jan251

Does your ds have an immune deficiency? Have his IgG levels, etc. been measured? In your ds's case, I suppose I'd want to continue to explore all PANS treatment angles, although I know what a black hole that is and unfortunately it takes far too long when your time is extremely short in college app season. I'm so sorry; what a pickle. Maybe a gap year is an option, with the reason focused on a medical situation (I'd feel inclined to avoid mentioning the specific neuropsychiatric effects of the health crisis). What to do will depend on what the long-term goals are, what sort of major/career, what level of college selectivity. Adding: I just noticed the poor GPA and mediocre SAT that may not reflect his actual abilities. While the SAT could be retaken in a better phase of health, the GPA may keep him out of schools he might like to attend, yes? Maybe his plan for meeting his potential will involve attending some random college first and then either transferring or aiming higher for grad school, if grad school would be involved in his career plan. Still, you'd want him in a state of health where he can be successful in his classes, no matter what sort of college. Alternatively, do you have a 504 plan? I'd be in touch with the learning services/special needs offices at the colleges. With time so short, I'd probably feel the need to get rather aggressive with the treatment plan. Are you seeing a PANDAS specialist? Is he on meds for ADHD and/or anxiety?

He could . I sent a private message to the poster with the same referral.

Unfortunately, he does not have experience treating lyme.

Thank you! Do your kids have OCD and/or tics and has there been any change? About how much are you applying to your dd, size and/or ml ? It is this product? With this product, the ingredients are: Ammonium sulfate might give me pause - I wonder how that fits in. According to the patent application, it sounds like the ammonia bonds to the mineral (see p 5).

I always hope something new and different will be posted on this board and I try to keep an open mind. So, thank you for posting Could you describe in a little more detail what your experience has been? For example, first nothing happened for two weeks, then there was a herx which consisted of symptoms x, y and z, then we started to see gradual/abrupt/occasional improvement in symptoms p, q and r over a period of n weeks, etc. I'm particularly interested in change in PANDAS symptoms (and which ones). Thank you! Also, your kids' situation to start with: they had lyme and bart. Did they have anything else? How about IgG levels, immune deficiency, IVIg? Thanks!

FWIW, strep isn't the only type of infection that can cause a problem. (Others include mycoplasma and lyme, but there are more.) See e.g. this article. Also consider the health of the child's immune system (e.g. IgG levels). Good luck with the pediatrician - some are receptive while many are not.

Thanks LLM! I agree with your thoughts about the study and your ideas for further study, especially the part about the status of infections going in and what other treatments the patients were receiving. I imagine it's difficult to design a study where there are so many individual variables. I did a little more reading and found a few older threads that I'd like to collect here for future reference, adding more as I find them. However, they're definitely old, and I'm still interested in learning the more recent thinking on IVIg dose and hearing about more current experiences - perhaps the study above is the most I'll find. I really want to understand the differences of opinion between certain docs on dose and frequency (we need ivig regardless for an immune deficiency). IVIg dosage and how often High Dose IVIG 2gr per kilogram IVIG numer two Repetitive IVIG

