jan251

My child has anti-GAD65 antibodies. We have not tested CSF. My rough understanding is that these antibodies indicate an autoimmune process is going on and that there's inflammation. We did not see these prior to IVIg infusions. (Sometimes IVIg is helping the immune system work better and it may start producing measurable amounts of bad antibodies as it kicks into gear?) Our immunologist is trying a slightly different protocol with our next infusion, using a different brand and including prednisone, to try to get the inflammation down. We tried solumedrol with our last infusion and it was not helpful. We have been infusing roughly every 3 weeks. It sounds encouraging that you are seeing some gains. What is the rationale behind 5-7 weeks? That sounds in-between the 3-4 typically recommended by immunologists and the 8-12 typically recommended by non-immunologist PANDAS docs.

and a third: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5174185/ (full text link)

adding another new study: https://www.ncbi.nlm.nih.gov/pubmed/28121463 http://online.liebertpub.com/doi/10.1089/cap.2016.0031 (full text link)

http://online.liebertpub.com/doi/10.1089/cap.2016.0105 (full text link) https://www.ncbi.nlm.nih.gov/pubmed/28140619

Bumping to ask the same thing. Can you tell us about your Restore experience? When did you start, what dose, what symptom change looked like, any side effects, etc.? I'd love to hear more! Have you continued to use the skin cream product from Del Scientific (formerly known as Astridian) that you told us about? Can you separate out the effects of that from the Restore? Thank you!!

Thank you for posting this - very, very interesting! If there were a way to undo the effect of the Miralax, any ideas on what that might be? Seriously, if anyone has any ideas, please post! Adding, I found the article over at NYT with comments. https://www.nytimes.com/2015/01/06/science/scrutiny-for-a-childhood-remedy.html

Isn't plasmapheresis not recommended when there's current infection? I'm not very familiar with it, but I was under the impression that the risks are high and the procedure expensive. Would something like rituximab be a bit less risky? Have any of the various treatments brought relief from symptoms? Did the IVIg help? Is there an immune deficiency? FWIW, Florastor is bad news for my child. It very quickly increases OCD. My child also gets red ears though I never did quite figure that out. It's hard to tell these days when he has headphones on all the time at home.... If I recall, there were several possible causes and I narrowed it down but now I can't remember what my thought process was.

I'm listening in - I have the same questions. I think Duke might be using this also. I'm only just starting to look at this, but my biggest question will be whether my son's particular symptoms are really worth the risks and/or side effects - I have no idea yet though. Have you seen improvements with IVIg, but just not enough? Or no improvements? Adding, there are some older discussions in this forum about this med: https://www.google.com/#q=rituxan+pandas+site:latitudes.org desperately sick/starting Rituximab infusions - what to expect ...

Random thoughts: I haven't given japanese knotweed since we started IVIg, but I can't imagine it would be a problem. Anti-inflammatories are generally recommended for reducing side effects from IVIg anyway. What I might wonder is more about the unknown - is there lyme (or some other germ) such that the knotweed is doing something but not enough to get rid of it. I might want to try a few days without the japanese knotweed just to see if anything happens, does he get a bit worse or a bit better or stay the same, etc. I would be concerned about the ASO staying high and not coming down. It can take a long time (it has taken 2.5 yrs for my son's to come down from 800 to 300-ish). But it would bother me if I saw no movement in the number. Maybe the IVIg would help with this. It would make me more comfortable to be on some form of antibiotic with a high ASO. Also I don't understand: The LLMD doesn't believe in lyme (that wouldn't make sense), or your PANDAS doc doesn't believe in lyme? Have you seen an immunologist? I don't think it's a big deal to try the LD IVIg. While there are anecdotal stories of LD making things worse in the presence of lyme, we didn't see that at all (though we did combo antibiotics for lyme prior to starting IVIg, we didn't see any improvement in OCD; no clue about the lyme really, as I wonder whether our son's bands on the WB reflect something else that's not lyme). I would think that if subQ didn't cause a problem, then the LD wouldn't either. But, if it doesn't help after a few months, I'd be asking again about HD. LD will supplement the immune system, whereas HD - the thinking goes - may shut down the production of bad antibodies. just my two cents - good luck!

