the kids get up to bat, they ALL have these little tics or rituals they do..so they can feel "just right" before they take a swing. One kid turns is bat, round and round (like unscrewing a jar until just about to swing), one slaps his helmet twice, my son adjusts his batting gloves (every pitch) (he used to have SEVERAL rituals driving coaches, pitchers and umps crazy!) Our son also got better with antibiotics (and continues on full strength azithromycin) - he got better, but not all better. and as time passed (and after every cold he cuaght), he would add a symtpom to his baseline, making his baseline worse and worse. He was still functioning fairly well, but but our "normal" was not normal anymore. We are only 7 weeks post, and he had a cold a few days ago (still has it a little) and a very busy/stressful weekend, so a pandas-y few days here.

why 2? I asked Dr K. while we were in Chicago, why he does 1.5 - and he said that one would think that 2 would work better, but in his experience that was not the case - couldn't explain why - just that from years of trying different doses, 1.5 worked the best for him. Are u seeing a doc in California? Glad you are having improvement.

Thanks for the updates. Does Lauren ever get Cunningham tests? She's probably been stuck enough to last a life time, just wondering if any fluctuations from ivig to ivig.

yes, I'm assuming he has some primary immune deficiency? Not saying he doesn't have pandas on top of it (or becasue of it). That is a another question. Do the kids that only need one ivig, have heathly immune systems? ie - they pass the strep pnemonaie titers, have normal Igg, iga, igm and subclasses. I would consider my child borderline in that area - low igg (out of range but not low enough to be considered immune def.), low subclass 3, failed all but one of 14 pnemon. titers. But he has no allergies, and doesn't get that sick, that often.

this would make a great, yet painful, book Momto2. Have you ever heard of the book "Devil in the Details"? I read it about 2 years before pandas. Just because it looked interesting. And funny (the author with severe OCD and hypochondria is HYSTERICAL - her parents gave her an amazing perspective on her illness). As funny as it was, I'm sure if I were to pick it up again I would cry all the way through. Its a quick read if you are interested. I'm waiting for yours to come out!heck, maybe you should start a blog where each week you publish a couple pages of your diary and take readers through your story. http://www.amazon.com/Devil-Details-Scenes-Obsessive-Girlhood/dp/0316158771

2-3 weeks for the cam K result, and 2 more weeks for the anti-neuronal numbers. Sit tight, and let us know your results. Waiting is the hard part.

This is an issue that I struggle with. How to decide, because lets face it, very few of us have the priveledge of working with a doctor that is making recommendations regarding our child's care. Its all on us. My child is 7 weeks post IVIG. He got a cold last week. We have had a rough few days. So, this issue has come to the forefront for me, because it seems there are two schools of thought - 1. its a blip, just another bump in the bumpy road of post-ivig 2. he needs another ivig, becuase he is definately not 100%, not even 75% (but he is also definatley getting better - we have seen some symptoms disappear)...so THE TIMIG also becomes a question. IF we do another ivig now...maybe we have more chance of success because the illness is in a weaked state. If we wait and his pandas gets worse (and we KNOW how fast that can happen1) another ivig might only bring us back to where the first one did. I am thinking of testing his cunningham levels...I am hoping this will tell me if his system is sending out the wrong antibodies resulting in the CAMK anti-neuronal chain of events that convinced me had pandas in the first place. Then, I'm going ot do a Lyme test. (and mycoplasma - another thing I missed when cobbleing my own list of tests in diagnosing my child) Do any of the doctors that prescribe more than one ivig use the cunningham test? I don't get why not -I don't get why even the pandas experts don't use this test. I think its comical that these docs - prescribing multiple ivigs that are considered "experiental", poo-poo a test because it is considered a "study". I know at least one pandas doc that doesn't care about this test. why is it a "clinical" diagnosis...why can't this be a test for it?(along witht he clinic picture). Why don't they acknowlege it. After all, her studys on sera and mice are the only proof we have that is is an autoimmune disease. ..warranting ivig in the first place. So, tell me, are there people out there that are coming back normal on cunninghams tests, and still having symptoms, that are getting IVIG? Are there people with normal cunninghams tests and pandas at all? I'm desperate for some tool that will tell me if another ivig is the right decision.