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

[NancyD]

GREAT feedback, Momto2pandas...thank you. I was hoping you would respond. I've seen some of your previous posts and know you have knowledge of these types of anti-inflammatories. Although DD14 has had chronic PANDAS over the years and often reacts to any kind of viral or bacterial infection (not just strep), she has been so much better since doing IVIG (almost 2 years now). Before starting the infusions her IGG levels were low but they are now on the high side. I don't know if I would still consider her condition "chronic" since doing IVIG. Her first remission lasted one year and she is 6 weeks into her second remission (or as close to remission as she has ever come). She still has anxiety and OCD comes and goes. Tics, rages, mood dysregulation, impulsivity, hyperactivity, and sleep problems are 100% gone.

 

We do plan to do plasmapheresis as soon as Dr. L comes back and I would like to do another infusion 28 days after that. Question is...if after she is scoped our GI specialist recommends remicade do we start right away or wait until after the pheresis and IVIG? Of course, both GI specialist and Dr. L will be involved in this decision if they think we should proceed with remicade but would love to know your thoughts.

 

Nancy

 

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

[momto2pandas]

Between PEX, IVIG, and Remicade, I think you have redundancy; if she no longer has an immune deficiency or problematic infections, you would mostly be looking for the antiinflammatory effect of IVIG, and getting rid of the "bad" antibodies. PEX would get rid of the bad antibodies anyway, and Remicade would be probably a better antiinflammatory than would IVIG. If IVIG has not helped her gut issues, it seems to me that PEX followed by Remicade would make sense. I don't think you'd want to do the Remicade first, because it could be removed by PEX. Depends on how long before you do the PEX, I guess. If that's quite a ways out anyway, you'd could be getting ready for your next dose of Remicade by then in any case.

 

 

 

 

GREAT feedback, Momto2pandas...thank you. I was hoping you would respond. I've seen some of your previous posts and know you have knowledge of these types of anti-inflammatories. Although DD14 has had chronic PANDAS over the years and often reacts to any kind of viral or bacterial infection (not just strep), she has been so much better since doing IVIG (almost 2 years now). Before starting the infusions her IGG levels were low but they are now on the high side. I don't know if I would still consider her condition "chronic" since doing IVIG. Her first remission lasted one year and she is 6 weeks into her second remission (or as close to remission as she has ever come). She still has anxiety and OCD comes and goes. Tics, rages, mood dysregulation, impulsivity, hyperactivity, and sleep problems are 100% gone.

 

We do plan to do plasmapheresis as soon as Dr. L comes back and I would like to do another infusion 28 days after that. Question is...if after she is scoped our GI specialist recommends remicade do we start right away or wait until after the pheresis and IVIG? Of course, both GI specialist and Dr. L will be involved in this decision if they think we should proceed with remicade but would love to know your thoughts.

 

Nancy

 

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

[EmersonAilidh]

Meg's Mom - Glad to hear your daughter's doing well! Did she end up having Celiac's Disease or just a general abdominal problem? Sorry she's had to go through this. <3

 

Worried Dad - How would I go about getting tested? I had an upper GI about four years ago but that was mostly looking for complications they thought had arisen from an emergency appendectomy about seven years ago (none were find. Although they did find out my metabolism is four times quicker than usual. Yipee! ). Besides that I've never done any other intestinal/abdominal testing & wouldn't even really know how to go about it.

[dut]

Sorry, in a rush today but just wanted to throw the possibilty of autoimmune pancreatitis into the mix.. symptoms can easily be mistaken (IMO) for GERD. I've been wondering if we have been dealing with the pain of this in exacerbations and consequently dealing with the fallout of low digetsive enzymes at all other times.

[momto2pandas]

Interesting you should mention this because two of my cousins who also had what looked like PANDAS as kids have had pancreatitis.

 

 

Sorry, in a rush today but just wanted to throw the possibilty of autoimmune pancreatitis into the mix.. symptoms can easily be mistaken (IMO) for GERD. I've been wondering if we have been dealing with the pain of this in exacerbations and consequently dealing with the fallout of low digetsive enzymes at all other times.