Without looking it up, I think laughing gas is nitrous oxide (NO). I have a rather vague recollection that people with particular genetic polymorphisms (probably MTHFR, among others) have difficulty clearing medicines and toxins, but I don't remember what it is about NO specifically that is a problem with MTHFR. It is well worth googling. Two of my kids, including my PANDAS kid, are known to be compound heterozygous for MTHFR but I'm not sure if they've ever had NO. PANDAS kid has had a number of medical procedures and it's possible he had some NO prior to the IV being placed for his cardiac catheterization - it was a few years before onset of PANDAS though. I am homozygous for MTHFR A1298C and I know I've had a bit of laughing gas on a few rare occasions earlier in my life, no issues. In the big picture, the percent of people with MTHFR polymorphisms is not small, and yet commonly there aren't a lot of problems with NO, with even pediatric dentists offering it. My concern would probably be along the lines of pandas exacerbation and if the NO can't be avoided, instinctively I'd load up on liver detox (NAC or milk thistle if the child tolerates those). Maybe there are other genes involved. Have a google and if it's a problem, maybe IV-conscious sedation is the way to go, without the NO.

I'm not sure, but maybe try this group https://www.facebook.com/groups/129017327268769/

If you can't speak, can you write, email or text to them? Really try to communicate things even if you can't use speech. (My speech triggers compulsions in my son, so sometimes texting him works well as long as we're not in the same room... because my touching the phone also triggers compulsions if he sees it, sigh.)

I'm so sorry. I have a 15 year old dd too. Your parents are only trying their best, as we all are, through this complex maze. It's very hard to know the correct path forward. Try to keep the big picture in mind, inflammation causing neuropsychiatric symptoms. If it were me, I suppose I'd ask them to take you back to the NP if possible. If the lyme was diagnosed by a blood test, that complicates the picture and I'd try to find a lyme-literate doc (LLMD). There are a lot of angles for treating without pharmaceuticals, if non-pharmaceutical supplements would be more attractive to your parents. For example, they might consider NAC and inositol, which have some research for OCD, though like many other treatments, it can take weeks to see results after ramping up to dose. Also, curcumin - I recall when I first started researching PANDAS, there were some online anecdotes about some fortunate kids improving from curcumin alone, probably in part due to the anti-inflammatory effect. There are herbal protocols for lyme. Often people with PANDAS have vitamin deficiencies or imbalances due to genetic defects in methylation and very particular vitamins can help. Unfortunately, there are no simple suggestions and no PANDAS treatment is one-size-fits-all. There might be a number of pieces to the puzzle. My only real suggestion is to keep the lines of communication open with your parents. Let them know about symptoms you are feeling, timing, severity, etc. Something I often say to my son with PANDAS is that I cannot read his mind - he needs to talk to me.

I didn't go to the conference, but will throw in my two cents. From what I have read, 4 days is an older, relatively standard way of infusing high-dose (2 g/kg) IVIg in other, non-PANDAS conditions. I might guess that it is easier for side effects than a two-day infusion. If you saw good results, I'm not sure that the 4-day protocol would be related to the return of symptoms with subsequent infection. FWIW, it seems to me from reading forums like this one that one-and-done IVIg for PANDAs is the exception rather than the rule. One-and-done is probably wishful thinking on the part of certain docs.

Hi bws, do you have any further report on changes in symptoms in the past month? Herxing, anything unusual? Thanks!

