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Flare, High IgE, - What to do?

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Hello everyone,

We are struggling with a flare since a month. DS has a congested nose which coincided perfectly with a flare in his tics. This is not the first time we have seen this pattern. Blood tests confirm very high IgE levels (despite IVIG). Has anyone experienced this before? Any tips?

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High IgE levels come from allergies (or parasites), but if he has a congested nose, it sets him up for a bacterial infection. The first thing I'd suggest is to use a mucolytic (like Mucinex), saline sinus irrigations (neti pot or Neil Med nasal squirt bottle -- not as bad as it sounds). And/or a nasal steroid to reduce the inflammation (like Nasonex, which is now over the counter). The steroids are absorbed very very little, need a few days to show an effect, but they and the irrigations are the main medical prevention for sinus infections.


(Speaking of which, I need to get my DS on the topical steroids again! With the BEG spray we've stopped, for ideally you're supposed to wait for an hour after the BEG... and then I forget)


If you suspect there's already an infection, due to the PANS flare, you can do a nasal culture. Either a regular one, by any internist or ENT (with like a speculum to hold the nostril open so you don't just get surface contamination), or an endoscopic culture by an ENT, in which they numb the nose, put in a thin rigid rod with a fiberoptic light and suction tip, and then they can suction up and culture any mucus. Or a test for MarCoNS, as we've discussed in another post.


My kids and I used to get that the endoscopic sinus cultures with many sinus infections, since they had chronic sinusitis, and the sinus specialist ENT we go to likes to know what he's treating and what it's sensitive to, i.e., to do culture-guided antibiotics rather than "empirical" trial-and-error. It's the gold standard culture, and it can visually show where there's an infection, and/or whether the membranes look pale and allergic. The trouble is that it's more expensive, of course. But if you have this association with a flare, and you have insurance, it's certainly worth doing with a couple of flares, and see if you find something worth treating.


But, if there are high IgEs, I suspect allergies set up the congestion that leads to an infection. In the future, ideally you'd try to prevent a flare by regular use of the topical steroid nose sprays. They are the treatment of choice against nasal allergies. Really make a big difference -- it's just that people forget, and /or you have to find one that your kid doesn't mind (too much) taking. Cause the key thing is to take them.

Edited by wisdom_seeker
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