PANDAS/PANS Advice

[Kaisersozeh]

Curious to listen to thoughts for treating a very difficult case....

Young teen female, indeterminate Lyme panel, evidence of past Epstein Barr virus, diagnosed with PANDAS/PANS (http://www.pandasnetwork.org/), vocal tics (screaming) which have evolved into anger outbursts (punching, kicking holes in walls), cannot stand any type of clothing, allergy panel shows allergies to virtually everything (dust, pollen, mold, dairy, soy, wheat, most fruits, most grains, etc), several IVIG treatments which did nothing, condition continues to worsen by the day..

On advice of traditional Dr. the patient has been on orap, clomidine, augmentin, prozac...concurrently! Parent stopped cold turkey everything but prozac which has been titrated down to 20mg QD. Program is to drop by 5mg per week.

Current recommendation: one Dr. says Namenda. Another says Abilify in order to stop aggression to allow further IVIG treatment. Dr.'s seem to think the brain has considerable inflammation and that IVIG is needed to remove all of the "sticky antibodies" causing the behavior.

From a Peat point of view where to even begin? Is the behavior due to detox? From a bioenergetic view, where to begin to help ameliorate symptoms?

Thank you for taking the time to read.

 

[mayweatherking]

Peat is just about fixing all nutrient deficits and getting enough food and the right food to put your hormones in optimal ratios and amounts. I really dk about this condition.. But honestly just take the regular peat way and see what happens... Like temp pulse liver oysters calcium magnesium zinc b vitamins copper all from food of course etc etc

 

[tara]

She sounds really stressed.

I don't know much about the specifics of what a PANDAS/PANS diagnosis involves, but I just got that it is thought to involve brain inflammation and autoimmunity, and be triggered by infections or other stresses. I have no medical training or qualifications. This is just speculations.

Some things to consider if they haven't been already:
- Checking thyroid function? By lab tests and/or body temps and resting heartrate and/or other signs? A brain short on basic energy scan be more prone to inflammation and over-excitation, and increased vulnerablity to allergies.
- Getting PUFA intake as low as possible? Brain inflammation interests me - I've come across at least one reference specifically to PUFAs tending to contribute to inflammation of brain tissue compared to SFAs. I imagine any significant stress, including drops in blood sugar, could release problematic amounts of PUFA in the brain?
- Is there any correlation between more acute episodes and hunger?
- Any idea how the habitual breathing is? Relaxed, diaphragmatic, nasal? Hyperventilation, even at a level that is hard to see, can make the nervous system more touchy. Some techniques from Buteyko or other methods for raising CO2 levels might be relevant? CO2 helps calm nerves as well as help with oxygen delivery and energy production.
- How's typical basic nutrition? Calories, carbs, protein, vitamins, minerals? Sometimes a specific deficiency might set up a bottleneck for energy production. Even if basic RDI's are being met, sometimes higher doses of some nutrients can be needed/helpful. Consider adding some liver, orange juice, leafy greens if not already in diet, and possibly supplements to make sure nutrition is generous. B-vits can sometimes make a difference. Generous Mg, in whatever form she can absorb (sometimes transdermal - epsom salt baths or Mg oil work well) can be relevant for letting nerves relax. Low blood sugar can worsen allergies. Sometimes increasing NaCl intake can help against allergy.
- How is bowel function? If there is chronic constipation, that can set up for excessive endotoxin being absorbed into the system and causing trouble in various places. What helps with this seems to vary - some people find the raw carrot salad makes a useful difference.
- If the issues have come on along with puberty, hormonal imbalances could be at play, sometimes including higher estrogen:progesterone ratio. Raw carrot salad can help remove bile-bound estrogen from the gut before it is reabsorbed.
- Getting sunlight on the skin might help. Or supplemental red light if no sunlight available? Helps restore cytochrome oxidase enzyme, and so general energy production.

- I wonder if the prozac could have exacerbated things? Wonder whether an opposite tactic, eg cyproheptadine might be helpful? It's antihistamine as wells antiserotonin, and has a much better safety record, IIUC. I don't know the other drugs you mention.

Good luck - hope she/you/parents can find a good way forward.