I don't know if there's really an answer - not a single answer, anyway - though certainly there might be some pieces you could try to find (23andme). My general feeling is that my son's low vitamin D level is just a sign of inflammation, a correlation rather than a cause. My son also seems to react negatively to vitamin D (more OCD!) and he is deficient (28) though he hasn't been checked in a long time. He is also high for calcitriol. He is homozygous for the VDR taq mutation. My thinking is that additional vitamin D will not help if the vitamin D receptor can't take it up. On this angle, you might read about the Marshall protocol, if I am remembering the name right - very controversial of course, but the ideas resonated with me, particularly calcium channel blockers. Alternatively, if additional vitamin D revs up the immune system to produce more bad antibodies, that could be an answer too. For me, a little extra vitamin D helps me to be more productive, though I have a point where I will get insomnia if I have too much or too many days in a row. (I still need to do my own 23andme; I bought it recently but haven't sent it in yet.) I can't figure out the B12 thing either. My son is compound heterozygous for MTHFR and has several other relevant polymorphisms (COMT +/-. one MTRR ++ and one MTR ++). Every now and then I study the page at heartfixer, hoping to absorb more. There are even more problem genes I am finding every time I find a new gene site (health 7 I think is the name of my most recent find). Methylcobalamin seems to have no effect. 5-MTHF (I'm probably remembering the names wrong) seems to have a negative effect. There are so few people who can reliably guide in this area and it take so much time to figure out. I will need to deal with it eventually - we have all this data, but what does it really mean? LOL I have a sibling in Europe who is doing 23andme and will probably get a fancy analysis and I'm hoping he'll be able to recommend someone for analysis. On the B12, it seems to me that various theories are just a guide but ultimately trial-and-error rules. What I don't understand is what that means in the practical sense if you start a supplement and it makes things worse, whether you endure, need to add detox for liver or something else, whether you just stop, etc. A simpler approach is... Walsh I think is the name? Low histamine, undermethylation, add methionine, inositol, B6, etc. This approach also resonated with me and it seemed mildly helpful though we always fell off the wagon with so many other things going on. My son has an immune deficiency and we moved on to IVIg hoping to at least reset the immune system somewhat. I have a hunch that something with glutamate is related to his OCD issue (e.g. minocycline was a problem so I'm not sure in which direction glutamate needs to go) and thus I'm not interested in dealing with seratonin (SSRIs). I have no idea what a Regional Center is. For my son, there is too much unknown, and too much cutting edge, to get much out of mainstream medicine until the time is right, until we have set the stage for success with, say, CBT. Plus I'm a slacker and just don't want to do it. I am hoping that we will know when he is ready for that, once we have seen a little progress on the medical side. That's all I've got, out here in the medical wilderness.

Supplements to consider include NAC and inositol, though NAC would take weeks to help (would be worth it if it worked, but it doesn't work for everyone, obviously, or we wouldn't be here). When we tried inositol and got up to a significant dose, it made my kid feel fuzzy, i.e. brain fog, though I'm not sure what would happen now that his attention is better thanks to ivig. Have you tried anti-inflammatories? Adding, I vaguely recall that NAC might not be good with a yeast problem, though I've seen opinions going both ways on that.

I've never seen a herx from xylitol nasal spray, though we used the brand Xclear, and my pandas kiddo didn't use it often enough to be able to tell. My observation would be that you're using more than one thing to get at the sinus infection so it may be hard to tell. FWIW, if this is a herx, I'd wonder more about GSE than I would about xylitol, and I'd wonder more about the antibiotic than I would about GSE.

Just putting this out here in case anyone has any experience or thoughts. I have always felt a little weird about our lyme results, that perhaps they mean something but not necessarily lyme. Ds had positive lyme IgM from Igenex (only one band for IgG, 41) but negative Labcorp twice, including the full IgG WB, though full Labcorp IgG WB was months after we had done several months of combo antibiotics and herbals for lyme and coinfections. We never saw a hint of improvement in OCD on combo antibiotics. (Also had elevated strep and myco titers for a long time.) We are currently doing IVIg and crossing our fingers. Lots of other infections were tested for in the traditional way (individual tests from labcorp). Poking around, I am finding the possibility that the WB might detect things other than lyme, e.g. this discussion http://www.lymeneteurope.org/forum/viewtopic.php?f=5&t=1686&p=16959 Just wondered if anyone's explored other infections that might have been indicated by the WB. On my ds's Igenex, 18 kda was the most positive IgM, ++. The linked discussion above points to the possibility of c. pneumonia though I don't know much about it. hmmm... I found this so far about various chlamydia species:

FWIW, Florastor is what I'd suggest for c-diff but I have a huge caveat. Saccharomyces boulardii (what is in Florastor) is a major, major, major problem for my ds. In fact, it immediately preceded the onset of OCD (he also had undiagnosed strep, myco, lyme, an immune deficiency, and a long history of gut issues). If I give him more, he gets an obvious increase in OCD within hours. Other than stopping the s. boulardii, I have not figured out how to undo it. Probiotics have not been helpful. I feel like there's a huge missing key in the gut for us. Adding, recently I've begun worrying that the s. boulardii took advantage of a bad situation - immune deficiency and leaky gut - and created some type of systemic fungal problem. There are reports of this happening and it's not terribly easy to fix without prescription antifungals. I'm just a parent but I'd disagree with your ND - why can't the gut dysbiosis be part of PANDAS? It's just a term for messed up microbes in the gut. Strep can live in the gut as well as other germs. The Cunningham panel is another issue, though perhaps you're right that the augmentin could have affected the result. My understanding is that it's best to test when there are major PANDAS symptoms. I'd do a thorough search of this forum for West Coast specialists and possibly start a new thread asking so that you might get private messages with names. I don't know about Oregon but I'm sure I've seen discussion of Bay Area possibilities. It's too bad that the Stanford clinic is so limited.

