amyjoy

While I'm already talking about the symposium I might as well tell you a little more about it.... We will have a wonderful session and facilitated discussion on dealing with the stress and the trauma and havoc of having a child with PANDAS as part of our family life. We will talk about trends, and who's doing what in the PANDAS world, what the White Paper says and means, whatever statistics are available, what's happening at the functional medicine level in terms of what we're seeing as co-occurring conditions, what other lab tests are being done to assess the greater health and metabolic pathways of our PANDAS children... We will talk about advocacy - advocating for our children but also advocating for recognition of the existence of PANDAS not just in the news, but in the medical world and treatment protocols and insurance coverage for our children. It will be worth the schlep.

WELL, i was at the one in Indiana in November and it was powerful, so i took the ideas i had and created it. You can also. It would help if you can come to the one in SF but even if not, you can do it. the Symposium will be big and awesome and moving and information rich. We even have a massage institute donating massage therapists for free chair and possibly table massages the entire day. We have networking events built in before and after the symposium and the latest and greatest in PANDAS research - Dritan Agalliu from UC Irvine presenting his research on the blood brain barrier and what exactly it means to breech it; and lots of info on tonsils and tonsil pathology - PANDAS treatment and Lyme with Dr. Schweig from Hill Park Medical Center in Northern CA and Dr. Margo Thienemann, a Neuropsychiatrist and one of the very early voices and proponents of PANDAS care; a session on how to manage education accommodations with Dr. Jamie Candelaria-Greene who is an educator and special educator and works with families out here to negotiate the battleground that schools can become as soon as you ask them for something special...and so much more... here's the website www.pandasparentsymposium.blogspot.com

HI BORDER COLLIE, If you come to the event...you may just find out in person since we will be having a special guest open the symposium....

We had one family get their DS's IVIG covered through Anthem BCBS in California after contacting their Senator to intervene on their behalf. That's about it. But I believe there is more and more precedent for it and for pushing for it. But this is what i want to know - if one of those girls from LeRoy ends up needing IVIG, with all that press attention - do you think there is ANY WAY their insurance would deny that coverage???? That's what I'm waiting to see.

Hey COCO I tried to PM you about that toothpaste but got the message your box isn't accepting new msgs, maybe full? anyway would LOVE to know the info on that toothpaste. My DS had 8 cavities last checkup, because he has celiac which we didn't know for so long eroded the enamel on this teeth. So we've been using enamel support but would love to get my hands on that toothpaste. can you post or PM me? thanks]amy

Hi Michele Steroids are used in pandas/pans and help to diagnose whether or not that level of inflammation associated with pandas/pans is present. in that case, you'd see the symptoms go way down - but only for a period of time usually, they come back. there are consequences to using steroids long term, it can damage the immune system (which is why for example they are used to prevent rejection of a kidney that's been transplanted, or if someone is having a huge immune response to poison oak). but we need our immune system to work in general. Plus if kids have lyme or other coinfections, we're a little afraid to use steroids because we're afraid those other infections might get a stronger hold, not sure what others think about that. High dose steroids also interfere with tissue building a bunch of other things bodies need to do to grow and be healthy, so its a fine short term thing not long term treatment for our kids. Better might be to maybe take a look at some additional lab testing that could help you understand the bigger picture and anything that might be adding to the neuroinflammatory stress your DS is experiencing. There is a current post by browneyesmom where she is looking for some of that info and a number of responses on that post, maybe it will help you. there have been a number of prior posts about additional testing you can probably search for. good luck

Also for food sensitivities it helps to look at IgE (inborn) plus IgG (developed sensitivities usually due to some kind of GI stress, malabsorption, inflammation or leaky gut but can add to the inflammatory burden and can actually go away once you heal the GI) and IgA (which are gut-based antibody responses to foods). Allatesse does a great job with really good pricing on the IgE and IgA, like under $150 for something like 90 or 120 IgG foods plus 20(?) IgE foods. for the IgA, you would need a stool or saliva test and i can't remember at this moment who does the saliva testing for that.

