jan251

Very interesting! A few months ago I came across an article about the neurosurgeon who pioneered work with the vagus nerve. http://bcm.bc.edu/issues/winter_2016/features/the-generator.html http://www.feinsteininstitute.org/our-researchers/kevin-j-tracey-md/

We really didn't need yet another issue... feeling a bit beat down by everything in spite of the fact that sure, perhaps this is an angle we might find helpful to address. So far just poking around here, possible causes could be things like pyroluria, gluten issues, something about zinc... any one of which might make sense. If you have a child with slow growth issues, please pipe in about what the problem was, how you addressed it and whether that had any impact on the PANS/PANDAS symptoms (and specifically any impact on OCD). Thanks! Adding: anyone experience slow growth due to an immune deficiency and did IVIg "fix" it?

I just want to tack on a really interesting study I came across about minocycline. Developmental minocycline treatment reverses the effects of neonatal immune activation on anxiety- and depression-like behaviors, hippocampal inflammation, and HPA axis activity in adult mice. What is so interesting to me is not so much that neonatal inflammation had long-lasting effects (this fits with my general perspective and personal experience with my ds, who had his share of issues as a neonate) but especially that the minocycline during adolescence improved the problem. (Unfortunately, we tried mino a few times before and ended up stopping after a short time due to increased sound sensitivity, which is already a major issue for my ds. At this point, I'm suspecting that may be a herx, and while I'm not big on pushing through negative symptoms, I wonder how long we could manage to get through, maybe with the addition of NAC.)

Honestly, I have a sneaking suspicion that widespread folic acid in the food supply is one significant factor (among many) for the rise in various types of neuropsychiatric difficulties.

I hadn't seen that one before. From the article: Here's the study: http://www.nature.com/pr/journal/v77/n6/full/pr201551a.html L. rhamnosus GG is Culturelle. (I haven't looked at it in a while, but I have a vague recollection that some versions of Culturelle include a prebiotic, FOS, that might not agree with all people.)

Gpookie, if you don't mind my asking, did your kids improve on antibiotics before you did the IVIg? Can you comment on what symptoms looked like when you started IVIg and what the schedule of improvement was? We have not really seen improvement on antibiotics (lots, for strep/myco/lyme etc over a long time) and we are about to embark on IVIg (still waiting to hear about coverage - if we get coverage for the subclass deficiency, we will do LD monthly; if we pay out of pocket we will probably do HD monthly but I'm not sure). I'm thinking about whether we may need to add substantial antibiotics again, during/after the IVIg, and how we will even know - I suppose I can ask to have strep and myco titers checked yet again when we are drawing for other things. Then there's the lyme question, sigh (labcorp negative, igenex positive).

Random thoughts: Antibiotics as a baby - yes, our immunologist thinks that negatively affects the immune system at a critical period of development (but at the time, they made sense - not sure whether we necessarily could have chosen differently due to the medical issues). I haven't looked closely at a probiotic enema but I'd do that in a heartbeat. Trouble is, I don't think my 13 y.o. would, if you know what I mean. FWIW, I read elsewhere that it may be possible to insert probiotic capsules into the rectum, though I'd guess there might be an issue with not getting as far in as an enema would. On the article - interesting. One thing I noted in the Finn vs Russian comparison is that the Finns ate more processed food. What might bug me most about processed food is that so much of processed grain products contain folic acid. It would be interesting to know how many of the Finns have genetic polymorphisms affecting methylation and liver clearance (not just MTHFR). My understanding is that these may affect the immune system just as much as germs, i.e. ultimately the micro biome is going to be affected in some way. (as a total aside, when we look at rising rates of adhd, asd, etc., I wonder if the folic acid issue has ever been tracked over time... it is very hard to buy processed grain products that don't contain folic acid, especially for bread/cereal/pasta, even flour, except for some organic brands) ETA, I'd wonder about differences in vaccine schedules between the comparison groups.

