jan251

I suggest seeking out a PANS/PANDAS specialist rather than trying to convince other docs. On the vitamin D, take a trial-and-error approach. It can make things worse (it does for my child).

Antibiotic for the sinus rinse - our ENT chose cleocin gel 1%. It comes in a tube. I suppose the gel is a better choice than trying to do it with a capsule. Cleocin is clindamycin, good for strep. (My kiddo has high strep titers, though I suppose there could be something else in his sinuses like mycoplamsa, in which case clindamycin wouldn't do much, I think.)

Skin picking, trichotillomania, is indeed a common type of compulsion/OCD. Even if it's a tic, tics are likewise symptoms of PANS/PANDAS.

With a history of sinus issues, I will second the recommendation to get that looked at. After three yrs of antibiotics and several months of IVIg (and then a T&A), strep titers still high, we finally got around to a sinus CT. The report did not indicate infection really, but the doc showed me on the CT itself where it looked like there may be infection. We will now be attempting to treat that - not sure what the path will look like except that we are starting off with antibiotic in sinus rinse. I'm hopeful this could be the key we have been missing for so long, infection that oral antibiotics couldn't reach. Or it might be another dead end, but I'll chose hope instead. We found IVIg to be helpful for other symptoms (attention and so forth), just not the OCD. I don't regret the IVIg and I can imagine a situation where we may do more once we are confident we have dealt with the sinuses. I wish we had done the CT earlier as I'm having a "well duh" moment, but it really was not obvious. Mild post-nasal drip is his only symptom. Possible infection in the sinuses fits well with the theory that problematic antibodies cross over into the brain via the olfactory bulb.

At the time, our ND made a clinical diagnosis of bartonella, without bloodwork. We made zero progress, but then we've never made any progress on the OCD at any time. Recently, we did blood testing through Immunosciences, which was entirely negative. So, I have nothing useful to report because it seems he doesn't really have bart, notwithstanding controversies over testing accuracy. We only did Bactrim during that 3-month combination protocol with ceftin and biaxin.

My child is compound heterozygous for MTHFR (A1298C and C677T). He was on Bactrim with zero problems, in combination with Biaxin and Ceftin, for about three months. That was a few yrs ago. A rather significant percentage of the population have at least one MTHFR polymorphism (like 40%). I have never heard anything about people with MTHFR polymorphisms not being able to use particular antibiotics and I'd question the source of that info. A more interesting question in my mind would be the polymorphisms related to the liver (e.g. CYP2D6 and the others listed in the genetic genie detox profile). Certain antibiotics like rifampin affect processing in the liver (for rifampin, I think phase 1), and others are just hard on the liver (like diflucan) in which case I'd tweak how the medication was given, such as time of day compared to other meds, add liver support supplements, etc. None of that is to say that anything in particular is contraindicated with certain liver polymorphisms, just that it may be cause to tweak a protocol. (My big exception would be psychiatric medications, one reason we are afraid to go near them, my kiddo's crappy genetics.)

Interesting. If the Th17 is coming from lymphatic tissue, I suppose it's possible, except that the tonsils are not the only lymphatic tissue in the area and the tonsils aren't the only location for strep infections. There is lymphatic tissue in the sinuses as well as many other areas of the body. This might explain why T&A seems helpful for some cases of PANDAS but nowhere near all. Last I remember, the limited data indicated that T&A helps about half. T&A did not help my kiddo, though I do not regret it. I'm glad we eliminated the possibility. He recently had a sinus CT and we have an appt with ENT soon to discuss the results. Plus, it would be unsurprising to me if my kiddo had strep in the gut, where there is lymphatic tissue, though I don't quite understand how it can really hide there from antibiotics, unlike in the tonsils. Also, our doc frequently mentions that strep can be in the urinary system (bladder) as well.

Clavulin is amoxicillan plus clavulanic acid, the same thing as Augmentin (the generic bottle would typically say something like "amox-clav"). As far as I know, it treats both lyme and strep. Treating lyme (and co-infections, which are to be expected) is a huge can of worms. I would see an LLMD.

For what it's worth, I find there is a lot more activity, literally thousands of members, in Facebook groups. I think you'll get a better response by joining some groups.

I would find a PANS doc (via PANDAS Network website) or an LLMD (I don't know how to find one in your area other than going to ILADS website and asking for a recommendation). And join a PANS Facebook group and ask there - there are several (I think I"m in about 10 groups LOL... perhaps start this one and this one ). I don't know what immunologists are PANS-friendly on the east coast besides Dr B in CT. But any doc can order the immune system bloodwork.

