Chron's & P.A.N.D.A.S.

[EmersonAilidh]

Is it common to see multiple autoimmune dysfunctions in one person?? I've been doing a lot of research regarding the "nonspecific abdominal" pain so frequently seen in P.A.N.D.A.S. patients that I myself have dealt with for years. One of the things that I looked at was Chron's Disease. I think that it resonated with me mostly just because it was another autoimmune disease, but the vast majority of my symptoms could be explained by it. It got me thinking.

Chron's (Anti-Saccharomyces cerevisiae antibodies) & P.A.N.D.A.S. (GABHs) are chalked up to two different antibodies, which (from what I understand) respond to yeast (Chron's) & strep (P.A.N.D.A.S.). Is it at all possible (or maybe even likely) that two antibodies could be functioning improperly?? Obviously I'm no doctor so I don't understand completely, but from what I can tell antibodies are produced in B cells/lymph nodes. Could getting frequent, severe strep impact the way that those lymph nodes produced antibodies at all or is that something that starts at birth??

[momto2pandas]

It is probably the rule, more than the exception, to see multiple autoimmune conditions in one person. They need not all be infection triggered, but many of them can be.

 

There is a very interesting case study about treatment for Crohn's resulting in complete remission of OCD, in fact.

[Fixit]

Is it common to see multiple autoimmune dysfunctions in one person?? I've been doing a lot of research regarding the "nonspecific abdominal" pain so frequently seen in P.A.N.D.A.S. patients that I myself have dealt with for years. One of the things that I looked at was Chron's Disease. I think that it resonated with me mostly just because it was another autoimmune disease, but the vast majority of my symptoms could be explained by it. It got me thinking.

Chron's (Anti-Saccharomyces cerevisiae antibodies) & P.A.N.D.A.S. (GABHs) are chalked up to two different antibodies, which (from what I understand) respond to yeast (Chron's) & strep (P.A.N.D.A.S.). Is it at all possible (or maybe even likely) that two antibodies could be functioning improperly?? Obviously I'm no doctor so I don't understand completely, but from what I can tell antibodies are produced in B cells/lymph nodes. Could getting frequent, severe strep impact the way that those lymph nodes produced antibodies at all or is that something that starts at birth??

 

can you come to my house and help me understand....or at least tutor me or my kids...

are you taking college prep courses....

i'm starting to agree with Phasmid....you are not 15!!! or 15 going on 35

stop talking more better than me!!!

[tpotter]

I would ask Dr. K. about this. In fact, I am going to be asking him exactly that next week when I bring my son there for IVIG. Interesting that you are bringing this up today, because we just went to our pediatrician, who we asked about putting my son on Nystatin for yeast (he's bloated, and also gets the non-specific stomach pain and nausea.) She called Dr. K, because she didn't feel comfortable making that decision herself, and he said NOT to put him on the Nystatin (keep taking the sacchromyces boulardi that he had said to take...but that we are no longer seeing evidence of working), and he would talk with us about it next week. I'll let you know what he says, but since you also have an upcoming appointment, I would suggest that you make a list of all the questions you want to ask him.

[Fixit]

I would ask Dr. K. about this. In fact, I am going to be asking him exactly that next week when I bring my son there for IVIG. Interesting that you are bringing this up today, because we just went to our pediatrician, who we asked about putting my son on Nystatin for yeast (he's bloated, and also gets the non-specific stomach pain and nausea.) She called Dr. K, because she didn't feel comfortable making that decision herself, and he said NOT to put him on the Nystatin (keep taking the sacchromyces boulardi that he had said to take...but that we are no longer seeing evidence of working), and he would talk with us about it next week. I'll let you know what he says, but since you also have an upcoming appointment, I would suggest that you make a list of all the questions you want to ask him.

 

Please do come back with info he may give you on this....

i believe it has been a real problem for us since february...when the vocals started...

2 times when the screeches came they stopped on vanco and diflucan day 12....both times...the first time i got rid of them completely..this time i think i have lingering stuff...

we still have some rasberries.. and popcorn and sneeze sounds....but not as bad or as frequent....