I have read many old threads. It seems that this forum isn't as active as it was a few years ago, hopefully because posters were successful in getting treatment for their kids. There have to be people out there in the world who might offer comments on the following from more recent experiences, though perhaps they don't read this forum. I am interested in comments on medium dose (around 1 g/kg) on a more frequent basis (21 days) compared to high dose (1.5 to 2 g/kg) on any frequency basis with regard to OCD symptoms. I'm especially interested in the rationale behind the 8 week regimen at 1.5, where the 8 week timing comes from. (I know where the 21 days comes from.) 1.5 every 8 wks was the protocol used in the study that came out in June, PANDAS: Baseline Immunoglobulin Levels Predict Achievement of Remission at One Year Following IVIg Therapy, but alas, these are not our doctors so I cannot ask. I have a very vague understanding about how low-dose (say, 0.5 g/kg) works for immune deficiency replacement purposes and high-dose (1.5 to 2 g/kg) has been used historically for autoimmune purposes though the mechanism there may be multifactorial and is not well understood. What I don't get is whether the frequent medium-dose (1 g/kg) mechanism is a little bit of both - replacement and autoimmune - or whether it turns out that it may be insufficient for autoimmune purposes, at least for some individuals. For those with experience at 1 g every 21 days or at 1.5 every 8 wks, did you have worse-before-better, turning back the pages, and when exactly? If you saw improvement, when did it begin and can you describe the course (abrupt, gradual etc.)? Did you have an immune deficiency? lyme&co ? If you remember anything about trough levels, was there a particular level when you saw OCD improvement, did improvement occur after a certain period of time above a certain trough level? I'd love to hear any comments anyone has. Feel free to private message if you'd rather not post publicly. Thank you from the bottom of my heart for any thoughts on the dose/frequency comparison; you know how lonely it can get... (not to mention how my head is ready to explode)

I think this is an excellent summary within the bigger picture of AE. Includes interesting discussion of the function of CamKII and the rest of the Cunningham panel. See pp. 54-65. Autoimmune encephalitis History & current knowledge Short compendium Version 5.8, April 2016 By Finn E. Somnier, M.D., D.Sc. (Med.), copyright ® Department of Autoimmunology and Biomarkers, Statens Serum Institut, Copenhagen, Denmark Adding, I see that pandasnetwork.org already has a related article from 2013: http://pandasnetwork.org/wp-content/uploads/2013/07/Dopamine-related_autoimmune_encephalitis.pdf

I can't believe I've never noticed these probiotics before. For example: Now Foods Oralbiotic Blis K12, Dental Biotic Use of Streptococcus salivarius K12 in the prevention of streptococcal and viral pharyngotonsillitis in children Assuming the study was done by the manufacturer of the trademark Bactoblis, I am nonetheless intrigued. Has anyone tried these probiotics for preventing strep and/or for oral health?

On the resveratrol, if I give too much (two capsules and often) then yes, I *think* I see a herx. Usually I'll do just one capsule (ds is 75 lbs). I use the one by Seeking Health so as to avoid the resveratrol from grapes that is often contained in the regular brands (gives me a headache). On lyme forums, there do seem to be people who herx from resveratrol. But, rowingmom's child here on this forum did well with resveratrol, if I recall. Pycnogenol is good and there are studies on attention and test anxiety. Intuitively, I don't use this one at night. Same for the blueberry one. Mino produces a definite herx in my ds - or exacerbation of symptoms, more OCD and dilated pupils - so I don't know what to think about that. Unfortunately we just can't use it right now. I'd really really like to though *sigh*. As tj21 mentioned, detox is another important angle to consider - I like milk thistle (I think it has sulfur), Broccomax (surely sulfurophane is sulfur? don't know) and NAC (obviously sulfur), all for liver.

Ideas to look into: resveratrol (japanese knotweed/polygonum cuspidatum) pterostilbene (comes from blueberries, supposedly more brain access than resveratrol) I don't know whether either of the above have sulfur. If you're a Buhner reader, there may also be some lyme&co herbs that are anti-inflammatory; I'm thinking of isatis. Also certain antibiotics, as often discussed here (e.g. minocycline). Adding: how could I forget pycnogenol!

Thinking out loud, I'd probably want to get the Igenex results back first and also consider types of infection might be hiding out in the sinuses. Maybe the doc wants the tonsillectomy in case infections in the tonsils can cause sinus infections? (I have no idea. I'd feel reluctant on that too.) Ceftin might address strep, lyme and bart. If the immune system is not functioning well, then perhaps it makes sense to do the IVIg in addition to treating for infections, though I'd wait on the lyme results. Has mycoplasma been tested? Is he already gluten free?

