P_Mom

Yes...she suggests it even if your child has no problems with their tonsils. But, she doesn't require it...just strongly suggests it. I have seen Dr. K, T and L. If you pm me , I can give you the skinny on them all. lol GO STEELERS!!!!

Hi Christianmom! Our PANDAS doc, Dr. Latimer, suggested tonsil removal for both my PANDAS sons. By the time we went to see her, my older son already had them out due to 100% airway obstruction of his left nasal passage (from his adenoid).......we didn't need another reason..but, we were glad because we wanted to do it for PANDAS anyway. Now, 3 years later, we just had our younger sons tonsils removed based solely on PANDAS. (in Nov) We told the ENT about his bad reactions and, although he was not familiar with PANDAS, he was familiar with Sydenham's Chorea. I told him it was like that....that he gets bad OCD and tics. He didn't question me any more and said...."by all means, lets get them out." They looked fine on examination, and, my son only had two documented strep infections. It was great he did it for us. After removal, the perfectly normal looking tonsils ended up to be "very infected." We were floored. My son had no exacerbation from the procedure (some do)...only improvement. We saw Dr. Latimer recently, and she recommended it for him before we went any further with anything.....(IVIG, etc....which, we don't need at the moment.. I pray it stays that way) She said tonsil removal is the thing lots of these kids need. I told her the ENT said they were cryptic with pus...she said good thing we got them removed....she said antibiotics do not reach into those crypts. In no way do I believe this is a cure...but, I do believe it can be very beneficial to many PANDAS kids. Like Latimer said.....your kids (meaning mine) problems are with strep....do whatever you can to eliminate the source of the problem. The ENT said tonsillectomy (we also had adenoids removed in both) can reduce the incidence of strep up to 80%...however, it does not eliminate it...but hey...I'll take 80%! Hope this helps. It is always a hard decision..for us particularly for my younger son because he had added concerns and risks involved with the procedure(non PANDAS related)...it was really hard...but, I had good docs on board and was reassured he would be fine. Plus, lots of prayer. He did great!

I have some input to the Whooping Cough thing. Both my boys contracted Pertussis (whopping cough) 2 summers ago. They had both received full vaccination for it as infants. The illness was not near as bad as my older sons reaction to his kindergarten shots. Yes, the coughing sucks, but, the PANDAS symptoms from his k-shots were worse. Combine Pertussis with Diptheria and Tetanus in the shot (as well as all the other junk in there)...well, you are getting much more insult to your child's immune system than natural Pertussis causes. Plus, the shots didn't even provide them immunity to Pertussis! (they do have immunity to tetanus and diptheria though) As far as the children who died (which is tragic no matter what).... those are infants. Infants are the ones who are most at risk for serious consequences of pertussis, and the vaccine is mostly designed for them....children and adults, well, it is mainly just a big nusiance with no lasting or serious consequences.(My Dad got it too from the kids while he was visiting from Fla.) Personally, having gone through it...I'd easily take Pertussis (and the flu) over what the shots do to my PANDAS kids.

My son is 11 and had these titers checked.....he still has immunity to the illnesses covered in this vaccine and he has not had any shots in about 7 years. They always say you HAVE to do it because they want you to....but, the truth is...you don't.

Just so everyone knows....I am sharing everything I can. I have no specifics on dates or what the outcome of this research will be. Remember, it is research, so, who knows what will come of it....we can hope for the best. Atleast someone is researching PANDAS and trying to give us answers....hope, etc. All I have to share is what is posted...sorry, but, we are going to have to wait........."the waiting is the hardest part."

