Stomach aches can be caused by pandas

[dcmom]

Don't know if it is a physical, ocd, or anxiety thing. My dd had daily stomach aches post strep for 9 mos. We did gi testing- came up with nothing. The stomach aches went away once we did full dose zithromax (counter intuitive right?)

 

I wish I had seen this in black and white when we were pursuing only the GI route- waste of time...

[MomWithOCDSon]

Don't know if it is a physical, ocd, or anxiety thing. My dd had daily stomach aches post strep for 9 mos. We did gi testing- came up with nothing. The stomach aches went away once we did full dose zithromax (counter intuitive right?)

 

I wish I had seen this in black and white when we were pursuing only the GI route- waste of time...

Couldn't agree more! For our DS, I think the tummy trouble began with anxiety, but then the OCD grabbed hold of it and turned it into an obsession that he had trouble shaking until abx.

[simplygina]

Don't know if it is a physical, ocd, or anxiety thing. My dd had daily stomach aches post strep for 9 mos. We did gi testing- came up with nothing. The stomach aches went away once we did full dose zithromax (counter intuitive right?)

 

I wish I had seen this in black and white when we were pursuing only the GI route- waste of time...

 

I spent all last year asking about stomach aches. From what I figured out, lots of PANDAS kids seem to have migraine type things going on. We finally decided my son had abdominal migraines. Once he started taking magnesium supplements they decreased in frequency and severity. He will still get them (just not as severe) if he gets dehydrated, too hungry, or spends too much time in front of a movie or TV screen, especially if it is a fast action movie and he sits too close. If I catch it quick a dose of ibuprofen will do the trick. If not, I usually give him a dose of magnesium, ibuprofen and he takes an epsom salt bath with lavendar, rosemary and peppermint essential oils. Usually that will solve it and we can stop it from getting to the point where he throws up. He used to get them almost weekly, now it is more like one every other month.

 

I had no idea this was linked to PANDAS either until I started reading past posts and soooo many people talk about it. I think the official name is Cyclical Vomiting and once I googled it I knew that I had found what he has.

[dcmom]

My dd did not have cyclical vomiting. She had daily (sometimes 3x day) stomach aches- but no other physical symptoms (throwing up, constipation, etc). For her, we think it might have been somewhat sensory/ anxiety with a dose of ocd. They are completely gone (fingers crossed) for now.

[Allison]

This all makes sense. My dd16 has had terrible and mysterious tummy aches for years. Now we see it as a Pandas symptom (actually she's more PITAND.)

 

I just had a big "Aha" and "connect the dots" moment last week when I read about how we have brain cells in our stomachs. I have known for years about our enteric nervous system that goes from mouth to anus.

 

Never thought that the same antibodies attacking neurons in brain could also attack neurons in GI tract.

 

Would be interesting to see map corresponding nerves in stomach with same nerves in brain. Bet you dollars to donuts that it's smae as hippocampus or basal ganglia.

 

A

[sf_mom]

I believe it is totally physical.... BUT, I've always got strong opinions. Its one of two things... toxin's being thrown off due bacteria or actual strep in the gut. We too suffered greatly from daily stomach complaints that have ceased.

 

Was it IVIG, was it Bentonite Clay or high dose probiotics? Well, the stomach complaints didn't stop until we did high dose probiotics with the bentonite clay.

 

 

 

 

 

 

Don't know if it is a physical, ocd, or anxiety thing. My dd had daily stomach aches post strep for 9 mos. We did gi testing- came up with nothing. The stomach aches went away once we did full dose zithromax (counter intuitive right?)

 

I wish I had seen this in black and white when we were pursuing only the GI route- waste of time...

[Megs_Mom]

Our daughter had stomach ache, feeling of nausea, bad taste, metal/acid/throw-up taste in her mouth.

 

She ended up having an endoscope, and they found 8 ulcers. Ulcers can be serious, and are normally caused by H. Pylori - but she tested negative for this. Clearly, this inflamation/overage of acid is caused by whatever is causing the rest of her issues. We always have increase in breakthrough acid/taste in mouth even in a minor blip. Through therapy, she no longer freaks out about this, but she always tells me when it is happening. She is on Prevacid daily - we had hoped to go off this month, but with ear infection, acid is breaking through, so we'll wait until after ENT appt in another week.

[Iowadawn]

Chiming in here w/o thoroughly reading all the posts, so forgive me if missed something. Read Dr. K's website re adolescent/adult variant of PANDAS. The stomach stuff all goes with this. My dd15 was dx'ed in Dec with this. Her stomach stuff manifested with what would appear as overactive stomach, stomach ached badly at times. Then she got to where she was afraid she would throwup in public (never did). Had other anxiety issues. AntiDNase B was 5400 in Dec. All is indicative of PANDAS at this age. A month of high dose Augmentin pretty much took care of the symptoms. Unfortunately, she has started having symptoms again. Augmentin again, for now, per Dr. K. Just chiming in. Dawn

[Dr_Rosario_Trifiletti]

We have recently found almost all children with PANDAS-like illnesses harbor anti-flagellin (p41 on Lyme Western blots) antibodies, indicating chronic infection with flagellated bacteria. This association is very strong, much higher than the association with either strep or mycoplasma. This could, in fact, be the infection that sets the stage for trouble, even before strep arrives on the scene.

 

There are many gut active bacteria - including Helicobacter, Campylobacter, etc - that are flagellated.

 

This is a natural explanation for association of PANDAS with a chronic GI infections - the question is which one(s)? This is a fruitful area for clinical exploration.

