jan251

Is this available only through a study, or do you have a prescription?

Improvement of psychiatric symptoms in youth following resolution of sinusitis. https://www.ncbi.nlm.nih.gov/pubmed/28012531

With your brief description of his prior IVIg -- reacting right there in the hospital -- I would be careful with infusion rate and possibly pre-medicate (many people do ibuprofen and antihistamines). If you are paying out of pocket, price out your options ahead of time. Hospital infusions tend to be the most expensive, sometimes double or often triple the price of other options. As you are aware, home infusions tend to be the least, though if you feel more comfortable in a clinical setting (understandable with his prior infusion), there are infusion clinics all over the place these days, your basic clinic with rooms, nursing desk just like at the hospital, a doc in the building, etc. They just need a doctor's order. Our infusion clinic has an out of pocket price list. Yesterday I paid $83 per gram for 100g Gamunex C and about $500 nursing fees for two days of infusion (though my kid is pretty fast after so many monthly infusions, only about 3 hrs infusion time for 50 g/day x2) $8800 total for 115 lb kid. It is possible to call infusion clinics to ask about their out of pocket prices.

If you haven't done recent bloodwork, I'd do that first (a full immune system workup and infections). I would get another opinion if possible. I don't have advice, except that there's a lot more discussion activity in the FB groups, including one for ivig. I haven't seen a poll, though the Dr K one-and-done approach seems not necessarily as common as multiple infusions or even monthly (often high dose) these days; lots of different possible approaches. The two-year window, it's hard to guess what he bases that on. If you are planning a single high dose infusion, this summer sounds like a good time. If you saw a lot of side effects during/immediately after IVIg, with some pre-planning those may be easier to manage than your prior experience.

I don't see any new Swedo study. There was one a few years ago that was controversial due to the study design and everyone was irritated because it clouded the issue. See these older discussions:

The Cunningham results (high anti-tubulin) confirmed our inclination to continue with HD IVIg in the hope of treating autoimmunity, "resetting" the immune system. Apparently anti-tubulin is associated with demyelination. However, that result was three years into PANDAS. The first result was only high CamKII. My understanding is that this is a common change over time, CamKII falls (it fell a bit from the high result when we ran the Cunningham 6 months into PANDAS, but not all the way back to normal) as some of the others in the panel increase.

Nope

Sinus surgery was easier than the tonsil surgery (my son is 14 y.o.). Tonsil surgery went ok, just that the recovery can be a bit painful in the first 7-10 days. The rhinologist was annoyed that the ENT who did the tonsillectomy had not looked at the sinuses (our immunologist ordered sinus CT a few months after the tonsillectomy and then sent us to the rhinologist). Rhinologist said sinus and tonsils should have been done at the same time.

My son had lingering infection (doc found pus in the sinuses that did not show up on the CT). But, he did not have official chronic sinusitis, just post-nasal drip. It's hard to say whether that has resolved. Full recovery is said to be 4-6 weeks, but it was really the first week or so that was the most stuffy (swollen inside from the surgery).

We did the sinus surgery in Sept. He needed to be fixed in there anyway. We saw a rhinologist, a sub-specialist of ENT, who used the most modern computer-guided techniques, no splints, no packing, back at school 4 days later. He was stuffy for a few weeks (which was not unusual compared to how he was before that, so he didn't complain much). The first week was the hardest. The culture of infected areas in the ethmoid and maxillary sinuses didn't yield anything, unfortunately. No improvement in OCD, but I have no regrets. His dad could use the same surgery Three months later, his ASO was down into the 200s, the lowest it's been since our PANDAS adventure began >3 yrs ago. (Had tonsils out last spring.)

Vitamin D supplementation is controversial. It is theorized that supplementation further depletes magnesium in order to process it. If you try it, please report back!!!!

Zith and mino are known to be ototoxic (can increase hearing sensitivity issues). Have they helped the other pans symptoms? Maybe try an increase in NAC? A separate issue, but D3 makes my panda worse, so we don't use that.

Daptomycin, mentioned in that second link, is an IV abx. Dapsone is the oral version. My understanding is that Horowitz has been treating lyme patients with oral Dapsone for a couple of years, in combination with high dose folic acid (the study says folic acid was used for the purpose of mitigating the small risk of potentially very dangerous side effects of Dapsone, but on his FB page he says it was, indeed, methylfolate, i.e. natural folate rather than synthetic folic acid). He has a paper on it. https://www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.php?aid=7159 From the anecdotes I've read, like anything else, it helps some and not others. Personally, I'm very interested in the anti-inflammatory and immune modulatory effects of Dapsone in addition to its antibiotic qualities. For a lyme angle, there is an interesting discussion here http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/136190

Can you do the whole thing privately, do the T&A and sinus surgery in one operation? That would seem to make the most sense, at least with what little I know. I suppose you might have to pay privately for the whole thing and I have no clue how the system works there, but it may be worth asking the ENT if she could bill separately for the T&A and then bill NHS for the sinus part. Obviously you'd need a sinus CT first, and I have no idea how long that takes to schedule in the UK (here, it can be scheduled very quickly; I think we did ours the next day).