Pepsi funds have been used to begin experimentation on antibody producing cell lines previously produced in our laboratory from Pediatric Autoimmune Neuropsychiatric Disorder(PANDAS). Our hypothesis is that autoantibodies are produced against the brain after infections and can signal receptors on neuronal cells in the brain to be abnormal and cause neurologic, movement and behavioral disturbances. We wanted to study the immune cells and the anti-autoantibodies which may be the cause of the disease. First, we hired Dr. Jonathan Zuccolo, a B cell immunologist from the University of Calgary. The funds allowed us to be able to hire an expert in antibody producing cells (B cell immunologist). Dr. Zuccolo has begun to grow and investigate 3 groups of human hybridoma B cell lines producing autoantibodies from PANDAS. The cell lines were cultured by tissue culture in Iscove's Modified Dulbecco's medium and the antibodies produced by these cell lines were analyzed for reactivity with brain autoantigens which may be targeted in PANDAS. These experiments test for binding and then also for functional signaling properties of the autoantibodies which may be their mechanism in disease. These studies will use the second half of the PEPSI funding to complete these experiments. We will acknowledge PEPSI in all published works from this study.

Good idea...I will send the request to Chemar. Thanks!

Does Your Child Have PANDAS? Did your child suddenly change after a strep infection? A child with sudden repetitive or obsessive thoughts and behaviors after a strep infection may be able to take part in a treatment study. The National Institute of Mental Health and Yale Child Study Center want to know: Do children with PANDAS improve with intravenous immunoglobulin (IVIg)? What you need to know: All children will take antibiotics to protect against possible future strep infections. At the start of the study, some children will receive IVIg and some will receive placebo. This is decided randomly (like the flip of a coin). All families can choose to receive IVIg treatment after the first 6 weeks. Children must be 4-12 years old. Their repetitive, or obsessive-compulsive, thoughts and behaviors must have suddenly and rapidly appeared after a strep infection. You do not have to pay to join the study – it’s free. Plus, travel expenses are covered. Want to know more? Call ­­­­­­Megan at 203-737-5588 or email meg.smith@yale.edu Pediatrics and Developmental Neuroscience Branch Protocol No. The National Institute of Mental Health National Institutes of Health, Department of Health & Human Services Pending

More than likely, yes...it will be negative. It has happened where people get a positive, but not often at all. The increase may be due to exposure to strep or any other illness (viral)......it should wane down with some time.

Are you sure it is an actual deficiency and not just low IGA? Having low IGA does not automatically mean you have a deficiency.........what was the number and also, the reference range? It is common for PANDAS kids to have low IGA....but, many of such are not considered to have an actual deficiency and IVIG is not a risk in that regard. (unless it is a true deficiency)

Exactly Buster! Cunningham went over that study and said his controls were terrible.......... they included kids that already had disorders.

I wouldn't worry about this. Worried Dad is right...it is just a republication of the old Kurlan and Singer report. Cunningham showed me a graph of their study. (yes, Cunningham even studied their study to find out why he was getting what he got). In a nutshell...his controls were REALLY screwed up......enough to make the study invalid in Cunningham's eyes. This was a poorly orchestrated study. I am sure Cunningham would be happy to back that up. I would just ignore it. (unfortunately, many won't)

Cunningham is participating in this study. She and her staff will be running their labs on the children in the study before and after IVIG.

No, she didn't. Sorry, that is all I got.

"We are doing great and with your funds hired Dr. Jonathan Zuccolo, the B cell immunologist from a university of Calgary in Canada and he already has excellent data using the funding that you sent. We are using your funds as stated in our application for his salary plus some laboratory supplies..... We planned to use your funding to continue the project as proposed. His study has been very clear about the autoantibodies in humans with the PANDAS type of disease."......Dr. Madeleine Cunningham WE ARE MAKING PROGRESS! Thank you so very much to all who supported Pepsi Refresh Project PANDAS. Special thanks to Vickie. PANDAS, in and of itself, will get the recognition and acknowledgement it deserves. Our kids will get the recognition, acknowledgement and treatment they deserve! Our hard work will not be in vain. Our children's suffering will not be in vain.

Wow...I have never seen such high IGA and IGG in a PANDAS kid! Usually (obviously not always)...those numbers are on the low end.

Have you seen Dr. K's web-site? http://www.webpediatrics.com He gives a good description of PANDAS. You will see it mention that most parents do not recognize the signs the child gives of their PANDAS before the "big explosion." (the initial signs of PANDAS in both my sons went over our heads...hindsight is 20/20) The fact that your child exhibited behaviors beforehand does not at all mean it can't be PANDAS.....it actually supports it.

