Last year at this time, things were very different.
We were dealing with a new diagnosis of PANDAS and each day seemed
harder than the last. Her tics and OCD were rampant. Switching from one
antibiotic to another, tracking the changes, about to lose our minds with worry.
In the right sidebar, you can find a list of the blogs I posted at that time and a
video about our journey out of PANDAS.
In 2012, you haven't heard me mention PANDAS much at all. But still the
questions come.. Are we still using Goldenseal? Have her tics come back?
I decided it was time to dish on PANDAS, 1 year out. So here are the most
frequently asked questions:
Do you still use all the herbs in your Old School blog?
Yes, and no.
The basics are the same, but there have been changes.
Here's what we use now:
Goldenseal (GS) -- 500 mg, 5x per day
Oil of Oregano (OoO) -- 3 softgels per day
Berberine complex -- 200 mg, 4x per day
As needed if bacteria symptoms increase:
Neem Plus -- 1/2 cap, 4x per day
Alimed -- 1-2 drops per day
As needed for acute illness only:
Olive Leaf Extract (OlLE) -- 200 mg, 4x per day
Elderberry -- 1/2 cap 3x per day
(both are pure encapsulations)
Can I use Goldenseal for more than 2 weeks?
Yes. This question I am asked more than any other. All I can say is that none
of my bottles have ever said anything about the elusive "2 week limit" and Dr
Usman said there is no such rule. She has patients on it long term.
Should Probiotics be given at a different time than GS?
I have been told that natural antimicrobials do not kill probiotics. Of course I
can't say with 100% certainty that they don't. But, if they do, we have a much
larger problem than giving them close to probiotics... we would have the
problem of killing healthy gut flora for over a year.
We don't separate herbs from probiotics. We do separate RX antibiotics from
Can I use GS with Antibiotics?
Yes, and you should! Goldenseal / Berberine and all of the other natural
antimicrobials may be targeting different strains than the antibiotics, so I would
Is PANDAS only Strep?
No. It can be many different strains of bacteria and some doctors believe it
can even have viral triggers. So much is unknown. To encompass the
broader definition, the 'official' name was changed to PANS: Pediatric
Acute-Onset Neuropsychiatric Syndrome
Negative Strep Does Not = No PANDAS / PANS
Caroline never tested positive for strep, but was diagnosed by Dr Trifietti
based on her symptoms, her improvement with treatment and her low immune
Are her tics still gone?
Yes.... 99%. Primarily because I have learned to react immediately when we
notice even the slightest coughing tic, tapping tic or out of the ordinary OCD
I believe that with so many of our kids, the balance of yeast and bacteria is
critical. It's somewhat like a terrarium.
When things are well balanced, everything is beautiful. Life is happy.
However, when one side begins to overgrow and dominate, things can get ugly.
At our house, we are back to using Diflucan for yeast, on an as needed basis.
So here is how things play out...
Caroline is always on natural antifungals. But when I see signs of yeast -
usually climbing on furniture or inappropriate drunken laughter - I add a low
dose of diflucan (about 50 mg per day)
I give that to her for a few days or until I see a bacteria related behavior.
At the first sign of a tic or OCD behavior, I immediately stop the diflucan and
increase Goldenseal (from 4 to 6 caps a day) and add in Neem.(2 caps) and 1
drop of Allimed.
Yes - Allimed and Neem both are said to also be antifungals, but for us, they
help in this case.
In every instance, which there have been MANY, the tics stop and the cycle
I don't bring back the diflucan until the naturals can't seem to keep up.
Do I feel like I'm trying to balance a long pole, walking on a tightrope? You bet
I do. But it's gotten easier with time..... and I'm pretty sure by now I could
almost do it blindfolded.
The house was buzzing. Kids running, toys whirring, people we seldom see
talking and laughing. It was loud. It was a party.
Cousin Maddie's 4th birthday.
And where was Caroline? No, not pacing in a vacant room, not tugging on my
sweater, pleading "car, go home!" Not even hiding in the basement.
There she was. She had found a comfy spot in the family room and was sitting
amidst it all, just watching. Taking it all in.
What a difference a year makes
Maddie is my sister's daughter. She's 2 1/2 years younger than Caroline. And
may have possibly been spared from vaccine injury because of Caroline.
She's as typical as they come and she's my Goddaughter. And yes, it's hard.
So very hard to watch her pass Caroline one skill after another.
When she was 18 months, and Caroline was 4, Maddie had more language.
When she was 3 and Caroline was 5 1/2, Maddie had better social skills.
Now that she's 4 and Caroline is 6 1/2, the differences are glaring.
Watching her grow up has brought smiles and tears. Every milestone she hits
But her 4th birthday was different. Caroline was calm. Engaged. Present.
I felt as if there's hope. Real hope that we are going to find our way out of this
and someday she and Maddie can be friends.
You could see it in her eyes. A glimmer. An interest. An awareness that
hasn't been there before.
As they sang Happy Birthday, she stood and watched. No wrestling away while
we fought with her to stay and sing with everyone else. She was a participant.
She was engaged. You could see in her eyes, she felt she belonged.
New additions after the Goldenseal blog:
Can we do Andy Cutler Chelation with PANDAS?
Yes, but... when Caroline was first diagnosed and things were at their worst.
We took a month off. There was no way to chelate a child who was so sick.
When we started up again, we used only ALA only.
I caution parents to carefully consider the use of DMSA with a child who has a
weakened immune system. It can temporarily lower neutrophils, which is not
something you want if your child is having a hard time keeping bacteria in
How's it going with Caroline?
This is my favorite question, because I'm so proud to say, she's doing REALLY
She's enjoying first grade and learning a lot. She's thriving. At my
Goddaughter's birthday, I didn't feel sad comparing her to a 4 year old
anymore. Instead I felt hopeful. We are getting somewhere.
We learned how to beat PANDAS. We're learning how to beat autism. And
it's going to be alright.
We might be walking on a tightrope still, but we're moving forward and
someday soon, we'll reach the end.
We'll get off and not have to worry about the terrarium or the tics or the
climbing on furniture.
Things are easier to control with each passing week.
I believe chelation is helping as it repairs the immune system as well as all the
other things we do. Starting up HBOT treatments again has already brought
improvements such as more awareness and comfortable in her skin, and we're
only on hour #6.
Her demeanor doesn't change with the wind like it used to. Life is calmer, we
know what to expect.
We haven't seen a meltdown in probably a year. I can't even recall the last
And that, is something I NEVER thought I'd be saying.
If you're in the midst of a healing crisis - don't give up - keep putting one foot
in front of the other. The change feels slow, but over time, it adds up. And
one day, you, too, will look around that think... I'm not sure when it happened,
but wow, LIFE IS GOOD.
At Cousin Maddie's Birthday Party