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Diana

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Everything 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. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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 t
  8. 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 n
  9. 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
  10. 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
  11. 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
  12. 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 som
  13. [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
  14. 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
  15. 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!
  16. Hi EAMom - well, I just report what she said! But, I think I have heard mostly that it is true - mild improvement is seen within one week. But, well, there is always a situation where it may not happen. It is a difficult thing.
  17. 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
  18. 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 b
  19. 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 dur
  20. 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.
  21. 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
  22. 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,
  23. 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 thi
  24. [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
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