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Posted

What has really helped your child's anxiety?

 

Neither ABX nor IVIg has ever helped DD14's severe anxiety and OCD (scrupulocity). In fact, it has gotten worse over the past two years. Tics are 100% gone with IVIg, rages about 90% reduced (except in exacerbation or if she accidentally ingests red or blue dye), grades have gone from Cs and Ds to all As, but anxiety is really severe. She is too anxious to interact in class (a 180 degree turn from past years). She is also complaining of brain fog. She has low muscle tone and problem with her knees. Hair lately has been falling out excessively though that could be due to hormones or the heated hair straightner she has been using.

 

She takes Omega 3, NAC, quercetin, and motrin, in addition to augmentin xr, diflucan, probiotic, milk thistle, vitamin D, digestive enzyme, and melatonin. She also takes epsom salt baths and we have tried CBT/ERP. 30-day tapered prednisone helps all PANDAS symptoms except for anxiety/OCD.

 

I am beginning to think that she may have a co-infection and she will be taking the IGeneX basic lyme and complete co-infection panel as soon as we receive their kit. We have tested for lyme in the past but never thru IGeneX. We do live in a lyme-infested area. In fact, one of the horses DD cares for has been diagnosed with lyme.

 

Her colonoscopy/endoscopy in July came out completely clean (no pun intended). Colitis is all gone. No yeast problems. No longer sensitive to gluten, casein, soy, and other foods. She is lactose intolerant.

 

Plasmapheresis is off the table for now. After what happened in August GU won't take her.

 

So until we can find a better solution, we need to try more naturopathic interventions. Out of desperation we tried Klonopin over the weekend and that made her violent. Add that to the long list of failed psyche meds. She was the one who begged me to try.

 

Looking for ideas. Thanks!

Nancy

Posted

my son takes some supplements successfully for OCD/anxiety, but am not sure how these may or may not interact with your PANDAS treatments

 

he has found samE very helpful, along with a little Inositol

I am not sure if one can take samE along with NAC

 

my son also finds it essential to have daily methylB12, P-5-P(B6) and D3

he notices an immediate up in his symptoms if he skips those

 

drinking lemon balm tea and smelling jasmine oil have been recent additions that he finds truly remarkable!

Posted

Hi Cheri,

 

Thanks so much for sharing what is working with your son. I am not familiar with samE but I will check it out online and also ask our DAN doctor. She cannot take Inositol as it has a paradoxical affect on her. Same with methyl B12 and P-5-P. They really exacerbate her moods. She takes D3.

 

I will try giving her lemon balm tea and using jasmine oil in our mister.

 

Thank you, Cheri!

Nancy

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