[melanie]

why no nystatin????

[EmersonAilidh]

Momto2pandas - Do you have a link or any way of finding that study?? I'm interested!

 

Fixit- Haha, thank you! I really do wish that I could do something to help kids with P.A.N.D.A.S. understand what's happening to them better though. Lord knows I respond better when I'm talking to someone who understands as opposed to just another doctor. & yes, I am! I start dual enrollment at the local community college the year after this upcoming one, actually. So excited for that! I stress myself sick to strive in school. I finished my freshman year with a perfect 4.00000 in all advanced classes. Grades are a HUGE anxiety factor to me..

Also, what is a popcorn sound??

 

Tpotter - My main intention is seeing him is just to ask where to go from here, but I'll be sure to add this to my little list of questions! Let me know what he says when you talk to him though! I have a huge bloating problem & have responded extremely well to my new gluten-free diet. I have almost no symptoms of Celiac's Disease or Ulcerative Colitis though, which is what led me to look at Chron's. The Chron's symptoms that stuck out most to me were the eye problems, consistent diarrhea, & fatigue. I haven't been to any intestinal doctors in about four years, so I hope to see one soon.

[momto2pandas]

http://psy.psychiatryonline.org/cgi/content/full/50/4/425

 

I can explain it more if you like. When the child's Crohns stopped responding to infliximab, presumably because of neutralizing antibodies, he soon after also had a flare of OCD -- as the adalimumab started working, the OCD also got back under control. They interpreted it differently in this report, but I've worked with these drugs for a while and this was my interpretation... I could be wrong.

[EmersonAilidh]

First thing I noticed was them asking him about the GABHs! Glad that P.A.N.D.A.S. was mentioned.

& that is really interesting! Lots of P.A.N.D.A.S. kids seem to have problems with candida, IBS, & other stomach problems, but I think that abdominal pain caused by more defunct antibodies would be totally logical (not to discredit their diagnoses, but to maybe help shed some light on the unexplained "nonspecific abdominal pain" so many of us deal with).

[Megs_Mom]

First thing I noticed was them asking him about the GABHs! Glad that P.A.N.D.A.S. was mentioned.

& that is really interesting! Lots of P.A.N.D.A.S. kids seem to have problems with candida, IBS, & other stomach problems, but I think that abdominal pain caused by more defunct antibodies would be totally logical (not to discredit their diagnoses, but to maybe help shed some light on the unexplained "nonspecific abdominal pain" so many of us deal with).

 

Hi - our daughter began to complain of stomach pain and "metal taste" (acid) in her mouth right when she started with PANDAS symptoms. In addition to the pain, it also changed the "taste of food" and made her think she was about to throw up all the time. At first, everyone thought it was just anxiety, but after a lot of work, we were able to determine that she really had stomach pain that was adding to her anxiety, not caused by anxiety. It was bad enough that we wanted to check her for celiac, and did an endoscope. They found multiple ulcers - and no sign of h pylori. We were shocked as before PANDAS, she was the last kid to ever complain about a stomach ache. It was severe and constant enough that we use Prevacid - and of course if there was another bacteria causing the ulcers, we're treating that with the abx that we use for PANDAS. Because of the severity of the ulcers, we use Motrin as rarely as possible, but during a minor blip, she does get a lot of relief from Motrin, so we just balance it out and only use when really needed. Some of the charcoal conversations here have been great, and I've saved to my file. I'm not really ready yet (will I ever be!) to change her treatment plan, but will consider switching to this when we wean off the Prevacid.

 

I remain really interested in this connection between so many kids and stomach pain. There may be a number of causes, and it is not realistic for everyone to have an endoscope, but I share this in case other suspect a similar situation. Since Meg's stomach issues were so sudden and so intense, and her celiac was quite odd, we felt that we had to do an endoscope to figure it out. My suspicion is that whatever caused her PANDAS/PITAND also caused her stomach ulcers. I wonder if the combination is what allowed the breach in the BBB or change in the immune system.

