PANDAs - Rages

[SarahS]

Hi everyone,

I'm new to this forum, but I thought I would reach out since I've read a lot of helpful advice on these threads.  My son (10 yo) started experiencing tics and depression after a bout with impetigo. He spiraled downward pretty quickly with suicidal thoughts, bad tics, separation anxiety, severe irritability, etc.  We read about PANDAS because a friend's daughter had it and found that many symptoms were similar as it seemed like he changed overnight.  We brought the idea to our pediatrician, but she quickly said it's not PANDAS because his ASO titer was normal.  A friend suggested Advil which we have been giving him and it seems to be helping.  We then found an amazing ND who was open to the idea of it being PANDAS, put him on Augmentin right away and did bloodwork.  We are also waiting for Cunningham Panel.  The bloodwork came back showing severe strep infections in the rectum and throat and a low Imuglobin A.  Our ND thinks that he may indeed have PANDAS.  We are on day 4 of the Augmentin and we can't really tell if it's helping yet.

He has been having extreme rages that have gotten better since he's taken the Advil, but are still happening (mostly at night or when he's due for another dose).  I'm wondering if anyone has advice for us as far as how to help with the rages.  He goes absolutely crazy (and he was an extremely calm and peaceful kid before this all started - an "old soul") and it's like he's possessed.  He wants to hurt himself and he hits himself in the head and he screams and writhes around on the floor.  Very scary and heartbreaking to watch.  Any advice on how to calm him down once he starts raging for those who have experienced something similar?  It comes out of nowhere so hard to figure out how to avoid it.

Thanks in advance for any advice!

 

[laure]

Hi Sarah,

I feel for you and have been there! For detox, there are many protocols:

epsom salt baths- several a day

alka seltzer gold -as often as allowed

burbur drops- 20 drops every 2 hours

inositol- high doses (like 3000 mg) twice a day

saunas- twice a day if possible

We also tried to get as much exercise as possible.

melatonin at night helps with sleep.

Read "Saving Sammy" - it's a good info source.

 

 

 

 

 

 

 

[HopeinHIM]

Wow.  So sorry. I will attempt to send you a message. Best we talk via phone bc too much here.   Our son had a very similar presentation.  The pain to watch this is unbearable I know!  If I don't contact you leave me your contact info and if you like I can give you a call. For some reason I cant leave you a private PM

 

[tj21]

So sorry about the rages!

DS17 still flares from time to time, but nothing nearly as bad as before we started treatment. We used to use Benadryl 25-50mg (start low and watch for paradoxical reactions), Atarax (MD rx), 3-4 caps activated charcoal (detox) 2 hours away from any meds, and Ibuprofen.

Hang in there.