kimballot

Thanks Buster - between your description and the diagram I think I am getting something logged into my brain. I do have a question, though, about the endothelial cell in option C - Where did that come from and why are the autoantibodies NOT binding to the APC once the IgG binds to the endothelial cell? Sorry - I am trying to understand this better. Thanks The paper then indicates that IVIG works by either: Saturating all the Fc receptors on the APCs so APC never presents the auto-antibody Binding to a suppressor mechanism (currently unknown) that prevents the APC from presenting any auto-antibodies Binding to Fc receptors on the endothelial cells so auto-antibodies have no place to attach and die (a) makes the most sense to me -- but who knows. Buster

Is this referring to the provocation/neutralization testing that Dr. Rapp recommends? She does test for allergy to histimine and gives sublingual drops for kids with this allergy. We use the P/N approach and I can share contact information to call if you PM me - if this is what you are referring to.

Peglem - That is a really good question and it is the same question my pediatrician asked me. My son is going to be exposed to strep and other antigens no matter what - so why not just put him on an SSRI to mask the symptoms and get on with life? I guess I am still working out my answer to that. If he needs to be on an SSRI he will be on one, but not until I have made his body as healthy as possible. If IVIG can reset the system, then will the BBB will not be open so we can get on with life without his basal ganglia being attacked? If I can keep him healthy and use anti inflammatories , can we avoid another exacerbation, or at least respond quickly when there is an exacerbation? If I can find out what is causing the problem (strep, mycop, etc) can we use medication to get the offending substance out of his body and keep it away for a while to calm his immune system down? So many questions. We need a book on the parents guide to PANDAS. How about some of the parents who've been at this a while and who's kids are doing well get together to work on that! We see Dr. B this Wed. I hope to get some of these questions answered.

Thanks SF, Mirilina and Vickie - Also, the NIMH website talks about this a bit at http://intramural.nimh.nih.gov/pdn/web.htm - though that info. is a little old. It is good because it is written in language that I can understand. If you are looking for actual studies, I think the idea of mimicry was from Christine A Kirvan, Susan E Swedo, Janet S Heuser & Madeleine W CunninghamS in 2003 when they studied sydenham chorea. The abstract for this is here http://www.nature.com/nm/journal/v9/n7/full/nm892.html but I cannot find a full-text version for free online. They went on to study how this mimicry might affect neurological functioning in PANDAS and that 2006 article is available in full text at http://intramural.nimh.nih.gov/pdn/pubs/pub-19.pdf Again - this is my limited interpretation of this work. Buster can be of much more assistance.

My understanding (limited) is that the main problem with PANDAS/PITAND is the inflammation piece. The inflammation allows a breach in the blood-brain barrier, which allows antibodies to cross and interact with the brain (normally, the blood vessels in the brain only allow select nutrients to cross the BBB to get to the cells- far more selective than in the rest of the body). This can happen in hyer or hypo immune kids. The other piece I am getting is the idea of molecular mimicry, which says that infectious molecules can change their surface to look like parts of our body, in hopes that the body will not attack them. In the case of PANDAS, the strep has changed itself to look like the basal ganglia. The body then makes antibodies to the new strep - and those antibodies attack anything that looks like the new strep - including the basal ganglia. IVIG adds new antibodies to the blood - thereby reducing the concentration of old antibodies. For some reason, IVIG calms down inflammation (I really do not know why), which closes the blood brain barrier. The new antibodies help those with hypoimmunities to fight off any nasty things in the body, and helps those with hyperimmunities to fight things off so they don't have to continue to produce antibodies (I think that is how it works). Prednisone also helps to calm down the inflammation to close the Blood Brain Barrier, but does not introduce the new antibodies like IVIG does, and its effects are often temporary. Also - add to this mix- some kids are having these reactions as a result of something OTHER than Group A strep (eg: mycolasma, lyme)... so their strep tests are going to be negative, with low titers, even if they have good immune systems. Not sure how much of that is accurate, but that is my thinking at this point in my PANDAS journey.

