Preventing PANS/PANDAS?

[Beachykeen]

Two of my children were just diagnosed with PANS/PANDAS (not certain of trigger(s) yet). They were both "slow onset" (although my daughter has had symptoms for as long as we can remember).

 

I have a third child (age 3) who is showing some signs of PANS - anxiety, extreme insomnia, aggression, peeing in his diaper again at night after being dry for a while now.

 

My question is - is there any way to prevent PANS/PANDAS? I am so desperate to do anything I can to prevent this from happening to him as well. We eat VERY clean - always have - he's on some methylation support, etc.

 

Thank you for any advice or thoughts you can offer.

[dcmom]

I would say, sadly, that if a child is symptomatic then they already have the disorder. The only advice I would give, on this journey for 7 years with 2 kids, is to treat each flare up as quickly and aggressively as possible. When we have been able to do that, they have done great. We find that we need to treat with several components; immune treatment (steroids, plasma pheresis, etc), psychological treatment (CBT and ERP therapy), and yes psychiatry (we have seen great success with prozac- waited too long due to fear to try) and of course the unavoidable time and patience. Get yourself the best neurologist, psychologist, and psychiatrist that you can afford. Get IEPs immediately at school.

 

And, although my kids don't have lyme disease, with you mentioning a slow onset I would probably look into lyme (and frankly I don't say that lightly, because I think it is impossible to get proper diagnoses there). Many on here can and will talk to you about lyme. I will say that the practice of lyme treatment is overwhelming and scary from the outside, and the ability to get a clear diagnosis is tough (it SO depends on what doctor you go to). The hallmark of strep induced pandas is an overnight onset- (which does worsen over subsequent weeks), this is what leads me to think it could be likely lyme is involved.

 

good luck- they will be okay-

[Wombat140]

There's some things in the "Your Child has Changed" booklet about precautions to avoid catching strep infections, if you already know your child reacts to them. Not quite what you asked maybe but could be useful.

 

I agree, at least I don't know much about it but logically if he's showing PANDAS symptoms, then there's already a PANDAS reaction going on in there, so that needs treating. Possibly if you treat that (get rid of the infection) promptly, before his immune system has time to get too hysterical about it, that might mean it'll be less sensitive in future than if the situation had run on for a bit, as it presumably did with the other two. I'm just guessing there though, based on something I vaguely remember hearing. Can anyone comment? Is that a real theory or am I imagining it?