Allergies and IVIG

[reactive]

Hello all.

I really look to this forum for information; a lot of what we have been able to do to help our DS 14 we learned here.

So here goes...our newest dilemma...anyone else in our shoes?

 

DS 14 has had PANDAS/PANS since aged 4. Currently battling severe flare since March 2014. Had IVIG August 2014. On 500mg Augmentin twice daily. On Celexa 20mg daily. Now since March 2015 on prednisone- took 9 day taper which IMHO helped so much more than the IVIG ever did. Also vitamin D slightly low so on 50,000 iu D3 weekly.

 

Allergies are the trigger. We are sure of it now- been tested for everything and symptoms increase with the pollen count.

 

Our rheumatologist plans for him to get another IVIG soon, when school is out in 2 weeks, then attempt to wean off the steroids.

 

Here is the dilemma: if per PANDAS/PANS specialists you need to make sure any infection is clear before IVIG is given for it to work and do its job, what about with allergies that are always there? I am treating him aggressively for the allergies with claritin in am, benadryl 25 mg afternoon, flonase in PM and 50mg benadryl before bed plus sinus rinse in the evening. He cannot tolerate singulair.

 

Our rheumatologist says no way to allergy shots. But I have heard others say they have done them for this. What to do? His IgG level keeps declining, in the 500 range now but was higher in the 600 range before that August IVIG.

 

I wonder...if it wouldn't be worth it to try low dose sub Q imunoglobulin every 4-8 weeks and see what happens. We had avoided steroids for years as they were not really recommended for PANS, but that is what is keeping DS functional and not homebound right now. He missed a year of his life last year.

 

Thoughts?

[BradsMom]

Wow, I'm so glad there's someone else out there who, like me, is 100% certain that spring allergies cause horrific flares. Our DS18 started with pandas on 11/9/05 then progressed to pans even after strep addressed, now Dx autoimmune encephalitis. Every spring, literally the day I get an auto email from pollen.com that the count is detectable there's an instant change for the worse in him. This has been true every year and progressively worsened with each passing year. But as bad as this pollen year is, he's actually (God willing) improving and for once I have hope. We are now on Duke's protocol - rituximab treatment every 6 months with IVIG and cellcept in between. He's had IVIG every month since last dec (6 in total so far) and another rituximab infusion scheduled for June 2 and 18 (this will be his 3rd round), as his B cells are coming back. We've seen sudden mood swings on particularly bad pollen days but nowhere near the full-blown psychosis, violent behaviors, and neurological events of years past. I firmly believe IVIG is helping. Unfortunately I can't comment re: allergy shots as we've never tried them. What we're trying to do with rituximab + ivig is "retrain" his immune system to not react the incorrect way that it has for the past ten years. He has a long way to go, but I geniunely believe it's working. Good luck!

[sarojane]

Have you tried supplementing with powdered MSM for the allergies? Might lessen the histamine response.