THanks, KCD. That is good info.

Thanks - very interesting. I am wondering about the type of pneumonia they induced "Klebsiella pneumoniae". I don't know what that is or if it is something our kids could contract. I am wondering if this is generalizable to mycoplasma pneumoniae, since so many of our kids seem to test positive for that.

I just noticed a psychologist from CA on the medical advisory board for the PANDAS resource network Dr. Pamela Varady Clinical Psychologist Family Therapy/Family Skills Therapy Santa Monica, CA www.askdrvarady.com www.learn2listen.com Perhaps she could direct your toward a medical doctor who is PANDAS friendly in CA.

I do not live in California, but I think we are all struggling with the same challenges of finding a doc who is a PANDAS expert who can make reasonable assessment of our kids and give us direction. I've done a phone consult with one doc and will now be traveling to visit another doc. Whether you do a phone consult or travel I highly recommend getting a copy of every medical record and organizing it before you speak to the doc. I used an excel spreadsheet that the doc sent ahead of time and it made our conversation go very smoothly because we could both see the same info. while we were talking. The phone consult was EXCELLENT and really helped to educate my husband and me. Check with your local pharmacy and blood draw center about regulations from out of state docs. They may not need to be in -State for routine drugs and bloodwork. You also need to make sure your insurance will cover it if it is ordered from an out of network doctor (my insurance did not cover the cost of the consultation, but does cover any blood work or medication recommended). That being said, having a phone consult or a visit with a doc is not the same as having a local doc who can see your child, do a physical assessment on a regular basis, and help you to make decisions. You might want to look for a doctor that is at least PANDAS friendly even if not a PANDAS expert. I just recently found a local doc who is an MD and a family practitioner (does all ages), who also offers acupuncture and low dose allergy treatments and other eastern medicine in his office (though he does not actually do the acupuncture or allergy treatments). I thought he sounded open minded enough to at least listen to me. He is probably the closest thing to a DAN doc around here, but he treats all ages. I set up a consult with him and went in without my son. I went armed with some of Buster's info (thanks again Buster) and some of the most pertinent medical history notes form my son and I told him my story. He had never heard of PANDAS, but said he was interested in learning more and was supportive. He is very willing to work with the recommendations of the PANDAS Docs that we are consulting with. He sees my son for the first time in a couple of weeks, but who knows - maybe I'll be adding his name to the PANDAS list eventually! Best of luck as you work your way through this. If you want more details you can PM me.

Buster - WOW!! I had no idea there was this much evidence!! Thanks so much for posting

My son has had multiple work ups for immunology issues through his 13 years and - looking back- mycop was always negative. The last work up was 3 years ago with negative myco p. Fast forward to 2010 and Dr. T had us redo the blood work a month ago and myco p was positive. He thought, from the numbers, that the infection was probably a couple of years old... sure enough, 2 1/2 years ago my son had one of his worst OCD episodes and he had negative ASO titers and throat cultures at the time. Had we known to look for mycop we may have been able to treat it and shorten the exacerbation. It is so worth checking into.

Worried Dad - yuck! That is quite a story about the eye! Sinus infections are nothing to take lightly. I do have a friend who ended up with a brain abscess from a sinus infection. You are correct that sinus infections often do come up on this forum. My son is ONLY sinus infections - has never had a positive throat culture and ASO titers have never been elevated. What is it??? Is it still strep? I wish I knew. He's had a couple of sinus surgeries, but he was on ABX so long at that point that the only thing they cultured was fungus (which BTW is a huge cause of sinus infections, so please be sure to talk with your doc about doing an antifungal if you have chronic sinusitis). We need an article in print that looks at the relationship between sinus infections and behavioral exacerbations in PANDAS kids. The focus on strep throat is too narrow and we are missing many kids. I know my local docs have refused to back me on the PANDAS idea because of the lack of strep throat.

