norcalmom

I'm so sorry to hear about our son. You may want to get the pandas blood test panel from Moleculera labs. It measures autoantibodies, and indicates if your child may have success in treatment with immune modulating therapies. IVIG and steroids mainly, although some people are now using other therapies as well (cellcept etc) if you are scientific, you may enjoy downloading and reading the research papers on that site. You will still need to look for any signs of infection. It isn't just strep - mycoplasma and Lyme, and other infections can trigger pandas as well. So people use bloodwork for figuring that out, as we'll to see if there are ways to improve their immune heath. I would get in to see the best pandas doctor you can, as soon as you can. Kids get better, most of the time. My child is 90% better. Many kids are much closer to 100%. It looks like you have found both drT and drK- you are in good hands. Dr K usually does IVIG at a dies of 1.5. Most other docs do 2.0 ( and that is what the NIMH used on both their studies) just something to be aware of. But 1.5 seems to work- dr ms been doing this for a long time. It is scary. I wish I had more words to comfort you, but I'm still here for a reason. My child is much better, but not all better. My child had a similar presentation to yours. He ended up having chromic mycoplasma. He also does not make many pneumococcal titers- only 2 - (well he makes more now but 3 years ago when this started it was only 2). Check out Moleculera.com for more on those tests. Welcome to the forum. You will find lots of help and support here.

We like Vit D. A lot. I think that it has helped DS aot in turning around his underlying infection, improving his immune function. Never had any exacerbation a related to taking it.

Not a bad review of mycoplasma and it's extra-plumonary complications and autoimmune implications. Use of steroids, immunotherapies, etc reviewed. http://onlinelibrary.wiley.com/doi/10.1111/j.1469-0691.2007.01834.x/full

Numbing cream for arm(we use lidocaine you doctor has to prescribe)- definitely get. I'd also make sure to get the Cunningham panel of tests-these are the only pandas specific tests- if they ate high you know you are dealing with autoimmune issue. If they are normal, probably not autoimmune, for many here, these are the tests that made it clear our kids have pandas. ALOT of kids have pandas without ever having strep, and strep is so common among school age kids- it's pretty normal for the to have elevated titers( kids without pandas, the general population). That's why it's so difficult to diagnose If you are seeing a pandas specialist you are in good hands, but I'd still ask about the Cunningham test. It won't tell you what infection your child may have or had that set off the autoimmune reaction. Or if your child has any immune system anomalies, but it will tell you if your child is making autoantibodies to their brain tissue. It's like a screening test. Good luck- and I think you are absolutely doing the right thing. So many kids get misdiagnosed because the doctors they see, although well meaning, dont have the experience to decipher pandas from regular Tourette's or OCD. We got a transient tic diagnosis from pediatrician, and a probable Tourette's diagnosis from a neurologist before getting a correct diagnosis- once I sought out a specialist on OCD ( that I noticed after the tics) AND pandas. Also - never did have a raised strep titer or positive culture . BUT in retrospect did most likely have perianal strep- about 2 months prior to when he started ticcing. I only discovered you could have strep in other areas 2? Years later. So your pandas doc knows his her stuff- if they are doing rectal swab. Cunningham tests from Moleculera labs- http://www.moleculera.com/

I edited the post above to a different link to the same abstrac (link was broken) t- see if that works for you. Thanks- sorry about that!

Ever since reading Bruhners book, I've been interested in herbs- but- which ones to use in pandas is a complex question. His book talks about stopping the cytokine cascade in infection, but which cytokines to up regulate and which to down regulate with pandas specifically is difficult to say. Below are two articles I found this morning regarding research on which herbs to what to which cytokines, and another article on cytokines in Sydenham Chorea- closest thing to pandas I could find, and unfortunately I can only see the abstract. I thought that some of you using herbs or researching cytokines may find it interesting, and please let us know if you've tried anything on the list and your experience! http://www.anaturalhealingcenter.com/documents/Thorne/articles/Cytokine.pdf http://www.ncbi.nlm.nih.gov/m/pubmed/12620654/

Anyone have access to the paper she just wore ? Title is "Autoimmunity: An infection- related risk?" Its in this months "Current Opinion in Rheumatology".

Hi Vicky, I saw that Madeline Cunningham published something called "Autoimmunity an Infectious Related Risk?" yesterday. Any chance pandas network can get a copy for their site? Here is link to the article( I can't read- not a paying member) http://www.ncbi.nlm.nih.gov/m/pubmed/23689638/?i=10&from=Cunningham%20M[au] It's got to be her right? I was really hoping for a paper without a question mark at the end.