Just voting on the kind of heavy metal you do - i don't believe hair is a good specimen for screening. The reason is that the metal has to be actively excreted to really show up in the hair. Most of the time, that's not exactly the case, the metal is sequestered and bonded into the cells unless there is either some kind of provocation forcing the excretion big time and over time for it to show up in the hair, or, if you happen to catch the hair sample that grew exactly following some huge exposure. And that's possible but less likely since often the exposure happens gradually over time, and the metals which are super powerful electromagnetically ("heavy") happily enter the cells and wedge themselves in there kind of like an electromagnetic parasite and live happily ever after. so to test them, you either have to go into the cell and look for them (MicroTrace Gmbh in Germany does this kind of specialized and its easy to use a labkit to get it there and is not very expensive plus it looks at intracellular mineral levels as well) OR you can use something like the DMSA challenge. The dmsa pushes the metals or attracts them, actually which is how chelation works- out of their little comfy haven and excretes them in the urine, then you do a 6hour urine collection and send a sample off of that for testing. There are several labs that do that testing, we usually use Doctor's Data and I think its under $150 still but don't quote me on that.

oh my gosh i'm so excited and even breathless and grateful that we are pulling together an awesome event by parents, for parents. If you'd like to find out more or register, here's the website: pandasparentsymposium.blogspot.com We are creating a Scholarship Fund and hopefully this will help some of us incredibly financially strapped parents attend if they really need the help. I was hoping we would see more sponsorships for this purpose, to lower the cost of the event to parents (which is actually still pretty low - $55 for the entire day including lunch and speakers and everything....but I had hoped it would be still lower). Anyway, I hope to have the chance to meet some of you at this event. Many Blessings amy

Awesome, i will update you with agenda etc, but also keep checking the website! the rooms are now available for reservations, there is a link on the blog.

Hello all I want to let you know about this upcoming event. We were so inspired by the Indiana parent meeting and wanted to keep moving the gathering energy forward. http://pandasparentsymposium.blogspot.com/ In addition to parent speakers, we are inviting the "experts" and PANDAS providers to address us as a group with the latest. More information will be forthcoming shortly about this. We are looking for sponsorships of any amount to defray the costs for any parent to attend. So we don't know yet how much the event itself will be...somewhere between 0-$50 for the whole day including everything and food etc. There is a discounted block of rooms available and we will be posting the link for booking them by the end of today, Saturday. The event will be at Embassy Suites by the SF airport, with a free airport shuttle. The rooms will be $119 and includes a full made to order breakfast, and a Happy Hour reception that we will use as a gathering time for those who are staying at the hotel on Friday evening before the event, and again on Saturday evening after the event for those staying over Saturday night. Book only through the link provided on the event website for the discounted room rate. Hope to see everyone!! If you know ANYONE who might be willing to donate any amount whatsoever from $10 to $100 to $1000, send them to the website. BLESSINGS TO ALL! Amy http://pandasparentsymposium.blogspot.com/

...Just wondering if that is in our near future. Recently took DS15 off of Zithro just because he gets alot of gut stuff so i thought i'd give him a break. I tried using Andrographis as some others have done, 400mg three times a day with plenty of probiotics, although i must admit sometimes he would miss a dose. Within 2 weeks, a strep throat. the same thing happened in september when i took him off and tried OLE as others have done, and within 2 weeks he had full swing strep pharyngitis. normally his tonsils are small and don't look infected. the good news continues to be that even with crazy strep there are NO noted PANDAS symptom exacerbations aside from a very small tic in his ankle at bedtime. for this i continue to be incredibly grateful. any thoughts / experiences out there? thanks alot

these are some of the ICD-9 codes we submit on superbills depending on what we see but they do have to be in addition to the most accurate descriptor of their symptoms (tics, anxiety or OCD etc): 323.62 Post infectious encephalitis 279.3 Unspecified Immune Deficiency 279.4 Autoimmune otherwise unclassified 348.30 Encephalopathy unspecified 392 Rheumatic chorea Who knows if they help or not??