IgG levels would just be blood tests that indicate the health of the immune system (IgG total, IgG subclasses 1-4, and IgM/IgE/IgA). They were probably done at some point as they're relevant to any discussion of a need for IVIg, but maybe it's time for them to be done again. Check the past bloodwork for any immune system parameters. You might also take another look at your supplement list and think about whether he may be reacting to any of them. Fish oil seems to be a not uncommon problem for tics, zinc doesn't sit well with everyone, and probiotics can be a really peculiar thing (for example, my ds reacts with OCD to saccharomyces boulardii).

Perhaps consider (1) supplements to improve the processing in the liver (e.g. NAC, milk thistle, Broccomax) for a possible herx, and also (2) anti-inflammatories ? Good luck!

I would put it another way: anxiety and OCD are among the symptoms of PANDAS. The question, then, is whether PANDAS is causing the anxiety and OCD or whether they are ordinary anxiety and OCD where no one bothers to look for a cause. I'd be looking for something stronger than plain amoxicillan, such as augmentin or azithromycin. Good luck with the PANDAS doc.

Another study on minocycline and OCD: Minocycline combination therapy with fluvoxamine in moderate to severe obsessive-compulsive disorder: A placebo-controlled, double-blind, randomized trial. I wonder what happens after the mino is withdrawn? More mino studies: Minocycline attenuates interferon-α-induced impairments in rat fear extinction. Autism phenotypes in ZnT3 null mice: Involvement of zinc dyshomeostasis, MMP-9 activation and BDNF upregulation. On the other hand: Microglia Activation and Schizophrenia: Lessons From the Effects of Minocycline on Postnatal Neurogenesis, Neuronal Survival and Synaptic Pruning. And orthodontics can induce glial activation? who knew? Effect of minocycline on induced glial activation by experimental tooth movement. (Interestingly, it appears Dr. Swedo also did a study: A pilot open-label trial of minocycline in patients with autism and regressive features, where there were changes in CSF but not in symptoms) There is a minocycline study underway, Novel Medication Strategies Targeting Brain Mechanisms in Pediatric OCD, though no results have been posted. This trial requires current SSRIs with minimal but insufficient improvement. PANDAS patients are excluded.

Just FYI, this is an article about acute flaccid myelitis (AFM) and its association with EV-D68 that caused trouble a couple of years ago. A mysterious polio-like illness that paralyzes people may be surging this year, Washington Post Cases of rare polio-like illness up sharply in 2016, UPI Interestingly, they are talking about possible treatment with IVIg. Past discussions in this forum: Feeling bad for those parents in California. paralysis: entero-virus, lyme, other, both, all?

Were infections ruled out and/or treated prior to IVIg? Specifically, lyme (& co-infections), mycoplasma (and of course strep)? I've been reading and reading the anecdotes on this forum. From those anecdotes, it sounds like there can be some sort of infection(s) lurking where the IVIg helps improve the immune response such that there can be a herx as the infection is finally being killed off....? Would love to hear more experiences. I might suspect possible infections that medicine isn't even aware of yet. Dave do you have any headaches/nausea too, or are you referring to neuropsychiatric symptoms (OCD, etc)?

Completely random thought regarding the sound sensitivity: my ds has sound sensitivity and red ears along with OCD. I noticed it was a little worse following a recent sickness (we are in the middle of IVIg/zith) and I noticed the sound sensitivity was helped a tad by detox for the liver (broccomax in the am, NAC in the pm). My theory is that some sort of infection or herx from infection cause his sound sensitivity symptoms.

Interesting. I was under the impression that such symptoms were specific to PANS/PANDAS although the connection is not understood. However, a quick google shows that various bladder issues are not uncommon in the world of lyme and co-infections. The question becomes whether there's an actual infection in the bladder (by lyme or co-infections or something leftover after treatment for the lyme, like e-coli) or whether the connection is altogether different, e.g. nervous system (neurogenic bladder). FWIW, my ds had bedwetting issues that we managed for years with magnesium citrate. D-mannose also helped. A few months of antibiotics for lyme and co-infections seem to have kicked it to the curb. We still have other symptoms, such as plenty of OCD, but not the bedwetting/voiding dysfunction/urinary urgency stuff.

