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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Hi,

It appears both daughters have PANS/PANDAS, after seeing many conventional specialists, and several believing PANS or PANDAS is the correct diagnosis.

Some symptoms I don't see frequently in the literature, though, and I wonder if they are related.

Abdominal pain. Several local doctors say they see that a lot in PANDAS patients. Why isn't it listed as symptom? That is the most-complained about symptom for both kids (they don't complain about the OCD (both), tic (one), anorexia (one) - that's all me!). We wasted a lot of time/energy with GI tests  and procedures that showed nothing.

Leg pain. Huh? Why? Is this related? Sometimes it flares at the same time as the stomach pain.

Joint hypermobility and/or Ehlers Danlos syndrome. Is this co-morbid? Loose ligaments as symptom? EDS kids more vulnerable to PANS?

I'm just wondering how many problems I have on my hands...  Thanks for any help you can give!

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I can confirm the abdominal and leg pain, but I can't tell you the reason. We assumed abdominal pain was from the antibiotics and leg pain coincided with puberty so we chalked it up to growing pains, but yes I could easily see it being PANS flair related. You have an inflamed brain at work here, mystery symptoms just seem to come with the territory.

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I found my daughter greatly improved when we seriously addressed candida and mucoid plaque.  There is plenty of literature that candida alone can cause anxiety and brain fog.  Add parasites to that list and you have a real problem.

Really, we should have done colonics, but DD did not want to.  So we did 1 saltwater flush, and then put her onto Diamataceous Earth for candida and OxyPowder for Mucoid Plaque cleansing.  After 3 days we started seeing a die off result.  After 1 week the results were really great.

I won't know if the abdominal pain was due to constipation, leaky gut, or parasites and candida or perhaps reaction to antibiotics.  Just mentioning what we feel helped her along.  (She is still off wheat and some dairy; claims it causes abdominal pain)

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My son only had leg pain when he also had Lyme & bartonella. I think it was a symptom of his infection rather than the PANS.  Also, for us, stomach issues were just a symptom of anxiety. Not sure how prevalent these physical symptoms are.... 

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Thanks. The stomach pain and leg pain were both prior to starting antibiotics. Two local PANDAS doctors have told me they see the stomach pain frequently. One even said: I see the kids all the time with full GI workups, lots of testing, and nothing shows up.

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Wow, It has been a long time since posting to this forum.  I had an e-mail from ACN this morning and decided to check-in.  

What kind of leg pain are your children experiencing? Shin pain and bottom of the foot pain typically first thing in morning is associated with chronic Bartonella.  GI issue is also consistent with Bartonella.  Thigh pain is associated with Babesia.  

 

Here is a great article on Bartonella.  You might consider evaluating your child for Lyme and co-infections.  

http://townsendletter.com/July2015/bartonellosis0715.html

I've copied and pasted specifics portions of the article for your review.

The more common symptoms of Bartonella include swollen lymph nodes, gastritis, sore soles of the feet most noticeable in the morning, fasciculations (muscle twitching), headaches, abdominal pain, striae (irregular areas of skin that look like stretch marks), skin rashes, tender subcutaneous nodules in the extremities, fevers, anxiety, depression, anger, and obsessive-compulsive thoughts or behaviors.

Bartonella patients often describe a number of psychoemotional manifestations of the infection. These may include anxiety, depression, anger, obsessive-compulsive thoughts or behaviors, rage, and even suicidal thoughts. 

Edited by sf_mom

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One PANDAS specialist I saw a few years ago (Dr Goyal, no longer practising as far as I can find out) did say that hypermobility/type three EDS was associated with PANDAS (he said I had it).  He said it was because the collagen fibres in the tissue were looser so antibodies could get further in.  But then a book I read about mould sensitivtyu (one of Dr Shoemaker's, can' t remember title) claimed that EDS was often a SYMPTOM of mould senicstiy and cleared up if that was cured.  IssSo I donm't know, but more than one person seems to have noticed the correlation.

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