We recently started using the LDN with some of the children with PANDAS we are treating in our office and are in the middle of assessing the effectiveness. I will be happy to report back. It makes alot of sense to try it because of the autoimmune issues, as you said.

Also, i believe that the plasmaphoresis will bring about a quick reduction in symptoms because it gets rid of the malfunctioning antibodies, but the symptoms come back because the body still makes the same antibodies. The ivig effects can be more enduring because it may help the immune to produce healthier or more normal antibodies.

my son had severe celiac disease along with PANDAS, and in our office, at least half of the PANDAS kids we have tested thus far also are somewhere on the celiac scale, in fact definitely more than half! You can try asking your MD for a celiac test, and i would recommend a stool test instead of blood as the blood has a high false negative rate. if getting a test is hard to do, you can try taking your son 100% off of gluten as a test, but, that is challenging and it would realistically have to be for a solid 8 weeks to really know. but for many kids the stomach problems associated with gluten go away within days or a couple of weeks of being gluten free.

in our office where we've seen around 15 -20 pandas kids this past year, we haven't found rheumatic heart disease in a single one. i was thinking about that recently. we were originally worried about that with my son's PANDAS because one of his pediatricians thought he heard a heart murmur but his heart is fine and no one else ever heard the murmur. i wonder also about potential kidney damage that can come from rheumatic fever, but haven't seen that either, except one person.

also i would just chime in that the psych meds don't usually work with our kids the same way, because their PANDAS symptoms are due to inflammation and not necessarily the kind of chemical imbalances that cause OCD.

its been almost 10 months sinceDS15 has had ivig. its helped him tremendously but i can't call it a cure for him as of yet. he had a backslide over the summer. i have heard that coming up around 7 or 8 months post-ivig this happens alot. now the last couple of weeks, he is doing fantastic, better than ever. he says his coordination is drastically improving and his sleep is good, anxiety gone, ocd / intrusive thoughts minimal or absent, but the tics still flare and come and go although they are mild. in our office, we have done ivig on maybe 10 children with pandas this past year. i am definitely seeing that the tics are harder to really clear. the psych manifestations seem to respond more readily. however we don't have any child treated with ivig for primarily tics with PANDAS for whom its been a full year since their treatment, and my understanding is that it can take that long for the treatment to fully manifest. so the jury is out.

how wonderful for you and your family and your DS!!! last week a child came into our office in the early stage of pandas, within weeks of the onset of symptoms. he kept putting his hands on his head and saying to his mom "mommy i feel like my brain is swelling". well, yeah. they do know.

HI Wilma, Just jump in and do it. If your child really has PANDAS, you'll see a positive change. You all could use one!! Just, do it.

It must feel just so good to have these moments, of having your DD back. I hope you have a great night's sleep.

I would imagine that there is a scale of severity, recruitment of B cells and damage to the basal ganglia cells. I would also imagine there are dozens or maybe hundreds or more variables, from genetics to actual strep serotype to nutritional status, co-infections, immune function, stress, just so many things. So some percent of kids will "grow" out of it and some percent of kids just won't. The danger is the minimizing attitude of oh, my child will just grow out of this or oh, this patient of mine will just grow out of it so i don't need to do my homework and be aggressive with it now.

I think that with the recent health care bill, insurance companies cannot deny coverage for children with pre-existing conditions. Adults, well, that's a different story.

Of course it makes sense that all the abx can wreck this kind of havoc in the intestines, and yes i guess there is a chance of an increase in bleeding potential with the supplements. Probably good tho to work on rejuvenating that lining in whatever way you're comfortable, mucilagenous herbs, foods, aloe etc can help, slippery elm, stuff like that. good luck with it. amy