The question of whether to do the T&A in the presence of a sinus infection is a question for the ENT performing the T&A. The more important question is whether you can do both the T&A and sinus surgeries together, as that would be preferred, as I understand it. My kiddo had a T&A last spring and is now scheduled for sinus surgery with a new ENT. The new doc is surprised and annoyed that the old ENT did not scan the sinuses before doing the T&A, because it should have been done in one surgery . New doc felt he could tell just by looking at him that he was stuffed. However, he is not infected, just has abnormal tissue in the nose blocking drainage (fix deviated septum, turbinoidectomy, ethmoidectomy). I was surprised that he was surprised that this wasn't handled earlier.

I would think that timed with a cold, that is more likely to be symptoms of a flare from the cold than symptoms of turning back of the pages from IVIg. But of course, we can only guess. I would also think about getting checked for strep.

Dr. Rosario Trifiletti in Ramsey, NJ is nationally known.

Do you happen to have any info about the mutation, such as a gene name or rs number? Thanks! (we are now at the treating sinus/considering PEX stage of this mystery)

I would consider adding saccharomyces boulardii. S. boulardii is a yeast that is known to help with c. diff and diarrhea generally. My kiddo did not do well on s. boulardii the few times I have given it to him (increases his OCD), but it can fix diarrhea quickly. I'd try it as a one-time dose and then see what happens. Florastor is a brand of s. boulardii. Jarrow also sells a less-expensive one that we have used.

You are in the UK? There is a FB group https://www.facebook.com/groups/199211800204411/

Sinuses - I don't know if this will help, but... my child has had high strep titers for three years. In trying to get at the source of the infection, we are now looking at sinuses. He only has mild post-nasal drip, nothing obvious, but our (pandas-friendly) ENT noted areas of possible infection on a sinus CT. (Sinus CT was ordered by our immunologist.) We are doing Sinus Rinse with antibiotic gel, but there may be more over-the-counter approaches to try. I don't know whether we will end up doing sinus surgery or not - too soon to tell. Bottom line is that if you have sinus issues, I would get on that right away. One of the theories of the mechanism of PANDAS is that troublesome antibodies cross over into the brain via the olfactory bulb. Improvement of psychiatric symptoms in youth following resolution of sinusitis http://www.ijporlonline.com/article/S0165-5876(16)30380-9/fulltext Sinus problems are not uncommon - I would try to find a really good sinus specialist (typically an ENT). That doesn't have to involve explaining the whole PANS/PANDAS thing. Besides Sinus Rinse and over the counter sinus approaches, you can also swab your own throat for strep - swabs available on Amazon (then if positive, take yourself to a doc or urgent care). For an immunology workup, you'd need to see a doc.

For what it's worth, my kiddo does not have any tics as far as I can tell; OCD is his main problem. That doesn't seem uncommon at all among the PANS/PANDAS families on Facebook though I have not seen stats on that. He is very strong in math though he struggled to pay attention for a year or two after onset. IVIg helped immensely with attention and executive function and he's back on track academically, still advanced in spite of the lost time, and in spite of the continual OCD. (Anecdotally, there seem to be a lot of gifted and twice-exceptional kids with pandas.) How old are you, Hitman? There are a number of Facebook groups for PANS/PANDAS, several for "plain" PANDAS, PANS with Lyme, treating with herbals, local groups for particular areas/states (these are great for finding doctors), and on and on. I think I'm in about 9 groups, LOL. Most are parent groups though there may be a few groups for teens and I may have seen one mentioned for adult pandas. The Facebook groups are far more active than this forum!!

No. A person could have OCD instead of, or in addition to, tics. I'm not knowledgable about tic movements. What you are describing with the staring spell sounds more like a seizure??

We haven't yet. We did 11 infusions of IVIg before the T&A (backwards, but the data on T&A was mixed and my child has an immune deficiency, so IVIg made sense at the time). Strep titers are still high after T&A, so we are trying to track down the source of that.

My *very rough* understanding (which might not be correct) is that sinus infection is basically mucus/gunk that doesn't show in MRI. On the CT, there were areas the ENT pointed out to us within the sinus cavities that she believed to be infection even though the CT report from the radiologist didn't mention it. I have little to zero understanding of sinus cysts... I agree about the T&A. We just did that a few months ago! But we are seeing a different ENT for this. On the other hand, maybe sinus surgery with T&A would have been too much at once.