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I recently had my 5yo daughter tested for PANDAS due to behaviors that seemed to really fit the bill and that in hindsight, could have began immediately following a fever or unknown origin.

 

The following were the results that came back abnormal.

 

ASO: 395.7

Anti DNASE b 554

Mycoplasma Pneumonia IgG 112 (dr says this is an insignificant elevation)

 

Easinphils 0.5

IgE 1611 (!!) -- this prompted the doctor to order basic allergy panels. Wheat came back at 0.13. Said daughter has never had any kind of classic allergy symtoms or reactions.

 

From my preliminary google research, these food allergy panels have many false positives...

 

Just wondering here if it's possible that just the wheat allergy alone is causing PANS like symptoms? Or is the elevated IgE indicating an inflammatory/autoimmune reaction going on and the allergy is just a false positive? Dr says elevated strep antibodies are high but not conclusive...

 

Or is it all the gut/immune system/brain connection...

 

Would like to know so we could know which direction to take with treatment. Symptoms are relatively mild right now, primarily jumpiness/impulsivity/silliness (looks ery much like adhd, but I know my daughter doesn't have adhd), mild insomnia and lots of food restrictions. But we've had tics, stuttering, anxiety, meltdowns, rages, agression in the past, these seem to be mostly resolved but still rear their head every now and then, especially after an illness or when tired...

 

I know we can just cut out wheat as a trial and see what happens, but because of the food restrictions I don't want to go down that route without a little more clarity. Been contemplating GAPS/SCD but hesitant for the same reason.

 

Would really like to avoid abx if at all possible... Would appreciate any insight.

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If an allergy is causing pans symptoms, it should still be classified as PANS. This I get from the figure below, which comes from http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/ :

 

Heirachy-of-PANS-with-credit-copy.jpg

In the non-infectious triggers of the lower branch is environmental factors (which can be allergies).

Although you should cut out wheat regardless of whether it is a wheat allergy or whether it is PANS, there is (in my mind) a significant difference between allergy and PANS, besides the typical symptoms of each. PANS seems to develop other triggers over time. Some other time, it could be strep, or some other bug that the child encounters. It seems like you have already seen that. But a food allergy could also be prompting the immune system and also causing a PANS flare. This is why some PANS kids improve when gluten is eliminated.

I wonder if "daughter has never had any kind of classic allergy symptoms or reactions" is just like the PANDAS child that flares with strep, but doesn't seem to have a particularly red or sore throat, or any other symptoms of strep.

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Thanks for responding.

 

If I'm understanding you correctly, you're saying that it could be allergy-triggered PANS, or an exacerbation of PANDAS/infection mediated PANS. And that cutting out *gluten* (not just wheat?) is a good idea regardless. Did I get it right? Should I cut casein too while I'm at it? Will cutting gluten (and dairy) be enough, as opposed to cutting all grains like in GAPS/SCD?

 

Do you think this alone can cause a reduction in symptoms? As of now she's not on any other treatment. Nor did she get an official diagnosis. There's a PANDAS-literate pediatrician in our area but she doesn't accept insurance and charges $$$ for consults, and the only treatment approach she offers is long, long term abx, more specifically zithromax.

 

Just putting this in here in case anyone reading has an answer: although my daughter's not vaccinated, her symptoms are leading me to believe that her gut is somehow compromised. I was always under the impression that healing the gut and antibiotics are mutually exclusive, yet from perusing some of the threads here, it seems that some do both at the same time. Just wondering how this works. My daughter's never taken antibiotics in her life (except during her birth when I got IV penicillin for strep B). My gut (excuse the pun :) ) tells me we'd see a drastic reduction in symptoms with just a short course of abx, yet for some reason I'm so, so hesitant to go this route. Any advice?

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Would like to know so we could know which direction to take with treatment. Symptoms are relatively mild right now, primarily jumpiness/impulsivity/silliness (looks ery much like adhd, but I know my daughter doesn't have adhd), mild insomnia and lots of food restrictions. But we've had tics, stuttering, anxiety, meltdowns, rages, agression in the past, these seem to be mostly resolved but still rear their head every now and then, especially after an illness or when tired...

 

I know we can just cut out wheat as a trial and see what happens, but because of the food restrictions I don't want to go down that route without a little more clarity. Been contemplating GAPS/SCD but hesitant for the same reason.

 

Would really like to avoid abx if at all possible... Would appreciate any insight.

 

My DD had similar symptoms at that age. She was also severely constipated and was a very slow grower. We eventually figured out it was lyme causing these symptoms.

 

My recommendation as a starting point it to work on toning down the inflammation in her body and getting the gut in a good place. I would cut out gluten and incorporate some good probiotics. I didn't completely cut out dairy b/c I needed to add some of that fat in her body (plus she was a very picky eater). I tried to give her as much protein, vegetables, and some fruit at every meal. The GAPS diet was too overwhelming for our family to incorporate (although I do think it's a wonderful approach to healing the gut).

 

Have you considered testing her for celiac? Celiac can mimic ADHD symptoms. We tested out DD with both blood test and had her scoped. She came back negative, but we still cut gluten out and saw immediate benefits (she felt better, ate more food, and was calmer). We also began the BRAVO probiotic yogurt and saw major improvements. The colostrum in BRAVO reconstitutes the gut. After a year on BRAVO, we felt her stomach was in a much better place to begin treating for lyme.

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Thanks so much for responding, maybaby. How long did it take you to see a change in behavior on GF diet? And when you say you started treating for lyme after a year, do you mean you treated with abx? Did that not undo all that healing?

 

We did not test for celiac, I don't think I have to go looking for that with that positive blood allergy test... Also, she does not display any symptoms of poor gut health, aside for sugar craving and very poor appetite/intake of regular food. But she wasn't always like this, so I doubt it's celiac. I will definitely put her on a good probiotic. I've read on here that we should avoid one with any strep strains in them...

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thanks so much for posting this. I found a few answers to my questions... there's still a lot for us to go through, I know it... but I'm just so tired. I'm tired of hearing about pandas, about antibiotics, about medicines in general, even tried Ansomone, an HGH. we've tried different stuff and so far everything's useless....

Edited by Therromes
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