[Chemar]

I havent read everything so forgive me if I have misundersood the first post, but my son has Crohn's, and altho yes, candida can cause flares, it is NOT IMHO the only microbe associated with Crohn's

 

recent reading I have done seems to indicate there may even be a viral component. I have seen both rotovirus and epstein barr mentioned, as well as mycoplasma and others. So I think it is likely more complex than just a candida effect.

 

also, Crohn's flares have not always cause a rise in OCD behavior for my son, nor a rise in tics, so we do not see a clear correlation there, which is not to say that Crohn's flares dont trigger tics and OCD, just that it doe not always follow

 

my son controls his Crohn's primarily thru diet and supplements and is on no medications for it

 

he has a Tourette/OCD dx with the Crohn's, but not a PANDAS one

 

ps I just bumped up a research post I made http://www.latitudes.org/forums/index.php?showtopic=8779

[NancyD]

DD14 started with GI problems at 4 weeks. She was diagnosed with ASD at 2 years. First PANDAS episode can be traced back to 2.9 years with overnight onset of symptoms though I suspect she had strep before that. Colonoscopy/endoscopy at age 5 showed severe colitis. Our GI specialist thinks GI problems may have led to PANDAS. No longer on autism spectrum but she has severe PANDAS (in remission this time for only 1 month). We're going to scope again next week...almost 10 years later. Although we cleared up colitis with monthly glutathione IVs (she was GFCF for years and we have done chelation, anti-fungals, and supplements over the years but I am sure it was the glutathione IVs that cleared up the colitis), I'm sure we will find serious inflammation in gut after 7 years on antibiotics! GI specialist said he is seeing good results with Remicade. Anyone have experience with this anti-inflammatory?

 

Nancy

[Fixit]

Also, what is a popcorn sound??

 

the sound you make when you try to get that clear shell from popcorn, that cups the wrong way, out of the back of your throat..

[momto2pandas]

If you do Remicade, PLEASE let me know your results. Remicade is a TNF-alpha inhibitor. I've worked a lot on such drugs in my profession, but not on Remicade per se. My prediction is that Remicade and related drugs should cause dramatic improvements in "PANDAS" but, though there is literature on these drugs helping depression, anxiety disorders, etc. in people with inflammatory disorders, and there is that OCD case report that I posted earlier here and my interpretation of it, so far I don't know specifically of people with PANDAS getting these drugs.

 

One caution - it must be used with great caution in people with choric/recurrent infections, and though it's not routine, I would also make sure that she is not immunodeficient before giving it, given that many kids with PANDAS do seem to have poor immunity and this could in principle increase the risks associated with treatment. But if it were my kids and all of that stuff looked good, and they were still experiencing bad inflammatory symptoms of any type, I personally would give it a try. I have seen lives changed so amazingly with these drugs; they are like miracles for the right set of patients.

 

Even if such drugs are effective against PANDAS, I think they would not be often used given that many and maybe even most PANDAS kids do have underlying/recurrent infections and poor immunity. But I do wonder about their use in severe cases where underlying infections cannot be detected and where the immune system seems to be healthy - especially if conditions such as Crohn's, psoriasis, etc. are also present.

 

 

DD14 started with GI problems at 4 weeks. She was diagnosed with ASD at 2 years. First PANDAS episode can be traced back to 2.9 years with overnight onset of symptoms though I suspect she had strep before that. Colonoscopy/endoscopy at age 5 showed severe colitis. Our GI specialist thinks GI problems may have led to PANDAS. No longer on autism spectrum but she has severe PANDAS (in remission this time for only 1 month). We're going to scope again next week...almost 10 years later. Although we cleared up colitis with monthly glutathione IVs (she was GFCF for years and we have done chelation, anti-fungals, and supplements over the years but I am sure it was the glutathione IVs that cleared up the colitis), I'm sure we will find serious inflammation in gut after 7 years on antibiotics! GI specialist said he is seeing good results with Remicade. Anyone have experience with this anti-inflammatory?

 

Nancy

[Worried_Dad]

Not surprising to see this in a family history of autoimmune disorders... but I myself happen to have Crohn's. Always figured this increased our son's vulnerability to PANDAS....