[NancyD]

I see your point, Momto2Pandas. Since it would be plasmapheresis and not PEX I was thinking we would need to replace the antibodies and then use the remicade to eliminate the inflammation in the gut that may be making her more susceptible to further infection. I'll see what Ds. Buie and Latimer recommend. The colonoscopy/endoscopy is next week and our telephone consult with Dr. L is August 4 (hopefully!).

 

Nancy

 

Between PEX, IVIG, and Remicade, I think you have redundancy; if she no longer has an immune deficiency or problematic infections, you would mostly be looking for the antiinflammatory effect of IVIG, and getting rid of the "bad" antibodies. PEX would get rid of the bad antibodies anyway, and Remicade would be probably a better antiinflammatory than would IVIG. If IVIG has not helped her gut issues, it seems to me that PEX followed by Remicade would make sense. I don't think you'd want to do the Remicade first, because it could be removed by PEX. Depends on how long before you do the PEX, I guess. If that's quite a ways out anyway, you'd could be getting ready for your next dose of Remicade by then in any case.

[momto2pandas]

Ah, ok. I see what you're saying - yes, if you are removing immunoglobulins and not replacing them, you would want to replace them before doing Remicade for sure.

 

It's also possible that with the Remicade you could do without the pheresis - Remicade should tighten up the BBB. After all, Remicade is used to treat autoimmune disease all the time without phereisis. If her Ig's are good, you might even just do Remicade and neither of the others and see how that goes.

 

Obviously big caveat - I am not an MD so obviously go with their advice over mine!

 

 

I see your point, Momto2Pandas. Since it would be plasmapheresis and not PEX I was thinking we would need to replace the antibodies and then use the remicade to eliminate the inflammation in the gut that may be making her more susceptible to further infection. I'll see what Ds. Buie and Latimer recommend. The colonoscopy/endoscopy is next week and our telephone consult with Dr. L is August 4 (hopefully!).

 

Nancy

 

Between PEX, IVIG, and Remicade, I think you have redundancy; if she no longer has an immune deficiency or problematic infections, you would mostly be looking for the antiinflammatory effect of IVIG, and getting rid of the "bad" antibodies. PEX would get rid of the bad antibodies anyway, and Remicade would be probably a better antiinflammatory than would IVIG. If IVIG has not helped her gut issues, it seems to me that PEX followed by Remicade would make sense. I don't think you'd want to do the Remicade first, because it could be removed by PEX. Depends on how long before you do the PEX, I guess. If that's quite a ways out anyway, you'd could be getting ready for your next dose of Remicade by then in any case.

[Fixit]

GREAT feedback, Momto2pandas...thank you. I was hoping you would respond. I've seen some of your previous posts and know you have knowledge of these types of anti-inflammatories. Although DD14 has had chronic PANDAS over the years and often reacts to any kind of viral or bacterial infection (not just strep), she has been so much better since doing IVIG (almost 2 years now). Before starting the infusions her IGG levels were low but they are now on the high side. I don't know if I would still consider her condition "chronic" since doing IVIG. Her first remission lasted one year and she is 6 weeks into her second remission (or as close to remission as she has ever come). She still has anxiety and OCD comes and goes. Tics, rages, mood dysregulation, impulsivity, hyperactivity, and sleep problems are 100% gone.

 

We do plan to do plasmapheresis as soon as Dr. L comes back and I would like to do another infusion 28 days after that. Question is...if after she is scoped our GI specialist recommends remicade do we start right away or wait until after the pheresis and IVIG? Of course, both GI specialist and Dr. L will be involved in this decision if they think we should proceed with remicade but would love to know your thoughts.

 

Nancy

 

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

 

this is interesting..my sons condition stems from my husbands side...dh still gets strep and has some mild tics..and still has above normal antidnase?????.

my dh brother has very bad psorsis and i believe he is on remicade .....i will ask

but i am sure you are aware of the side effects....

how did you come to think about using remicade??

this link

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000267

is very indepth...

cautions pretty much everything....vitamins, vaccinnes

dental surgery......

i keep hinting at him getting checked for strep and other alternative..