Just tacking on, what if the D2 titer is borderline low? If anyone wants to help me think through this, if the dopamine receptors are getting attacked by antibodies at a lower-than-normal rate, could that mean there are more available dopamine receptors, i.e. the brain is more sensitive to available dopamine? Or do I have something mixed up?

This is encouraging. If you don't mind saying, which BCBS is this? Our BCBS is IL (which is not the state we live in but whatever). We are awaiting a decision on coverage for LD for a subclass deficiency and we don't want to do the pneumovax challenge (had prevnar as a baby, recent testing shows no response).

What are the behaviors if they are not neuropsychiatric in nature? What are his symptoms? By "all the tests" do you mean for infections like strep? what about lyme co-infections? have you done a Cunningham panel? What bands were positive on Igenex?

Quoting a very old post by Buster from here I just wondered if anyone else had this situation, high CamKII and low anti-lysoganglioside. We did the panel over a year ago. I just noticed that my ds's anti-lysoganglioside is borderline low and I wondered what, if anything, it might mean (his CamKII was 167).

We are gearing up for IVIg after seeing no relief from any combination of other treatments (herbal and pharmaceutical antibiotics for strep, lyme, myco). I was surprised to learn that our clinic does not do IVIg at all in the same way that I read about it on this forum or in any of the few studies. At this clinic, IVIg is by no means one and done. Dose is a separate question, but this clinic prefers to slowly ramp up IVIg and give it roughly monthly (or slightly sooner than that) in order to not have falling IGG levels.... or at least that's my rough understanding. Our only question now is dose - we will go with lower dose if we can get insurance coverage for an immune deficiency or we will pay out of pocket for a higher dose. Unfortunately, this process is taking forever - I really want to get on with it.

PANDAS is included. The cytokine profile of OCD: pathophysiological insights https://www.dovepress.com/the-cytokine-profile-of-ocd-pathophysiological-insights-peer-reviewed-fulltext-article-IJICMR#

FWIW, there are a couple things that seem to help in our house, that may be worth a try just for the urinary issue alone: magnesium citrate and D-mannose. However, I do not know what the mechanism would be for either one. Years ago, I thought the mag citrate merely relieved constipation (our primary reason for using this), but there is something more to it than that, because it helped even when there was no constipation present. I would think that the D-mannose should only help if there is some sort of e-coli in the bladder, but ds had never tested positive for a UTI. Perhaps there is either some other germ that D-mannose affects or perhaps there is e-coli present at undetectable levels. (D-mannose can be purchased as a sweet powder or in capsules.) In the long run, antibiotics have helped with the urinary issue even though we have never seen a dent in the OCD. Once in a rare while, the urinary issue comes back, though I try to be disciplined with the magnesium.

I have no answers. In almost 2 years, my child has had absolutely zero improvement on a variety of lengthy antibiotic and herbal protocols for lyme/bart/bab as well as methylation protocols of varying types. He is positive for lyme through Igenex but negative (including WB, all negative bands) through Labcorp twice. He has had positive tests for myco and strep. He has an immune deficiency that has not yet been treated and that is our next step (IVIg, probably). What I worry is that he will need yet more, lengthy antibiotics after/during treatment for the immune deficiency, in other words, it may be that we need to treat the infections, the immune deficiency, and the methylation defects *all at once*, though it still seems odd to me that we really haven't seen any improvement at all on significant antibiotic protocols. (If anyone has thoughts on this, feel free to share ) If you don't mind me piggybacking here, I have a lyme-related question about steroids. I understand that steroids are contraindicated in cases of lyme. Before we had our lyme results, we did a couple of 5-day rounds of steroids, to no avail. I have heard (separate from the lyme discussion) about trying a 30-day steroid course to "re-set" the immune system and I wonder if anyone with lyme has done that and what happened.

