PANDAS STORY + RESOURCES
UPDATED 4/2024:
Here is my IG highlight with more details: https://www.instagram.com/s/aGlnaGxpZ2h0OjE3OTk0NDM3MjkwODA1OTM5?igsh=MTM2cWh6dnEzbXF1eQ==
We’ve been with Resilience Naturopathic for 8 months now and have seen MASSIVE improvement. He’s doing well right now and I would highly recommend starting with them for homeopathy asap, as they specialize in PANDAS/PANS kiddos
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Okay so here’s the story - I knew about what PANDAS was from just being in the health world - seeing it in holistic groups I’m in and our oils groups. I knew it came from strep but that was it. None of my kids have ever had strep.
In the spring, I kept hearing of moms talking about strep going around really bad this year, and also presenting in really odd ways. Like it wasn’t a sore throat, but stomach issues, or colds, and it ended up being strep.
In May, Grey (age 9) had croup for the first time, which also presented really weird - he wasn’t sick, didn’t even have a cough. He just came in my room one night at like 3am, coughed once or twice and I knew it was croup from the sound, and he had stridor where he couldn’t get a breath. I knew to put him in a steamy shower and in front of a freezer (cold air) - the freezer worked best for him and I grabbed a bottle of Breathe Again which he held right under his nose. Eventually I ended up taking him to the hospital bc it was my first time dealing with it and he was still struggling. He held the breathe again under his nose the whole car ride there and by the time we arrived he was totally fine.
Turns out, croup is the worst in those early morning hours like 2am-5am for some reason. They gave him a steroid and we went home. He was again, totally fine. No other issues.
The next night, Mila had a little trouble but not like Grey did, and she said her throat hurt. I don’t know what made me go “shit I bet it’s strep” but hearing about all the weird ways it had presented for other moms I just kind of knew. So i took her in for a strep test and yup it’s strep.
So I then had Chris take Grey and Jax in for strep tests also - they all had strep. So all three were on their first round of antibiotics ever - I’ll try and treat just about anything naturally first, but not strep.
The next week, Grey came home from school and was super pale, said his head and belly hurt really bad. We were about to have Jax’s 1st birthday celebration, so I had him just lay down. He laid on the bathroom floor (his choice) for an hour, just laying there, not really moving, but was like - fine - just laying there.
Then, he got up and was fine. He said he felt normal again. About an hour later he was outside swinging on the swings and I noticed him doing this weird thing with his eyes. It looked like they were rolling to the side/back really fast. I knew it was pandas, and videoed it. I was hoping maybe it was some weird dehydration thing or something, and waited until the next morning to see how he was. I didn’t notice it much in the am, but when he came home it was really bad again. I took him to urgent care just to rule out seizures, and they also agreed it was pandas and said to make an appointment at the children’s hospital neurology dept.
I knew I wasn’t gonna do that bc they wouldn’t do shit for us, but I called anyways just to see. Couldn’t get an appt for 6 months. So basically useless. I said okay nevermind and hung up. I called his doc and made an appt for them to see him and they put him on one more round of antibiotics and said to come back in 6 weeks.
I ended up just deciding to work on it on my own and see what happened.
What I have learned in the past few months, through so many other family’s stories, and our own, is PANDAS is a bitch. It can show up overnight, and the symptoms can be severe and you can literally have a different kid in the blink of an eye. (Some common things are: tics like eye movements, throat clearing, repeating or motions or words, OCD, anxiousness, intrusive thoughts, no impulse control, depression, emotions up and down)
It can also be cured.
We have been lucky, as I caught this really early for Grey, and his tics and emotional signs have been mild. (His only symptom for a few months was the eye tics. They would happen every few seconds. Sometimes less, but it was VERY often. He didn’t really know he was doing it. After about 6 weeks of supplements, oils, homeopathy, and diet change - those almost completely went away, but then I noticed some emotional stuff - crying easily, and some OCD tendencies - very picky with clothing, will only wear the same two pairs of shorts, nothing too tight or the wrong fabric, has a meltdown if something changes that he wasn’t prepared for.)
For Grey, I think no one would notice any of this stuff at all - he has no issues at friend’s houses, or at grandparents, but at home is when we notice it, and it’s something we see because we are with him all the time and can see the slight changes.