[NancyD]

Yes, some potential serious side effects with remicade. But there is with everything else we have tried (including anti-psychotics). Have to weigh pros and cons for every treatment carefully. Sometimes it boils down to quality of life. They've been using remicade with success for chrohns and other autoimmune disorders. Our GI specialist brought it up recently. Definite correlation between GI and immune systems. We have tried everything and sometimes you just need to bring in the big guns. DD has been battling severe PANDAS for over 12 years -- her rages were quite violent and I was beginning to fear for our lives. Too much dopamine flooding her brain. I won't give up until we can find the underlying cause...

 

this is interesting..my sons condition stems from my husbands side...dh still gets strep and has some mild tics..and still has above normal antidnase?????.

my dh brother has very bad psorsis and i believe he is on remicade .....i will ask

but i am sure you are aware of the side effects....

how did you come to think about using remicade??

this link

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000267

is very indepth...

cautions pretty much everything....vitamins, vaccinnes

dental surgery......

i keep hinting at him getting checked for strep and other alternative..

[NancyD]

Ah, ok. I see what you're saying - yes, if you are removing immunoglobulins and not replacing them, you would want to replace them before doing Remicade for sure.

 

It's also possible that with the Remicade you could do without the pheresis - Remicade should tighten up the BBB. After all, Remicade is used to treat autoimmune disease all the time without phereisis. If her Ig's are good, you might even just do Remicade and neither of the others and see how that goes.

 

Obviously big caveat - I am not an MD so obviously go with their advice over mine!

 

That may be the way to go then if insurance does not approve plasmapheresis. Either way I will wait to speak with both Drs. Buie and Latimer. Thanks Momto2Pandas...I will let you know which way we go.

 

Nancy

[EmersonAilidh]

Dut- Never heard of autoimmune pancreatitis or GERD before! No jaundice or vomiting problems over here so that doesn't sound very fitting personally, but I hope your kiddo's doing well!

 

Best wishes to all of you!!!

 

Also. Just throwing this out there. I do know how to spell Crohn's. I'm not too entirely sure why I put "Chron's" so much. Sorry. :/

[dut]

Momto2 - for your cousins, it may be worth exploring the autoimmune pancreatitis angle because unlike normal acute or chronic pancreatitis which (if my uinderstanding is correct) can't be treated with much, the autoimmune sort responds well to corticosteroids. Peglem set me off on this with anarticle about a.pancreatitis and elevated IgG4 wich our dd has.

 

 

this article is quite good

 

http://www.joplink.net/prev/200411/200411_news.pdf

[Worried_Dad]

Crohn's isn't easy to diagnose, unfortunately, or wasn't when I first got sick (about 20 years ago). I ended up at Mayo Clinic in MN after a year with no diagnosis locally. Mayo based the diagnosis on clinical history and the results of a colonoscopy, where they checked for the telltale presence of intestinal lesions. Not fun... but it was a huge relief to finally know what I was dealing with!

 

 

Worried Dad - How would I go about getting tested? I had an upper GI about four years ago but that was mostly looking for complications they thought had arisen from an emergency appendectomy about seven years ago (none were find. Although they did find out my metabolism is four times quicker than usual. Yipee! ). Besides that I've never done any other intestinal/abdominal testing & wouldn't even really know how to go about it.

[sf_mom]

Did they ever treat you with antibiotics and have the antibiotics you are taking now helped with Crohn's?

 

-Wendy

 

Crohn's isn't easy to diagnose, unfortunately, or wasn't when I first got sick (about 20 years ago). I ended up at Mayo Clinic in MN after a year with no diagnosis locally. Mayo based the diagnosis on clinical history and the results of a colonoscopy, where they checked for the telltale presence of intestinal lesions. Not fun... but it was a huge relief to finally know what I was dealing with!

 

 

Worried Dad - How would I go about getting tested? I had an upper GI about four years ago but that was mostly looking for complications they thought had arisen from an emergency appendectomy about seven years ago (none were find. Although they did find out my metabolism is four times quicker than usual. Yipee! ). Besides that I've never done any other intestinal/abdominal testing & wouldn't even really know how to go about it.

[KeithandElizabeth]

Here is one article connecting infectious agents to Crohn's disease. The article mentioned that 40% of patients with Chron's disease had elevated streptococcal antigens.

 

http://www.gastrojournal.org/article/0016-...0687-8/abstract

 

Elizabeth