Whether to do IVIg is such an individual decision. For us, the only angle I've worried about is lingering infection (especially lyme&co), which is the only scenario I am aware of for IVIg making things worse. Fortunately, we are not seeing anything worse at this point with IVIg in spite of known infections (including lyme, which had been treated beforehand to no apparent avail), though we have ramped up IVig dose quite slowly. No side effects for ds. I have no plan to take our ds out of school as he's actually doing better with school at this point, with better organization. He had another infusion yesterday and might come with us to a party this afternoon (I'm sure his OCD will be on full display, but that's another story). I see the concerns over the high school transcript. With our ds in 8th, this is our last year before everything counts and I so hope we can get to a better place before high school starts; the clock is always ticking. Speaking of clocks, is AE a possible direction to explore? I wonder. I recently discovered that there is a doc (or two) at our local research university who is supposedly interested in AE. Aside from reading Brain on Fire, I don't know much about it or what the usual treatments might be, as if there's such a thing as "usual." I keep going back to the big picture, infection and/or inflammation driving anxiety. My goal I guess is to address those and then add in whatever supplements or meds might take the edge off in the meantime. For another one of my kids who is sort of pandas-ish lately - meaning increasing anxiety and a little tiny bit of ocd, that I wouldn't even notice if it weren't for his brother - I added a few supplements, a little bit of B6 and methionine in the morning, Walsh-like, and a tiny pinch of ashwaghanda in the evening for sleep and general anxiety - I haven't tried to give it to him in the day yet. These things seem to take the edge off. Zinc seems to set my pandas kid off though I don't know why as he ought to need it.

I can't answer your question, unfortunately. I would wonder if it's Working Memory (as measured on, say, the WISC) that's impacted or some other form of memory or something else entirely. We are doing IVIg and have seen some improvement in organization/attention. But, we haven't gotten out of our initial flare yet so I can't really compare to your experience. The other day, I read an article in which Dr. Swedo indicated that PANDAS is a type of autoimmune encephalitis and I was surprised to see that put so bluntly. I wonder when the small world of autoimmune encephalitis docs and the world of PANDAS docs will...meet? (As another aside, just from reading anecdotes, it seems as though a higher-than-expected proportion of PANS/PANDAS kids are especially bright and/or 2e, prior to onset. Has anyone else noticed that?)

You would have to ask your doc about the CamKII and the odds of IVIg working. I think our doc took it as just another bit of info that yes, this is PANDAS/PANS, but like you said, nothing has been published specifically connecting CamKII and IVIg as far as I know. I am listening in here to see if anyone has heard anything on this. Unless you have unusual insurance, I think you need to let go of the idea that insurance will pay for IVIg for PANDAS and therefore that a high CamKII would be relevant to insurance. I can't imagine there would be any need to repeat the Cunningham Panel at this point in time. The only change you have would be response to steroids and the whole reason you'd even be considering IVIg is that there's a need for further treatment, yes?

FWIW, I think you need to add an immunologist (some allergists are immunologists but I"m not sure if they all are) to your list of docs to see, especially if you can find an outside-the-box one who will understand PANS/PANDAS. There are definitely a few PANS/PANDAS docs who are immunologists. Immunologists regularly run allergy panels and you'd also want immune system bloodwork anyway. Adding, I'm not so sure about a regular, inside-the-box allergist such as at a children's hospital is likely to be quite as helpful for the big picture, though I suppose they'd at least run some allergy testing. For that matter, whoever you see for lyme soon can presumably order bloodwork for allergy testing as well, though it seems to me that the immune system stuff gets complex pretty quickly and it can be useful to have the expertise of a good immunologist looking at your dd's case.