PANS - oddball symptoms

[Garden]

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!

[NYCMom]

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.

[bws1565]

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)

[MountainMom]

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.... 

[Garden]

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.

[JSL25]

My daughter’s two chief complaints, and the VERY first symptoms of this disease, were leg pain and stomach pain. 

[sf_mom]

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 January 30, 2019 by sf_mom

[Wombat140]

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.

[TSH_73]

I have PANDAS and rheumatic fever, and when I first got rheumatic fever one of the early symptoms was joint and knee pain and I think general leg pain (I don't quite remember because it was a long time ago). And rheumatic fever is very similar to PANDAS, basically the same thing / on the same spectrum of autoimmune encephalitis from strep.

[Wombat140]

Encephalitis means specifically inflammation of the brain, not other parts of the body.  But you're right - it's pretty much the same condition, Streptococcus pyogenes infection followed by the immune system attacking particular parts of the patient's own body after mistaking them for more streptococcus germs.  (Just to confuse the issue, there's already a sub-category of rheumatic fever for effects in the brain, Sydenham's chorea aka St. Vitus's dance, but it's a different part of the brain producing different distinctive symptoms.  Perhaps one day PANDAS will get reclassified as a subgroup of rheumatic fever too.)  So it seems possible that what's going on there is an inflammation in one of the rheumatic fever places as well as the PANDAS place, and it's suggestive that you've had both conditions.  (My grandmother had rheumatic fever, too.)  I suppose it'd be for a doctor to say whether Garden's daughters' symptoms really are the same as the joint pains in rheumatic fever.

[HopeinHIM]

This is a while out so not sure if you will read  Yes to all.  My sons stomach ached all the time and he complained of leg pain and at times couldn't walk out of no where.  He is also double jointed 

[wisdom_seeker]

From the NIH website on Ehlers Danlos Syndrome:
   

Quote

https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome

Ehlers-Danlos syndrome is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications.

There are lots of genetic mutations (known and unknown) that result in connective tissue issues, so whether a kid gets the Dx depends on whether it's on the doctors' radars, and how severe the symptoms -- and the severity will depend on the kid's genetic mutation(s) and the child's activities --like gymnastics, soccer, or simply showing-off double-jointedness).

My son with PANS also has hEDS, and probably I do as well. EDS is supposed to be quite rare, with a 1:5,000-10,000 incidence, but it's suspiciously common among PANS patients. The Stanford PANS clinic says it's not uncommon in their clientele.

 I subscribe to the theory that EDS likely weakens gut integrity as well as blood-brain-barrier integrity, so perhaps antibodies to strep or mycotoxin fragments may more easily get into the brain.  And bacterial overgrowth or the disruption to the gut microbiome (from inflammatory food and antibiotics) may be enough to let food and bacterial fragments in to get tagged as invaders and create an inflammatory state which ... always weakens blood-brain integrity.

As far as stomach pain, apparently it's very common in PANS. DS19 developed one variant called mast cell activation in his stomach and gut, making him go from hungry to bloated within a few bites.  Not good for a teen boy. Fortunately he's gaining weight again.

Edited April 15, 2019 by wisdom_seeker
Added link to the #s for incidence.