What Pandas Treatment Means to Me

 

 

 

 

 

 

 

 

 

It’s over 10 years now since I have been treating children with PANDAS in my practice. I still think about PANDAS all the time. These are the main things I have learned about treating PANDAS, for what it’s worth. It’s just my opinion today - and could change tomorrow if I start seeing different things.

  1. PANDAS treatment, to me, means to identify and treat the Infections, reduce the Inflammation and correct the Immune dysregulation.

  2. PANDAS looks like alot of things, and its easy to get caught up in treating the symptoms and forget the underlying mechanism which IS the immune dysregulation. It reminds me of a house with a broken foundation. As it settles, the walls crack and the floor may crack or buckle. You can keep fixing the walls and the floor but unless you fix the foundation, it won't work.

  3. If you treat the strep and other known infections, and do IVIg and it doesn't stick, and you're certain that the history points towards PANDAS, then you're missing some big immune trigger. Tonsils, mold, or gut issues, or other autoimmune like celiac or certainly, other major infections of some kind.

  4. I personally believe that kids heal alot better with plenty of good essential dietary fats and phospholipids to protect their brains and stabilize cell membranes, along with a clean anti-inflammatory, low sugar diet.

  5. Adding anti-inflammatories and herbs and/or homeopathics to support the glands and organs of detoxification may help clear the biological terrain and extracellular spaces of toxins/ debris and expedite healing.

  6. If your child is on antibiotics, they probably need somewhere between 25-150 billion probiotic organisms daily, depending on their size.  Many children I see come in on antibiotics with no probiotic support (good bacteria) or not enough (like probiotic gummies) and this can cause its own problems, with yeast and other gut imbalances, digestive disruption, stomach aches, inflammation, etc.  Please protect the integrity of your child’s digestive tract and microbiome while treating PANDAS. Developing a yeast infection as a result of antibiotic therapy can cause discomforts and another immune trigger to flare your child, and can impact immune functioning.

  7. I believe that cranial and other structural work, in the hands of the most skilled professionals – can be a game changer. This may come from promoting the flow of lymphatic drainage and CSF in the head, and being sure that the cranium and neck are in proper alignment.

  8. I believe in IVIg. I'm not saying it’s the only way to reboot our kids' messed up immune system, but it’s a good, solid, tried and true way. Maybe the best way. I’ve never had a parent say oh, I wish we hadn’t done IVIg. But I’ve had many parents say, oh, I wish we had done it SOONER, once they see their child recovering. Thousands of people around the world safely get IVIg every day for a hundred different reasons. Insurance issues suck. Many people think they cannot afford to do IVIg for their child. We ended up with friends creating a huge fundraiser to do our first IVIg, and yes, it was humiliating in some  ways. but I would do again in a heartbeat if I had to.  It beats the day in and day out suffering of needing to do it and not doing it, while your child is struggling. If you feel in your heart, that you really want to do IVIg and you don't think you can because of money, I invite you to be brazen. If you need support to think out of the box, talk to me and I’ll brainstorm with you.  These days, IVIg gets covered by insurance more than half the time. Some IVIg companies offer a copay assistance program that you may qualify for.  Regardless, if you let money stop you from getting IVIg for your child, you may be making a mistake.

  9. Neuro re-training programs are extremely helpful as kids are healing their brains and nervous systems. Alot of things can be included here, such as CBT, DNRS and other cognitive or neuro-repatterning and neuro feedback programs, as well as some body-centered therapies such as Feldenkrais and Alexander Technique (in the right hands, of course).  Brains that have been impacted by PANDAS/PANS cannot rewire themselves, even when the inflammation is gone.  Consider EMDR and trauma therapy as well, for them or for yourself or anyone in your family who has been damaged by the trauma you have all undergone.

  10. I seriously believe that facebook saved my life when we were in PANDAS hell. I'm always super grateful to the moms in all of the virtual supports groups and on the PANDAS forums for being there for me and each other. Thank you a million more times. 


I hope you find something in my little list that is helpful. EVERYONE IS DIFFERENT and there is no one path for our kids.

NEVER EVER EVER   GIVE UP

Amy Joy Fishman Smith

Nurse Practitioner

AMY JOY SMITH

714.782.0042

NEW Office Location

Integrative Medical Institute of Orange County

1440 East Chapman Ave
Orange, CA 92866

amyjoysmithnp@outlook.com 

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