My advice...go to a different doc. Most of us have traveled to one of the PANDAS docs out East. (I am from PA...we see Latimer in Maryland/DC area). My older son had a very rapid remission of his PANDAS within 48 hours of antibiotics. It is almost 4 years later and he has currently been symptom free since June.(many bumps along the way) He has never backslid to the place he was when he presented...however, he has been kept on proph. antibiotics since onset. PANDAS does come back with a vengance (many times getting worse and worse) with each strep infection...so, avoiding strep is a must. Also, you may start to find your child reacting with PANDAS symptoms with any illness and immune challenge, (allergies, vaccines, colds, flu, etc)...although the episodes are usually not as severe as with strep. This seems to have been cought early.....your child is responding rapidly to antibiotics...you have the opportunity to keep this controlled without (hopefully) having to go onto more agressive treatments. I am no doc...but, I have two PANDAS kids. This sounds like a PANDAS case to me......don't miss this opportunity....go to a PANDAS doc. (not one who claims to know about PANDAS because usually they don't really know...go to one of the specialists if at all possible)

Strep Throat is in Group A. These bacteria can also cause meningitis, pneumonia, and "flesh eating" bacterial infections. The bacteria are not like viruses. Instead of injecting genetic material into the cell, the bacteria live without a host cell. They will form a long string and sit on the back of the throat or mouth. This is what forms the white blotches or spots seen when a person has Strep Throat. Streptococcus is a spherical-shaped bacterium that forms small chains. The word -coccus is Latin for circle or sphere. Bacteria can come in many shapes, like spiral or rod shaped. This distinguishes bacteria from one another. Streptococcus also has pili, which are used to exchange genetic material. Streptococcus is a prokaryote, which means it has no nucleus. Yet, this bacteria has DNA and ribosomes. Streptococcus contains a flagellum, allowing the bacteria to move.

Strep Throat is in Group A. These bacteria can also cause meningitis, pneumonia, and "flesh eating" bacterial infections. The bacteria are not like viruses. Instead of injecting genetic material into the cell, the bacteria live without a host cell. They will form a long string and sit on the back of the throat or mouth. This is what forms the white blotches or spots seen when a person has Strep Throat. Streptococcus is a spherical-shaped bacterium that forms small chains. The word -coccus is Latin for circle or sphere. Bacteria can come in many shapes, like spiral or rod shaped. This distinguishes bacteria from one another. Streptococcus also has pili, which are used to exchange genetic material. Streptococcus is a prokaryote, which means it has no nucleus. Yet, this bacteria has DNA and ribosomes. Streptococcus contains a flagellum, allowing the bacteria to move.

This thread would also be very helpful on the TS forum. Please also post there, that would be great!

Just FYI...I didn't intend for this to be on the Lyme forum. It got moved.

I think Fixit just had that done. Maybe she will chime in.

It is under a thread I posted... "Some Notes From Cunningham." Too tired to figure out how to post the direct link...but, right now it is on page 8. Hope it helps! I also found interesting the fact that many patients with rheumatic diseases tested with a false positive IGM......being that PANDAS has been "likened" to Rheumatic Fever.

I thought this was good. A research study on the accuracy of the Lyme Western Blot and the Dot Blot. Please note the very high incidence of false positive Elisa's (one study states 90 plus percent...this is the initial screening test)...also, the high false positive results of the study for IGM Western Blot. Another key point is that universally, ALL subjects in this study with PROLONGED illness or Lyme arthritis converted to IGG and all were IGG positive for Lyme. This study supports Cunningham's statements. I can't find a study (not just "this doc or book said"...I mean an actual research study) that shows that people can have persistant IGM elevation with chronic Lyme without the presence of IGG reactivity. I know IGM can persist...but, IGG reactivity should be with it. Am I missing something? (And, like I said...not just "my LLMD said," etc.) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC95608