Diana

Thank you very much for finding this Vickie. I hope our network of parents can assist in encouraging NEW ONSET pandas cases in participating in the study. My understanding is that they will be focusing on Severe Onset cases. The naysayers have viewed many of the severe onset cases videos of children and are sufficiently alarmed to agree that this type of study is needed. Terrific!

So SFMmom - did you son do the Igenx test and did it show lyme? or is it just the clinical picture? It would be helpful for people to know what Igenex turned up for him.

Hi folks - I will send the spreadsheet around via email and or someone can help me post it here. It was about 12 families out of 200. Usually though it may be due to the strain of strep. One child gets pandas and then a few months later - another child.

It was just pointed out to me she has two CD's one she calls the Nuts and Bolts of PANDAS by she and Sammy for $14.95 and the other some sort of interview at a book signing for $9.00 The parents on this forum have worked really hard to find research and spent many many hours supporting each other. This is where the limelight should be. And, should I ever be "interviewed" by some fabulous t.v. show or local press ---- this is where the light would shine on everyone's efforts.

Hi Folks - I'll be sending out an email from Latimer's office regarding the loss of her son tomorrow. They asked me to wait a few days. Beth and the gals in the office are devastated beyond words.

Oh last comment. The document is $27.97 - $1.00 per page, much if with a simple question or two and blank sections for your comments.

Dear Grace and other Parents: Her "tool kit" lists in a very nice and simplistic way the OBVIOUS things we need to do for pandas kids. That is fine - it is benign, largely useless information. The PANDASNetwork.org that I wrote outlines this info nearly identically, though, yes, her format is lovely. I have asked Beth on several occasions to unite with me for the sake of the parents - to have a joint website -- she didn't want to in part because my sight has "medical advice." What the heck is this? The docs are moving as fast as they can to get material together for this summer meeting and in the Fall more material will be forthcoming. There is a gap in time now between medical info, advice and parents seeking the advice. I give it to her. She is a great lawyer and is finding an "in" where there is a gap in information. I am creating a new format to the PANDASNetwork website that can be updated frequently and easily. It is all free to parents. I just do it because I care - as does Buster. And we are "professional" enough to know we are not physicians and don't have the right to charge for a "new illness" that docs are working hard to ACCurately articulate. GRACE - if you need a connection in Texas. Email me at pohlmandiana@yahoo.com and I'll get it to you -- free. AND, I'll talk to you for FREE. I hope this helps Beth DONATE her $27.97 to her Foundation. Where the money is really needed. I have emailed, called her and asked her to do this. Maybe it will happen.

Kim and Buster - well, you know, these guys are so brilliant they outwit themselves! The biggest issue is they did not get the kids at onset of symptoms - they were sailing on and ill for quite some time before the study occurred. TO THAT END: the new IVIG study as I sort of understand it, that Swedo will get rolling soon I hope!, will look at kids ONLY at the onset of PANDAS. It will only be 30 kids so this is sad but it will be very extensive with the bloodwork -- yes, looking at all the IGG's and underlying co-infections, white blood counts, etc etc - I certainly don't know all the numbers. Dr. Cunningham's test will be used. A strep expert will TRY to figure out the serotype of strep that is causing the problem as well. The naysayers can talk circles around doctors that really don't care about kids with PANDAS; they are too tired to pay attention to the many failings in the study. Dr. Kurlan has NEVER seen an acute onset of pandas.....he has no clue how these kids have suffered. He has seen mild PANDAS cases that present with tics and mild ocd. To make matters more confusing, Swedo told me as I mentioned in a February memo to parents, that she didn't realize PANDAS kids react to bacteria/viruses OTHER than strep. At least Kurlan and Kaplan got that part right. Swedo is wrong to insist that PANDAS is STREP related only -- it is an AUTOIMMUNE ILLNESS -- and maybe Kaplan and Kurlan and Swedo can lay down their swords and AT LEAST agree with that. Dr. Leckman wrote a paper on kids with tourettes having Dysgammglobulinenmia in early childhood. The clinical picture for kids with "dysg" is pretty bleak - likely pandas kids are like this too. Borderline quite weak immunologically. The cure for "dysg" - monthly IVIG. I think Kaplan loves his strep and that is the big problem. Weird dude.