I am treating this like he will NOT get any worse and I will heal him completely because his body is fully capable of healing and I have the knowledge and tools and resources to help his body heal. 👌🏻
It is difficult at Grey’s age - 9 - because some emotional or behavioral things are like - is this him being a normal 9 year old or is this an early new symptom of what could become a bigger PANDAS issue? I think it’s probably in most of our examples - it’s a little of both.
I’ve also learned that there are so many different things you can be using, and there’s no perfect combination that works for every child. And guess what - this is a life lesson for all things health and healing. Health is not one size fits all. Healing is not one size fits all.
Our goal has been reducing gut/brain inflammation, and eliminating any lingering Strep hiding in the body.
These are the things we are doing, or have done, for Grey. There’s also some other modalities we haven’t used yet or have used on and off. I also included a list of resources shared with me, and I will keep this updated as I learn more.
Some things that I notice cause flares:
food dyes
too much sugar
not enough sleep
^ this combination pretty much guarantees we will have a really shitty day full of bad attitudes and fighting and being mean to his sister and me and then me trying to be patient but ending up losing my shit and yelling and it is ROUGH for everyone. 😵💫
NUTRITIONAL RESPONSE TESTING
seemorehealing - abigail shipley (local to me)
grey’s showed a low-oxalate diet would benefit him, including no nuts except for coconut
gluten free (we didn’t do this fully, I know it would be greatly helpful)
reduce sugar MAJORLY
no food dyes
HOMEOPATHY
We first did a 2 month course of homeopathy, recommended by other friends who had dealt with the same thing:
Desbio PEPT:SSR
1/2 a vial every 3rd day, 1-10
then, other half of vial every 3rd day, 10-1
Ignatia is also good for PANDAS
After seeing his tics reduced to almost nothing with the homeopathy course we did on our own, and his supplements and oils, (i notice the tics now only flare up when he’s tired or had too much sugar or food dyes), i started to notice some emotional stuff and ocd tendencies (mild, but they can worsen suddenly like everything with PANDAS so i wanted to get more help.)
A friend told me about:
Resilience Naturopathic
homeopathy specifically for PANDAS/PANS kids - telemed out of san diego
we had a consult and our first intake visit with them and we just started grey on his first remedy. (carcinosin 30c is the first one we are trying for his case)
GREY’S DAILY SUPPLEMENTS
DRINK:
1-2oz ningxia
2 droppers mineral essence
1 dropper cats claw (mothercraft)
3 drops young living frankincense
1 dropper lemon balm (noble task homestead - annie10 is code)
1 tbsp barleans omegas
1 packet liposomal vitamin c
^ I mix this all together and he drinks it with a straw or just shoots it down
Then he gets individually:
1 spray mary ruth’s b12
OILS | DAILY
red cedar bliss roller on spine and feet daily
brain power on brainstem (geneyus works too)
reconnect over forehead
intouch over forehead
kidpower on wrists
frank on top of head
^ i do these daily, without fail
these i incorporate often, and i really should do more:
juvaflex over liver
digize on belly
raindrop oils on feet/spine daily
full raindrop every week
OTHER HEALING MODALITIES
zyto scan weekly for oils and supps to incorporate based on what how body needs
detox baths (1/2 cup epsom salt, 1/2 cup baking soda)
biocidin to break up biofilm
castor oil packs over liver
colloidal silver
binder (the warrior center has great info)
camel milk (jodie - the warrior center)
TRS (safeheavymetaldetox)
Healy device (zofia)
Resources
Truly SO MANY mamas who have walked or are walking this road reached out to me with so much support and guidance and help. I have pages and pages of notes from them. I am so so thankful. I didn’t go in and compile those notes to add here because there were just so so many. It’s on my list to do, and to confirm with those mamas it is okay that I share. But, here are some super helpful resources here. More to come!
Pandas/Pans Flare guide
the.holistic.mother
$25
https://theholisticmother.podia.com/pandas-pans-flare-guide
https://healthykidshappykids.com/2020/10/11/does-your-child-have-pans-pandas/
https://www.instagram.com/p/CGYniHJhmqo/?igshid=MzRlODBiNWFlZA==