 

Did anyone have a more specific diagnosis of their gut issues - i.e. actual organisms cultured.

 

Dr. T

[momto2pandas]

If you get desperate for data on this, I had both Lyme Western Blot and fecal cultures done 15 years ago or so at pretty much the same time. This was when I had the drug-induced lupus episode but before figuring that out, they looked for everything else, and I was having real gut issues back then. I don't recall the specific results. This was not long after I came back from years of field work in the third world and there was all manner of lovely stuff in my gut during that span but I don't remember what may have been left at that particular culture. Not sure anyone keeps medical records that long but one could always check.

 

We have recently found almost all children with PANDAS-like illnesses harbor anti-flagellin (p41 on Lyme Western blots) antibodies, indicating chronic infection with flagellated bacteria. This association is very strong, much higher than the association with either strep or mycoplasma. This could, in fact, be the infection that sets the stage for trouble, even before strep arrives on the scene.

 

There are many gut active bacteria - including Helicobacter, Campylobacter, etc - that are flagellated.

 

This is a natural explanation for association of PANDAS with a chronic GI infections - the question is which one(s)? This is a fruitful area for clinical exploration.

 

Did anyone have a more specific diagnosis of their gut issues - i.e. actual organisms cultured.

 

Dr. T

[momto2pandas]

p.s. My kids are both looking to be chronically infected with something (pan-lymphocytosis in the context of immune deficiencies and after 8-10 rounds of antibiotics) but are coming up negative for both ASO and myco P. PANDAS is not acting up too badly considering that they're always sick, but is this p41 something we should check? One has very bad constipation issues (enough to have been hospitalized briefly with impaction and fever - this was a couple of years ago, though); the other has diarrhea episodically. Neither complains of pain or urgency or has anything that looks like IBS to me.

 

What is the treatment for these chronic GI infections?

 

 

We have recently found almost all children with PANDAS-like illnesses harbor anti-flagellin (p41 on Lyme Western blots) antibodies, indicating chronic infection with flagellated bacteria. This association is very strong, much higher than the association with either strep or mycoplasma. This could, in fact, be the infection that sets the stage for trouble, even before strep arrives on the scene.

 

There are many gut active bacteria - including Helicobacter, Campylobacter, etc - that are flagellated.

 

This is a natural explanation for association of PANDAS with a chronic GI infections - the question is which one(s)? This is a fruitful area for clinical exploration.

 

Did anyone have a more specific diagnosis of their gut issues - i.e. actual organisms cultured.

 

Dr. T

[momto2pandas]

Just remembered that my older son and I had Salmonella right after his first birthday. We were sick for 3 weeks! That's flagellated, isn't it? I remember this because I had a bad reactive arthritis and my doctor thought I might have had Reiter's Syndrome. Turned out not to be (don't recall exactly how it was ruled out). Don't think we ever got my son cultured but we had been eating the same cake batter when it started. His constipation issues started probably about a year after that.

 

We have recently found almost all children with PANDAS-like illnesses harbor anti-flagellin (p41 on Lyme Western blots) antibodies, indicating chronic infection with flagellated bacteria. This association is very strong, much higher than the association with either strep or mycoplasma. This could, in fact, be the infection that sets the stage for trouble, even before strep arrives on the scene.

 

There are many gut active bacteria - including Helicobacter, Campylobacter, etc - that are flagellated.

 

This is a natural explanation for association of PANDAS with a chronic GI infections - the question is which one(s)? This is a fruitful area for clinical exploration.

 

Did anyone have a more specific diagnosis of their gut issues - i.e. actual organisms cultured.

 

Dr. T

[Dr_Rosario_Trifiletti]

Don't know if it is a physical, ocd, or anxiety thing. My dd had daily stomach aches post strep for 9 mos. We did gi testing- came up with nothing. The stomach aches went away once we did full dose zithromax (counter intuitive right?)

 

I wish I had seen this in black and white when we were pursuing only the GI route- waste of time...

 

I spent all last year asking about stomach aches. From what I figured out, lots of PANDAS kids seem to have migraine type things going on. We finally decided my son had abdominal migraines. Once he started taking magnesium supplements they decreased in frequency and severity. He will still get them (just not as severe) if he gets dehydrated, too hungry, or spends too much time in front of a movie or TV screen, especially if it is a fast action movie and he sits too close. If I catch it quick a dose of ibuprofen will do the trick. If not, I usually give him a dose of magnesium, ibuprofen and he takes an epsom salt bath with lavendar, rosemary and peppermint essential oils. Usually that will solve it and we can stop it from getting to the point where he throws up. He used to get them almost weekly, now it is more like one every other month.

 

I had no idea this was linked to PANDAS either until I started reading past posts and soooo many people talk about it. I think the official name is Cyclical Vomiting and once I googled it I knew that I had found what he has.

 

I have a number of cases of PANDAS presenting exclusively (at least initially) as cyclic vomiting. Gotta write them up!

 

Dr. T

[dcmom]

Yes- Iowa Dawn- My nine year old initially manifested exactly as Dr K's adolescent variant. Nine months later, post H1N1, a more classical pandas hit

[Suzan]

Could you please provide me the link to this Dr. K's adult PANDAS web site please???

 

Thanks,

 

Nancy

 

Is this the one? Scroll down to Possible Adolescent-Adult Variation of PANDAS is under review!

 

http://www.webpediatrics.com/pandasclinicalcases.html