DS had very weird things pop up- like bed wetting for 3 weeks every night post IVIG- (which he would only do in exacerbation- for only 2/3 nights, and even then it was only like a "leak". Post IVIG he soaked himself every night for weeks. But he also had things completely disappear. I'd say we saw things even out at the 8? week mark. Definitely by 3 months post IVIG. His mood however- was greatly improved from the very first day. It was very weird, and we did see him do something that he had not done in a long time. But we had heard that "turning back the pages @ was to be expected. In "Brain of Fire" they describe healing from NMDAr encephalitis as the symptoms reversing the order they are presented in. They literally go backwards. I think pans kids are similar, maybe little less linear.

The book is awesome. But- its really hard to use his treatment with kids (at least with my kid). You have to take SOOO many herbs/supplements- most of which are either in tincture firm or dried herb form- taste icky. If you can find tablets- then you have too many to take- since as he states- these are really medicinal foods. You have to take a lot for them to have any effect. The tincture taste disgusting- so there's no way DS will take them. He inspired me to read several other books and everything I could find online about the herbs and the medicinal properties of a few that seem to make sense for my son. I am trying to do something similar to what he does and Walhs did for DS. Find specific substances for his situation, and prioritize them. Use of adaptogens really seem to make sense, and since Cordyceps is a really good one, as we'll as having two other modes if operation- antiinflamatory and ( forget ...third) I've introduced that into DS routine. Has to take 4-6 tablets per day for that alone, so it is really hard to do more than that although I would like to. Going gluten free isn't an option, and we did that for a month early on with no results, so the stress it would introduce to DS probably now worth it. I'm trying to focus on things that are good for him to incorporate, rather than eliminating things. Adaptogens help body to figure out how to react - to create cytokines, or down regulate cytokines. There are several different kinds of cytokines- they aren't all bad ( it's all about balance anyway). Since no one know which cytokines in PANs kids are out of whack ( yes- this reasearch has been done in other immune diseases, but they are often different- even opposite) If you read Bruhners book, you already know all that. I decided the safest one to try first would be an adaptogen. And to try to get more fermented foods into his diet, rat a Brazil nut per day, cook his meat rare, let him eat eggs like crazy- and since he likes sourdough, switch him to sourdough (wheat if possible) (levain) bread. (It's fermented- so I've read that even wheat sensible people can eat it). Read that from account of woman that out her lupus into remission mainly with increasing fermented foods and raw milk products. I'm going to post some of the books in another thread when I have a chance. Read some very interesting things- decided to thiw a very wide next to see what commonalities I could between many disorders similar to pans.

I went to the you tube link above (thank you) and there was another really good video series there - by Dr Terry Wahls. I've heard of her before, but I had never seen any of her stuff. The six part you tube preso it pretty good. Paleo diet focused.

LLMD stands for Lyme Literate MD. Getting a full Lyme work up- by an LLMD can be very helpful, even if your child doesn't have Lyme. 1- they are really the only qualified doctors to rule it out, or if they can't rule it out( because the tests for it are extremely unreliable) they can at least give you a risk assessment for it 2- they know more about antibiotics than ANY other doctor you will meet, and if they suspect Lyme or any if its co-infections (which my son had) they will know the best way to treat it. I hope you can get a hold of Swedo. I would imagine she knows a doctor or two that are at your hospital. One of the best pandas researchers, Mady Hornig, is at Columnia. She is a researche not a climician- but between Swedo and Hornig -,they may know someone with privileges at your hospital. The right doctor is key. 99% don't have a clue- or think they do based upon reading the NIMH website. You need an experienced pandas doctor. Here is Mady Hornigs web page. You could email her and ask if she is aware of any docs with pandas experience at your hospital. Good luck and keep us posted on how your daughter. http://www.mailman.columbia.edu/our-faculty/profile?uni=mh2092

I am sorry you worked so hard to see him and this was your experience. He's not a pandas expert. He's and NMNDr expert. Go see a doctor that has a lot of pandas expertise. You may not get a pandas diagnosis, but at least at that point you will know that a doctor very familiar with the disorder you suspect has evaluated him before you move onto something else. I'd also like to see his data on "anyone off the street" having raised camKII and anti neuronals. Sounds like his arrogance speaking.

Is you son on IV antibiotics, or just the oral? I second trying to increase antiinflamatory. Have you tried Advil for 2 days every 4-6 hours? Not that you can do that long term, but some here have found it helpful( but, I personally only think that works if person is not already in severe exacerbation...and sounds like your son is righ now) also - may not want to try that at same time as some if the herbs, and it check for any interactions. Let us know if something helps- I hope you find something soon.

