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Robinhubb

Supplements

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So with my daughter. She has been taking oregano oil, and probiotic

We got cbd oil today and since im having such a hard time finding a doc in houston, i have 10 days worth of penicillin.  Should i try that as well. Im adding cbd oil and milk thistle tonight. Sorry for being so annoying.  I know most of these threads are old and many people dont look at these anymore. Wish us luck! Shes becomming very clingy to me and her thoughts are brutal. Im doing everything known to man besides putting her on phyc drugs. I cant do that to my baby!!

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I think that is Olive Leaf Extract.  There are many positive posts about it here.  I may try it for my DS as well.  Also, I believe some of the premier PANS doctors recommend Goldenseal.  From the older posts it looks like some families use Goldenseal along with the Oil of Oregano, as an alternative to antibiotics.  

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I'm sorry you're having trouble getting a doc to help, it's so frustrating. This board was so helpful to me. Like many kids, my 15 year old daughter was diagnosed with PANS after many years of suffering. She is on a lot of supplements, so it's hard to know which ones are really successful! We use:

  • Enhansa for inflammation - follow the guidelines for slow introduction, we noticed a big herx as is said might happen.
  • For anxiety, we use CDB oil and Lithium oratate.
  • Her 23 and me showed folate issues, so she takes Methyl Assist.
  • Magnesium Citrate along with Buffered Vitamin C for constipation (as needed, which used to be all the time at the beginning of treatment!) - I can't stress enough the brain/gut connection to think about during treatment.
  • She takes Thera-lac probiotic too
  • And Super Lysine Plus for immunity support.
  • To balance out the stress of so many years of anxiety and poor sleep we use Cortisol Manger, and Seriphos - I think these are at the bottom of the list of what I think has really been helpful though
  • And, she is on the low-FODMAP diet

Upon initial diagnoses, her PANS doc put her on Augmentin which was amazing. Came off of it, flared, tried Zithromicin, didn't work, went back on another month of Augementin, came off of it, and stayed well. During flares, unless her bloodwork shows something, we use a month of Naproxen (regular over-the-counter Aleve) - and it works beautifully. So, treating the inflammation seems to be key during flares. I would think also that a too-short supply of antibiotics is not going to help.

Now, my son, who does not have PANS that I know of, but is suddenly dealing with extreme intrusive thoughts and OCD (my daughter's was just EXTREME separation anxiety and EXTREME generalized anxiety) I'm taking what I know about inflammation and scouring this board for help - and trying some things with him:

  • NAC - an amino acid that has had some documented success helping OCD in larger doses
  • L-Theanine - another amino acid that promotes relaxation and calms the brain and elevates GABA and serotonin
  • I just started him on Enhansa last week. Reason being we just found out that he's allergic to EVERYTHING - grass, trees, weeds, mold, dust, cats, chickens (we have eight), dogs (we have three) guinea pigs (we have two). So he has started allergy shots, but in the meantime I can only think that there is inflammation in him from all of these undetected allergies.
  • His probiotic is called Mood-Super strains - with strains that are geared specifically towards anxiety and depression

I just learned about this product yesterday from my sister-in-law. My son's cousin, who has OCD, takes 5-htp (another amino acid) and he says it helps a great deal. She uses the Natrol brand. He does not take any pharma for his OCD/anxiety, and said when he stopped taking the 5-htp he noticed he felt a lot worse, so he now takes it again.

As far as pharma for my daughter for her anxiety, we held out as long as we could, but she became unsafe and jumped out of a moving car. So we eventually we put her on an SSRI - it worked a bit, but never really well, so we switched to another, it also worked a bit but never really well, so we added in another, which, as expected, worked a bit, but never really well. Fast forward to a year after PANS diagnoses, and this truckload of supplement she takes!, she is off of all pharma, she took a class at the local high-school (and I didn't have to sit in the class with her, lol!), she now sleeps over at friends houses, and is enrolled in the Community College for the fall. So while the psych meds helped a bit, they were not the final answer for us.

Sending you good thoughts for your daughter - and lots of good thoughts for you too! Hang in there mom!

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