My ds gets red eyes. I have long assumed that it is from some germ, like bartonella (which we have suspected, as he has lyme) or possibly toxoplasmosis (random idea) or who knows what. (Incidentally, he is not on antibiotics right now and I haven't noticed the red eyes since we stopped. I am currently working on a methylation angle that might also lower histamine. He definitely has gut issues at the core of the PANS problem.)

I'd love to hear the rest of this patient's story!

sf mom, could you comment on what anti-parasite therapies worked the best for your family? As in, what would be your top choice if you had to pick one? I have a PANS kid with lyme&co/myco/strep with known immune deficiencies as well as methylation issues (mthfr, etc.) who has never responded to any antibiotics (lengthy, many many types) with any significant OCD reduction and so now we're waiting to add IVIg. However, he is always worse around the full moon - we are still recovering from last weekend! Typically he'll have dilated pupils though I'll already know it's a full moon by the increased level of OCD. It can be confusing that he often gets sick (like a fresh cold) around the same time, so his exacerbations might just be from that. I have long had parasites in the back of my mind.

This is interesting to me. My ds has a low Vit D but a high Calcitriol and also the VDR taq mutation (homozygous). Supplementing vitamin D never seemed to help, though he has so many things going on, it's difficult to near impossible to tease it all apart.

Nancy, how do you give it - what time of day, how much, every day?

Our BCBS website explicitly says they will not cover IVIg for PANDAS. (They will, however, cover PEX for PANDAS.) Have you looked at whether there are diagnostic markers for an immune deficiency? Those are laid out on the BCBS website that I looked at. That is the angle that our immunologist is working on. I don't know how different Anthem is from BCBS.

Thanks - I had forgotten about that. We did the Great Plains peptide test over a year ago; the ratio for casomorphin was negative (0.51, reference range <0.56, so I wonder whether that result could be considered near the top of the normal range; the wheat ratio was much lower at 0.09, reference <0.58). I'll see if I can find out any more info, maybe on the absolute amount of peptide rather than the ratio... I'm still wondering about lactose, apart from casein, though - can lactose cause such a problem?

Does anyone know what lactose intolerance might have to do with OCD symptoms (PANS/PANDAS) or would they not be related? I have long noticed an association between dairy and slightly worse symptoms. So, I keep him off dairy. However, testing for IgE allergy and IgG response to milk and cheese was all negative. Of course, the IgG testing is not particularly reliable, so I assumed that the result was simply wrong. Today, 23andme released a new report option. It doesn't provide a ton of info, but one item is lactose intolerance, and ds is likely to be lactose intolerant according to this (stop producing lactase at some point). It seems to me it would be easier to buy lactose-free products than dairy-free, if indeed lactose were the problem. I suppose I should just try and see what happens, but, well you know, who wants to take a chance at making things worse, even for a few days. Has anyone eliminated lactose but not casein to good effect? (This is a small thing, but it would be nice if I could get something right for once.)

I don't think anyone knows for sure, though different docs have different theories. In this case, I might consider the possibility of immune system disfunction such that he may not often show sick symptoms because his immune system does not mount a proper response. Have you done any testing of immune parameters? How about the Cunningham panel? An additional question may be: which came first, the infection which in turn depresses the immune system, or the immune problem allowing infection? There are differences of opinion on whether PANDAS is simply due to infection that needs to be treated - which appears to be the case for some kids who recover quickly on antibiotics - or much more complex immune disfunction, which seems to be the case for other kids, perhaps especially those with more issues going on. It seems to me that both can be true. Fitting into little boxes of PANDAS vs OCD vs ASD, etc. may indicate something but not necessarily much; one of our docs believes issues such as ASD arise from inflammation as well as PANDAS. FWIW, my ds has a long history of sensory issues, developmental delay, etc. though the OCD was sudden in onset. Looking back, we see a likely immune deficiency since birth (long story).

For what it's worth, in my area, the infectious disease docs don't believe PANDAS is real and the most notable one has stated that publicly. It seems to me that immunology may be a better specialty to see than infectious disease. As always, choose your providers carefully.