I wanted to share what I just watched last evening for those of us with children who have been affected by Mold.
Mold was what lead to my child becoming diagnosed with PANS. Our genetics and the environmental toxicities in that were in our house caused my child's immune dysfunction, and my child's immune system now mistakenly attacks the brain causing inflammation in the areas of the thymus and the basal ganglia.
I don't want to infringe upon her privacy too much and talk too much about what she has been through, but I will share that it has been absolute hell. The best thing that happened for her is that she has an research-obsessed, assertive mom for an advocate and I wouldn't back down from figuring out what was happening to her and how to best help her- no matter what dismissal or resistance I met from anyone.
PANS/PANDAS usually takes between 3-5 years to get a diagnosis;
we got our diagnosis in 9 months, after I finally made the leap from our standard pediatrician to someone more open to investigating her situation and helping us.
I will forever be grateful that my body and brain fell apart completely from mold exposure first- before anyone else in my family seemed too affected. I will also forever be grateful that I found a knowledgeable doctor who told me it was from mold, so my husband and I had a real direction to go in. After I experienced my own nightmare with health from mold, I knew it was a real fucking beast that can affect literally every single part of your body and brain, and I have been spending at least 2 hours every day since I got diagnosed researching it's systemic effects on adults and children. When I first read about PANS and PANDAS, I remember mentally noting to come back to it. When I was coming out of my cognitive haze enough to really understand and assimilate new material again, I re-read about it, looked at our child, and thought... Holy Shit.
The road to recovery from Mold Illness is hard enough, but our child also has a second recovery mountain to climb- PANS. I am thankful that we have been able to assess and begin treating for PANS as soon as we could, because earlier action leads to a better chance of full recovery.
If you suspect PANDAS in your child- MOVE YOUR BUTT and find someone to test for strep (throat, perianal, AND blood titers).
Advocate for your wants in a calm and rational way, and reiterate that these are only tests and that the harm for missing strep if it is present in your child is far greater than the time and energy it takes to test.
You should have been keeping note of your child's symptoms as well as any relevant information that you feel may help along warranting a diagnosis.
If you are thinking it may be PANS- find a doctor that will check your child for mold, mycotoxins, lyme, or some other internal stressor that is affecting your child. You can also check your house's mold status by ordering an ERMI and HERTSI test to get a glimpse of water molds are in your home. These could be affecting your child. (25% of the population as a genetic disposition that is unable to remove mold toxins from the body, so they build up and cause damage.)
In our case I suspected PANS and I submitted a bunch of information proving our home had mold, that I was medically compromised by it, and that we had genetic reason to be greatly affected by mold ( I had DNA results for myself and my children potentially share those genetics) . My requests for testing for our child were still denied- so I went outside of the pediatrician's practice immediately and found an environmental doctor that was receptive to my requests immediately. More on this in my previous entry: https://bhagen6.wixsite.com/website/post/advocate-for-your-children
Here is some info on PANDAS and PANS from my doctor's website:
Here is some more info on PANDAS and PANS:
And yet more info:
And the grand finale, a Documentary about PANDAS and PANS entitled,
"My Kid is Not Crazy"
I watched this last night and finished this morning and found myself so so so so strongly identifying with the parents and situations I saw. I also found myself absolutely seething in rage by the end, wanting to physically demolish anyone that still is trying to argue for whatever bullshit biased reason that PANDAS and PANS aren't real.
Please watch to learn. Please watch, you may be able to help some child out there escape a life of medication and incorrect diagnosis.
You may be able to help a child get their life back.
...And honestly, you may help an entire family their lives back.
"My Kid is Not Crazy"
I'm starting this second video today as I jump into my sauna to kick a lingering infection, so the jury is out on it atm, but I'll include it for now:
It definitely was worth the watch, and I will keep it up on this page.