Thank you for posting your thoughts and your struggles. I am speechless, which is rare for me, trying to imagine what you may have been thru. As a parent --- when my son was ill (ages 7-9; "cured" post-ivig at age 10 now) -- I froze inside, my worry for him was so intense. Sometimes I was so angry about this illness. When I read your post I imagine that he/you can get thru the hard times just fine. Thank you. diana

OOPS Correction! Should have said "Kids who are in their INITIAL ONSET!!" NOT exacerbation. OKAy- so the study is for kids who are having their FIRST, INITIAL onset. tx, diana

Hi - yes I know a bit about the study and it is currently under scientific review at the NIMH. Dr. Swedo hopes it will pass muster by the end of Summer if not sooner. Currently it would sadly only be for kids who have had the FIRST exacerbation, only 30 kids. They want to prove so specifically that it occurs and then it remits with abx - that there is a sudden and specific, dramatic onset. The fear of letting kids in that are having a 2nd exacerbation is that they may not #1 get better with one IVIG alone and #2 - would give room for critics to say that the kids have some other strange infection....etc. You get it. They will be looking for brand new pandas cases....god forbid. I hope this helps. PM me privately if you need me to fill in more as I don't sign on often for now. Take care, Diana Menlo Park, CA

Hi - not sure if we have corresponded before on the PANDAS Network? The steroid burst can sometimes take up to a week or two to show results. I have heard this in about 4 or 5 families. So perhaps you can be patient. But, really, if there are other factors - health, recent illness - going on perhaps this had an affect. There are more and more "long-term" pandas cases coming up now that most of the parents I don't think have a lot of experience with. It is a new area in the last few months since Saving Sammy came out. I do know that Dr. Kovacevic has had some very good luck with some recent long-term cases - he is the ONLY doctor qualified to really understand these cases I think. I hope you'll reach out to him. www.webpediatrics.com My feeling too - is if you're doing IVIG - it is wise to do some bloodwork to look at your sons' IGG's and IGA in particular. Kids with TS can often have low IGA and you need to be careful with certain types of IVIG if this is the case. Hope this helps a bit. diana

[DebC - I've talked with 3 girls and 1 boy that have outgrown this at puberty and 4 girls who have not (now ages 21 to 25). I talked with Dr. Swedo in Washington DC a few weeks ago and she said in her estimation (no one has tracked the cases) that is a 1/3 will outgrow just with help of antibiotics; 1/3 need IVIG; 1/3 will carry it into adulthood. She never tracked kids with IVIG or just antibiotics. She feels Dr. Cunningham's CamKinase tells the story that the person's autoimmune system is overreactive and has a problem dealing with strep. It makes sense to do a immunological workup to see if there are weaknesses in the IGG's, etc etc, etc. You're right - it is uncharted territory and I am TRYING to get the darned doctors to review the 200 cases I've compiled. But Swedo has failed me at the moment. What I can see is this: Some kids HAVE to HAVE IVIG because antibiotics begin to fail over time. It seems to excerlate healing. The children I do know that are older and are on antibiotics only - are not well-adjusted kids - tend to be more anxious and fearful and loners. BUT IF YOUR DAUGHTER IS FUNCTIONING HAPPILY - there is a mom I can connect you with who has a similar daughter; doing well --- then, maybe you'll be just fine. No one has followed these kids over a very long period of time. I can just connect you with a lot of moms and you'll have to use your wisdom. Let me know. pohlmandiana@yahoo.com

Vickie - all autoimmune illnesses make a person weak when they have an exacerbation. Swedo's NOT understanding how significant viruses can irritate these kids who usually got sick BEGINNING with strep -- is sort ridiculous. I have mild m.s. - and when I've had an exacerbation (NOT when I'm doing really well) -- a cold, a cough really lays me out heavily for a few days. It is just like PANDAS. For me it is incredible fatigue. For the pandas kids --- a myriad of mood issues. I have seen with my son now that he fully recovered (seems to be) -- he is strong and doesn't react. But, you know, time will tell. By the way, my first big M.S. exacerbation -- it took me one full year to get back to normal. And I have been nearly 100% fine for 10 years. UNTIL, PANDAS exhausted the heck out of me. Now I'm nearly at the end of the one year recovery and like my son....seem to be fine.

Hi there! We talked about your case --- it made the docs really hopeful that when all else fails -- they agreed -- the high dose abx must be tried. so THANK YOU TOO!