So sorry to hear about your daughter. I want to second getting the pandas test from Moleculera, contact Dr. Swedo directly and tell her your child's symptoms. Although she may not be a candidate for Dr Swedo's NIH study, if Dr Swedo has said she will try to help with severe cases, I would very much try to get a hold of her directly. Also - test for Mycoplasma Pneumoniae. Make sure to get one that will give you an absolute value for the IGG result( they test for both IgG and IGM). And if the IGM is negative, and the IGG is above normal- you need to retest in 7-8 weeks (?) - to see if the IGG is going up, or down, or is the same. Some people don't make the IGM is they have had MycoP for a long time, so retesting is the only way to find out if you child has it. Don't listen to the docs- for whatever reason they have all been taught that IGM is the only indicator if current infection. 3 doctors I asked about this (including a Stanford immunologist) all had to eat crow when we reran this test and they saw my sons IGg going up, even tho IGM was normal. You can probably google Dr Swedos address thro the MIMH site. I wish you the best with getting your daughter the help she needs. I am also the trigger for my so - it's different - no rituals, just rage/obsession- but it's so hard to be responsible for helping them when you can hardly be in the same room.

Many Antibiotics also have immune modulating effects as well as anti- inflamatiry effect. I think that Azithromycin (?) was originally developed as an anti-inflamatiry(may have been a different antibiotic) Regardless, if may be the "other" properties of antibiotic that are sometime helpful in our kids. For flares not obviously associated with acute infection- and if if they are- I think the most tried and true results have come from antiinflamatory med. AND - to continue the dosing for 2-3 days just as you would a high fever that doesn't "break". If your child can't do antiinflamatory med like Advil- use liposomal curcummin, or other herbal anti inflamatory- but they aren't as strong, so use through out they day, and do it longer. Many of us have our kids take that everyday( I do, well, most days), and reduce foods that may cause inflammation- (sugar, white breads....milk, and anything you think they may be sensitive to. Hope those suggestions help. Sometimes, nothing helps except letting it run its course ( usually 4-6 weeks) or IVIG. I completely advocate trying to get on top of it as EARLY as possible. Over the years I've found that I can usually put a soo to a flair if I get it early, and aggressively treat with any antiinflamatory and stress reduction measures I can take for 3 days. (We use Advil) plus curcummin. I also usually knock back anything else I'm giving him- so he's only taking the antiinflamatory for 2 days ( no other vitamins, maybe just probiotic). I do that because its just too many pills, too much going into his system.

Second mistake today! Title of the post should be anti- ganglioside , not anti- Lysoganglioside. I initially though this was the same autoantibody that Cunningham tests for, but it is a different Ganglioside M vs Lysogangloside. But, still very interesting article! I wonder if those kids would have a raised CamK .... Interesting!

I made a mistake- (read to many articles that I can barely understand) RLS usually has low brain iron stores, (it's some of the others that are the opposite). Here's a really good article on it- the iron effects dopamine, and B-12 and folate ate talked about as well. http://www.thorne.com/altmedrev/.fulltext/12/2/101.pdf Good luck!

I just came across this. http://www.jneuroinflammation.com/content/pdf/1742-2094-8-39.pdf

In autistic children

In autistic children

Actually reply was meant for original poster ( didn't really read details of all other replies) because the Restless Leg Syndrome was one that to recall reading about, perhaps being related to hyperferrineria (sp?)

The numbers look like the range for pandas. For pandas they are not exceptionally high, they are in pandas range. Did you read Cunninghams paper from 2012 on Tubulin as target in syndendam chorea? Did it say what the anti Tubulin was for that group? SC is usually a little higher for anti neuronals and cam k than pandas. Cunningham used to include SC vs pandas levels for cam k in the report when it was part of research study. But now to find it you actually have to read her old papers.

Have you done IVIG?

I've read some interesting articles about RLS and low serum ferritin- and too much iron in tissues(brain), due to abnormal iron metabolism. My so too has low ferritin, all other blood markers normal. It's complicated to figure out if you should take iron or not, and after all the stuff I've read, I'm thinking of seeing a hematologist just to make sure giving iron is the right thing to do. In most cases it is, but there's a lot of literature on iron and brain and immunological disorders, and since more iron in certain situations that present with low ferritin can be really bad, I'm thinking of perhaps taking one more step to rule them out before supplementing. Just google low ferritin and brain, or autoimmune, chronic infection( that actually usually elevated ferritin- hi ferritin is marker for inflation) or , gut, or absorbtion, or gene ... for more information.