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Diana

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Posts posted by Diana

  1. 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!

  2. 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.

  3. 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.

  4. 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.

  5. 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

  6. 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

  7. 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

  8. [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

  9. 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.

  10. Hi Tired Mom,

     

    I'm not surprised by this. Nicolades and a few others look for "classic pandas" - high titers and recent exposure to strep.

     

    There are several teenager successes that I know of. The kids are early on post-ivig (about 2 months) but doing well. There are of course, some cases that don't respond so well - but Dr. Kovacevic is hands down - the only guy in the world who could help you and has experience with this.

     

    Email me privately if you want the parents to contact. I'm so sorry for this disappointment. diana

  11. Sorry - to clarify - the December uptick lasted all of 3 hours and scared me. But it went away. He is fine now.

     

    Repeating additional IVIG's at month 2 or 3 doesn't give the body time to let the CamKinase die down?!? We don't know for sure. It is white-knuckle time for parents and we just have to watch. Within 6 mos. there will be more stories of cure or no cure. We just need to be a bit patient and TRY to trust the doctors who cannot show their records to us.

     

    Latimer, Trifiletti, Kovacevic, Swedo - they are all pretty certain that a TYPICAL pandas case (sudden onset) should get better. If the child has had pandas for a very longtime - for years exacerbations -- go to Kovacevic. He has the most experience with the long term cases. They will be more difficult. That is sadly logical. You guys are all heroes. You're paving the way. The stories are being collected......or you're doing it.....the more the merrier.

     

    Let's hold hands. Be Patient. Steady as we go. In 6 mos. more good news. In one year even more good news. Let's hang in there.

  12. One more response from California - we have a little cluster of pandas here - thank you Buster, EaMom and SFMom. The 1.5G per kilogram was measured out quite specifically per unit of blood/body/igg volume. The 2.0G that Swedo came up with was a typical dose used for Guillane Barre.

     

    I have recently talked with Swedo and she is agreeing that Dr. Kovacevic's dose of 1.5G/1kg is sufficient. But, hey, if you have the money - do more. The bottomline is IT TAKES TIME for the CamKinase (Cunningham has measured) and the requisite auto-antibodies to die down. I measured my son's CamKinase during exacerbation - approx. 180 above normal. Then 3 months after IVIG - 165% above normal - he was symptom free at this point (last August). I asked Cunningham, "How can it be he is symptom free with this numbers and high antibodies?"

     

    Her response: "Likely it is the T-Cell and B-Cells fighting off the antibodies. Doing the hard work IVIG should be doing and replacing the bad and bringing in the new. It takes approx. 6 mos for the IGG's to entirely fall off post-ivig." I measured his CamKinase at 6 mos - and she was right - CamKinase came down to 102% - NORMAL. He continues to be "normal" in his behavior. My son is now nearly 1 year post-ivig (Case #1 on the pandasnetwork website) and I'd say pretty darned near without symptoms. I'll keep you posted. I say "darned near" because when my 5 yr old daughter had Fifth's Disease early December - he had a uptick in pale face, dark eyes, and strange mouth grimacing. I slapped it down promptly with an increased dose of antibiotics.

     

    The bottomline is - this is a battle that the body is fighting. At 3 mos. post-ivig give or take a few weeks; either the IVIG would have succeeded or failed. I think the numbers you see above bear this out.

     

    THIS IS NOT A PERFECT RECIPE to cure any illness. There is a PROBABILITY. I am working hard trying to get Swedo and others to document our cases clearly. I am sending out an email to those that are part of the tiny-PANDASNetwork website. A lot of us are working on this front. If the "NEVER GIVE UP" mom wants to contact me (or maybe I know you??!!) please do so. I hope this helps folks.

     

    There is always a chance that some children have other factors that are inhibiting kids progress. I am hearing this over and over again: 1) other family members have strep that wasn't noticed by the parent; 2) autism; 3) a history of severe family autoimmune illness.

  13. Hold on folks! Look - the current definition is ABSOLUTELY sudden onset of ocd, sensory issues. It is a horrible catastrophic onset. THIS IS THE CURRENT DEFINITION OF PANDAS! PERIOD. It is true that some kids could have been struggling for quite some time. Then - these kids should get their titers checked. Often they will be elevated sometimes not. So then what is next to do?

     

    If a child has PANDAS - truly has this - they should see some level of improvement in approx. 2 to 5 days on antibiotics. This indicates a bacterially induced infection --- which is the DEFINITION OF PANDAS.