My kids take all big pills with a big spoonful of applesauce. Just take the big spoonful and shove the pill in the middle - then swallow without chewing. It has worked for years. You may need to practice with just the applesauce first.

We used to do suprax when my son was very young, for sinus and then for prophylactic - it did not really do the trick for him, but his sinus infections are stubborn.

Now Isn't That timely! Let's comment!!

Thanks - I can understand some of the conflict about including PANDAS / PITAND - especially since there are likely different subgroups of PANDA, the role of strep is not clear, and the name may change in the next few years as we learn more about the disorder. It seems that having a classification for medically-based tics and medically-based OCD is a good thing, though, and can serve as a diagnostic category that represents our kids better than the general Ticss or OCD category.

PEX - plasma exchange Herxing - herxheimer reaction

Thanks, Buster, Memom and Vickie- I did not realize that DSM IV TR had this medically based anxiety disorder as a classification. From Vickie's link, it looks like they are keeping the disorder but possibly removing the following: C. The disturbance is not better accounted for by another mental disorder (e.g., Adjustment Disorder With Anxiety in which the stressor is a serious general medical condition). I also noticed that the proposed DSM V has a similar medically-based tic category (go to http://www.dsm5.org/ProposedRevisions/Page...n.aspx?rid=395). It looks like the DSM V is open for comments. I don't know if they are looking for comments from families and patients (though I think we should all register and comment)... it seems that it would be good for some of our healthcare providers to comment, though - I've not been on this forum long. Are we encouraging the PANDAS docs and other healthcare providers to be involved in this?

Chemar - - very true. We are on our second course of abx and a round of prednisone for a nasty sinus infection right now. To be honest, I did not even realize it was sinuses until the ENT saw him. He is finally coming around and we've had 2 days of doing homework without breaking pencils and raging for the first time in months. If allergies are a problem... you might want to check sinuses too (of course along with strep)...!

DS's primary PANDAS manifestation is OCD, so he would shower 10 times a day if I let him! Good suggestion, though. He does shower after dinner, before bed, as a general rule. But he's got this long, thick hair right now, so who knows what it harbors between showers! Can't get him to cut it though, and I have to pick my battles. Ugh! Yes... middle school boy hair requires mothers to have the patience of a Saint! - Plus my son likes to do the head twist / hair flick... which turns into a tic when he is sick... then a sore neck and back! It was so much easier when he just did a brush cut!

Handwriting goes from bad to worse and he becomes oppositional when he has to write anything. Teachers get baffled because "I know he could do a better job if he tried - I've seen him do it at the beginning of the year". We have accommodations that allow for written or typed notes sent home before every test, teachers check his assignment book to make sure we can read it when he gets home, and he or I type his work.

Be sure he showers at night before bed - my son hates this now that he is teen because it is not cool... but too bad - he can shower again in the morning if he wants to - we're getting the pollen out of his hair before bed!

I feel for you! It is scary. If you think it might be related to allergies - here are some things we do - One thing we use for allergies (in addition to the usual zyrtec, rhinacort, and allergy low dose shots)... is Gastrocrom. It is good for food allergies - it is a mast cell stabilizer and it is supposed to prevent food allergies. For a while we used it before every meal - then down to once a day, now we use it as needed. The thing with allergies is that it is that "barrel" effect - the allergies accumulate through out the day. If your allergy load is low, (meaning that you have not experienced any allergens yet that day) then if you go to school and sniff mold or dust mites, you can deal with it without a reaction... But - if your allergy load is already high (meaning, you breathed pollen and dust mites when you were sleeping, got up and ate a food you were allergic to, went outside and sniffed the freshly mowed lawn) then went to school and sat in a room that had some mold... BAM - the mold (or whatever the most recent allergen is) sends you over... even though you seemed fine with it yesterday or last week. So - we try to hit it at all levels... try to make his room as allergy-free as possible so he wakes up with as light a load as possible... and go from there - especially in the spring.

Thanks for posting! Sounds very positive!

Thank you, thank you, thank you for taking the time to post! All the best to your family!