Be sure to take pictures of the "stretch" marks, as they may be bartonella. Weight loss may be a concern, but at 21, I don't think I'd be expecting more growth. CSA is a mixed tincture of cryptolepis, sida acute and alchornea, a favorite recommendation for various lyme-related co-infections of herbalist Stephen Buhner. (see e.g. http://www.woodlandessence.com/herbal.htm but Buhner's protocol is more complicated than just that mixture) I suggest Buhner"s bart book https://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083/ref=sr_1_1?ie=UTF8&qid=1498414324&sr=8-1&keywords=buhner+bartonella (your library might have it) You would want to start anti-inflammatory herbs like japanese knotweed (aka polygonum cuspidatum), resveratrol before anti-microbial herbs. And probably basics like a little bit of b-vitamins and magnesium. There are some helpful Facebook groups. Has he had immune system bloodwork (with an immunologist or PANS doc) or testing for lyme and co-infections? For the most part, infectious disease docs are not helpful for these issues.

You may find some older discussions if you search the forum for CBD rather than CBN.

It depends on what you mean by geneticist. Long before pandas, we saw genetics at our local Children's hospital, not once but twice over the years (the second time after cardiology found a cardiac mutation). 6 month wait for the appt. Walked away with nothing, not even bloodwork, because they couldn't put together any of his eight thousand weird medical oddities. A regular geneticist will look for symptoms of a genetic condition and then do bloodwork looking for related genes. In contrast, private genetics specialists (like Courtagen, I think?) will run the genetics testing, either the exome or something simpler and less complete, and then see what turns up. An easy, cheap way to start out would be to get the 23andme ancestry testing, take the text data file and run it through some free interpretation sites like genetic genie and healthcoach7.

Clearly, you'd want to look for infections. I'd set up an appt with your pandas doc (or whoever; really, any doc who will do it) to run some bloodwork ASAP, both for infections and immune system stuff, IgG levels and so forth. In the meantime, I'd haul the kid off to the nearest urgent care for a swab and throat culture today. It seems to me that this sort of situation is to be expected with PANS/PANDAS.

I have never heard of a weak hypothalamus. However, one of Dr T's theories involves insufficient brain histamine being produced in the posterior hypothalamus (apparently the only place in the brain where it is produced). It has neurotransmitter functions in the brain. (Sorry, I forgot the explanation of how this came to be and what the immune system role would be.)

I have no idea but I'd love to hear about plasma exchange. Did you see any benefit from IVIg only? For the plasma exchange, how many days PEX? Did you follow PEX with IVIg? After starting plasma exchange, how long before you saw improvement in OCD, if that was a symptom? Thank you!

Table and Text Excerpt from: “Treatment of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)” SE Swedo (NIMH), J Frankovich (Stanford), TK Murphy (Univ S Florida) In press, Journal of Child & Adolescent Psychopharmacology https://www.pandasppn.org/wp-content/uploads/2017/05/PANS-Clinical-Care-Standards-for-Use-of-IVIG.pdf

Which part is bugging you, 4Nikki? The part about referral to "several" academic centers for treatment, centers that don't really exist? Or the part about how they use SSRIs *but* they often don't work and bad things can happen? Lots of parts lol. Or is there some bigger issue with the article?

http://www.mdedge.com/clinicalpsychiatrynews/article/131114/pediatrics/antibiotics-have-role-pans-even-no-infection

For what it's worth, IVIg helped my child's attention and executive function even though we are still hunting for a fix for the OCD. He's doing well in school, is very advanced in math and is set to start at a private high school in the fall. We did IVIg infusions every three weeks for several months, though I noticed the attention improvement right away even with low dose. (We paused infusions for tonsillectomy; I'm not sure what we're doing next re: high dose vs low dose, but that's a long story) Each kid is so different. I would think that treating PANS/PANDAS would help - if you haven't lately, perhaps a check of the immune system is in order, e.g. IgG levels and so forth - bloodwork with an immunologist. I'd also want to retest for a bunch of infections, check strep titers, etc. to make sure nothing has been missed, basic PANS/PANDAS stuff. Generally, when I think of executive function stuff, I think of methylation/B-vitamins and of course possible infection/immune system involvement. So many possible factors. I'm still always trying new things. LOL supplement of the week is alpha lipoic acid - we'll see how far we get as I'm unclear on dosing.

A quick search of pubmed turns up these: https://www.ncbi.nlm.nih.gov/pubmed/28358599 https://www.ncbi.nlm.nih.gov/pubmed/15820236

Thanks mmw! That's super helpful! I think we will be doing a round of clindamycin with a pinch of rifampin, but I want to immediately follow it with something else for longer term and it sounds like cryptolepis might fit the bill.

mmw, if you don't mind, what was your dose and frequency for cryptolepis? Thanks!

If it is strep-related, then clearly I'd look at the whole PANDAS can of worms. Other than that, google trich and NAC.

My child had a problem with s. boulardii. I never figured out what the problem was and have never been able to "undo" it. In your case, I would not try to push through. I'd probably go back to the old probiotic for several days, see if you can get back to whatever the baseline was before starting the new probiotics, then try GutPro by itself so that you can tell whether GutPro is an issue.