     

    A lot of problems: autism, tourettes - they can have autoimmune links, of course. I created the pandasnetwork.org website only with the sudden onset cases in mind. EAMom's observations about her daughter definitely show it can be a longtime in coming - the catastrophic onset. But make no mistake about it --- EAMom's daughter did have a sudden, debilitating onset. THIS IS THE PANDAS SYNDROME.

     

    Any other definitition - is just not there yet. You can consult with the few specialists there are but folks --- this is beyond the capacity of parents you are discussing this with. It is conjecture and it is unfair.

  14. Dear folks - I don't sign on the forum often enuf. But I read this thread on Sensory stuff --- and I really think you should be alarmed and take this seriously. This indicates brain inflammation. Neurological changes (besides the OCD) often mean the reoccurrence or increasing severity of an exacerbation.

     

    I hope the kids who have this are on antibiotics and/or getting some motrin or prednisone from an understanding doctor. I know it is a struggle for everyone to get help, and I hope you do have help. best wishes, diana

  15. Joan - my son had a T&A with titers just like that (about 600). Our ENT's partner - his son had pandas and did the T&A. They kept my son (age 7 then) on Azithro which he had been on for two months and it had much improved his pandas symptoms. So, Kept him ON the Azithro and followed with 5 days of PREDNISONE (liquid form). They explained this would keep inflammation down and speed healing. They also said "It will help the Pandas."

     

    At that time I didn't understand the significance of that -- but, there we had ZERO issues during and after the surgery and in repairing. In fact, he responded beautifully to thw prednisone and we were symptom-free of PANDAS for about 2 weeks after that. Hope this helps. diana

  16. The antibiotic results will be the same whether the ASO/D-nase titers raise or not. I have now tracked pretty clearly 60 cases. There is no difference. Sometimes there are comorbid problems - underlying chronic intracellular influenze bacteria, ebstein's barr, pneumonia bacteria - etc etc - that if parents do not get decent bloodwork go undetected. Not only the strep but a comorbid issue will keep the illness running. That is when 5 to 6 weeks of daily antibiotics will prove effective. There is not one child, if treated and looked at carefully -- who does not seem to get better. But this is the trick isn't it?? finding a smart, curious doctor.

  17. cam kinase II score is 186

     

    normal control 92

    positive serum control 256 (to ensure test running correctly)

     

    Is really the only take-away the 186 number, and compare to chart 3a, looks a lot like PANDAS, not surprised, only question now is what we can do with me. (Assuming the 92 and 256 don't provide any useful information.)

     

    Dr. K. is willing to work with me, has worked with a couple dozen post-puberty cases, but needs a local doctor to prescribe and go along. I am going to an integrative MD, second office visit Monday next week, and we'll see if he can/will, but may be a bit over his head, who knows. My other thought is an immunologist, perhaps he can recommend, or perhaps anyone here has a good idea on how to find an immunologist in the Tampa/St. Petersburg/Clearwater Florida area that might make sense for this situation.

     

    Michael

  18. [Dr. Kovacevic, Dr. Latimer and another mom (who has done PEX and understands the various issues of ASO/D-nase, etc etc) - are speaking as well as Beth M. at the Autism One conference. So that is all clear.

     

    The good thing about her book, along with the recent Kaplan/Gilbert, Neurology, study on Pandas/Tourettes which just came out -- the GOOD thing is that these two recent publications have really angered Swedo and others that understand that pandas is a real illness.

     

    I am finalizing the PANDASnetwork email list (about 350 people now?) - and then will solicit anyone who would like to get their "story" to Swedo. She wants to compile our stories and really prove how exceedingly familiar EACH STORY is. Dr. Nikolades who treated Sammy -- has only treated 10 pandas cases (she told another mom this in July I believe) -- and Beth M. has told me she is not current on ANY pandas research.

     

    I have reached out to Beth M. early on before her book was published and she chose to do her own thing. I hope as she becomes more educated -- and really the doctors need to reach out to her, Swedo, Trifiletti, Latimer, etc. --- and help use her as a good vehicle for information. I sent her latest "update" to Swedo and others. The 4x6 card Beth M proposes may be a nice idea: BUT SHE NEEDS TO GET INPUT FROM Medical professional - namely Swedo -- who would gladly educate her.

     

    If anyone has Beth's ear ---- encourage her to email Swedo. I know she would encourage her to be more accurate and more helpful.

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