If your child has an immune deficiency, that is the first angle to try for coverage. I'm not aware of any insurance covering for PANDAS specifically, though some might get coverage for encephalitis. Check your policy language - if you can fit your child into a category in the policy, give it a try, though I recently read that insurance always pushes back; expect to appeal. We did not get coverage, though I recently read that it might be easier to get it through the prescription coverage service rather than through the regular medical coverage. Keep eyes and ears open for clinical trials. I don't think there are any current PANDAS studies with IVIg though there might be another one in the future. See https://clinicaltrials.gov to search for studies currently recruiting participants. Here is a link to a search I made https://clinicaltrials.gov/ct2/results?term=ivig&recr=Recruiting&type=&rslt=&age_v=&age=0&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&rcv_s=&rcv_e=&lup_s=&lup_e= Interestingly, there is a trial for children with encephalitis but it looks like it's in the UK only. If your child has an immune deficiency and is prescribed low-dose IVIg, there is a trial of a new IVIg product. Also the price may be different depending on where you are getting it. Our clinic has a slightly cheaper price for out-of-pocket patients, 70-something per gram (vs 90-something per gram), times how many grams + a couple hundred for the nursing fees. How many grams is based on dose (0.5 or 1 or 1.5 or 2 g/kg) and weight (how many kg does your child weigh?). Don't forget about frequency - if you are looking for a single high dose, that will be cheaper than frequent low dose (except that frequent low dose is much, much more likely to get coverage for an immune deficiency).

http://discovermagazine.com/2010/jun/03-the-insanity-virus (this article is old, from 2010) phase 2 clinical trial http://www.servier.com/content/geneuro-announces-launch-phase-iib-proof-concept-study-gnbac1-multiple-sclerosis-and-servier https://clinicaltrials.gov/ct2/show/NCT02782858 (news article 2015) Really interesting stuff, though I wish science moved a little bit faster!

Anyway, on the immune system health, probably your PANDAS specialist tested for that. Look for the bloodwork for IgG levels, total and subclasses, and IgM/IgE/IgA total. Also look for whether your doc tested for other types of infections. There are many other tests that our immunologist has done on various immune parameters, but I guess IgG levels are probably the first and most crucial to look at initially. For an immune system deficiency, if you have all the required pieces for the diagnosis, insurance may cover low-dose, replacement IVIg. I haven't noticed any posts on this forum where someone got insurance coverage for high, treatment-dose IVIg for PANDAS - it's usually considered investigational. Though, it could be that I just don't remember. (We did not get coverage even for the immune deficiency; insurance can be picky or it can depend on the luck of the insurance person reviewing the records.) What I don't know and might be important to consider is whether there are any autoimmune conditions for which insurance might cover high-dose IVIg - I'd like to know if anyone has any info. On the college, I'd be concerned about starting even community college if he isn't yet set up for success due to his attention and EF issues. If he wants to transfer to a more challenging college later, he would still need great grades from the CC. That's what would have me leaning toward a gap year - or perhaps better, maybe taking only one or two CC courses at a time, just to keep even the barest intellectual stimulation - with the health excuse, until his ADHD issues are really handled in whatever way possible. So sorry about all this. I hate PANDAS.

I did not attend, but I would love to hear about the different IVIg protocols discussed - protocol very important to us right now as I want to do a different protocol from what we're doing. If there is reasoning behind the different approaches, that would be super, super helpful to know.

I guess it makes a little sense, if there's food that's not getting fully cleaned off the expander. I wonder if bacteria stick to the metal itself. FWIW, we had the opposite experience with the palate expander, in that ds seemed happier with the palate expander. In his case, I wonder if it had something to do with the structure of his head and the lymph vessels that connect to the brain behind the mouth someplace. I recently found some dental probiotics that I like that supposedly work against strep, though it's hard to say how effective they are.