How much does inflammation play into PANDAS

[FallingApart]

Hello everyone,

 

I feel that we have been at this for so long that I have possibly lost sight of the most basic concept of PANDAS. How much of PANDAS is an inflammation problem? Am I corect in thinking that the whole issue with PANDAS is that is causes inflammation in the brain which then causes all the "stuff" that we as parents are seeing in our children?

 

I'm not trying to minimize what PANDAS is, but I am not sure I have been focusing enough on the actual inflammation part of this throughout all of this. I think I might need to go back to the basics here but I can't even remember what the basics are at this point....

[reactive]

Hello everyone,

 

I feel that we have been at this for so long that I have possibly lost sight of the most basic concept of PANDAS. How much of PANDAS is an inflammation problem? Am I corect in thinking that the whole issue with PANDAS is that is causes inflammation in the brain which then causes all the "stuff" that we as parents are seeing in our children?

 

I'm not trying to minimize what PANDAS is, but I am not sure I have been focusing enough on the actual inflammation part of this throughout all of this. I think I might need to go back to the basics here but I can't even remember what the basics are at this point....

I am fairly new here but I'll take a stab at it...I read on this forum as well as other sources that the theory is that strep triggers something to cause inflammation of the basal ganglia of the brain...and the basal gangia is the part of the brain assoc. with movement, emotion, ect so that is why you get OCD and TIC symtpoms...

[peglem]

from Buster's FAQ:

Q: Why does IVIG or Plasmapheresis work?

A: PANDAS is thought to be caused by three events:

 

1. the creation of an antibody to Group A Beta-Hemolytic Streptococcus that can react with neuronal tissue

2. the failure of the immune system to suppress the antibody

3. a breach of the blood-brain barrier so that a B-cell or the antibody can reach the neuronal tissue

 

IVIG is highly anti-inflammatory and can close #3. There are also reports that IVIG resets the T-regulatory cells addressing #2. Plasmapherisis works by removing the antibodies in #1. Antibiotics also help with #1 by slowing an infection so the immune system can kill the bacteria. Once the antigen (the bacteria) is removed, the antibodies generally disappear in ~4-6 weeks.

 

So, inflammation opens the BBB?

[FallingApart]

Ok, this is what I wanted to clarify for myself. Thank you. So, PANDAS is an inflammatory disease.

 

Has anyone here tried an ant inflammatory diet with your child? Dr. Wiel or Floyd Chilton? I am currently reading Inflammation Nation and am starting to think that I might be on to something here. This, along with Turmeric...This theory talks about reducing chronic inflammation in your body with certain foods. Has anyone else tried this?

[simplygina]

Ok, this is what I wanted to clarify for myself. Thank you. So, PANDAS is an inflammatory disease.

 

Has anyone here tried an ant inflammatory diet with your child? Dr. Wiel or Floyd Chilton? I am currently reading Inflammation Nation and am starting to think that I might be on to something here. This, along with Turmeric...This theory talks about reducing chronic inflammation in your body with certain foods. Has anyone else tried this?

 

I haven't tried a specific diet per se but inflammation is what I am focusing on most. We're still not sure my son has PANDAS because we haven't been able to document the relationship between strep and his symptoms starting and/or worsening, though he definitely had strep several times within the year his symptoms started and any illness, including strep makes it worse. While his dr. and I sort out what is going on, I figure inflammation seems to be the root of most illnesses and the things that make his symptoms worse, so it can't hurt to keep it low. And we all know that it all gets worse with stressors like illness, being tired, exposure to allergens and toxins etc. which all inflammation in the body. He's done really well I think and I credit most of that to keeping the inflammation low.

 

We've done our best to cut out dietary inflammatories like msg, aspartame, artificial dyes (esp. #40) and flavorings, exposure to pesticides and herbicides and too much sugar (especially high fructose corn syrup). We haven't cut out wheat or milk yet, but I'm toying with it. We eat more salmon than before and i try to make sure there are several fruits and vegetables at every meal. Of course he's a normal kid and eats crap sometimes and we definitely notice an increase in symptoms. I would love to afford to be able to eat entirely organic and natural, we do as much as we can with the things that I think are the most important.

 

We supplement with several things known to reduce inflammation. He takes fish oil for the essential fatty acids, vitamin c (ester-c), vitamin e (mixed tycopherols), chromium picolinate (he tends to be hympoglycemic), vitamin D3, melatonin (for sleep but it does have anti-inflammatory properties as well), magnesium, tumeric, & probiotics. i just bought some quercitin to add as well. He takes some other things as well but for other purposes. The one I notice an immediate effect with is magnesium. His tics are much worse if we forget.

 

I make sure he gets enough exercise, sleep, and we try to keep life pretty simple to avoid much stress. Even good stress increases his symptoms, so we try to keep it all in balance. He's definitely worse with tics and emotions when he's tired. Exercise seems to increase his tics for about an hour, but then reduces them a lot.

 

I clean with baking soda and vinegar mostly, along with essential oils. I have been using HEPA filters in our furnace this year and I have a vacuum with a HEPA filter as well. He's really sensitive to strong smells, especially perfume-y stuff. Exposure to things like gas and diesel fumes brings an instant increase. I've also notice an increase with smog. I change his bedding often.

 

I want to have him tested for food and environmental allergies as well so I know for sure what affects him.

 

The way I see it, at the center of all the things that make things worse for him, including illness, is inflammation. Basically anything I can connect to reducing inflammation I am open to. If it doesn't help the OCD and tics, which I'm certain it does, it helps with a whole lot of other health issues, so we can't lose. And since all these things affect the health of the whole family, I'm noticing all of our health improving.

[thereishope]

I have a question, once the inflammation goes down, is the child suppose to be "back to normal" or is there a span between inflammation going down and normalcy? I just keep going back to the thought of there being a bruise that needs to heal and that is also why timelines in recovery vary. I also think once the inflammation goes down, there's a lot of reprogramming that has to go on within the child's brain. Their thoughts were messed with so much. I can see how confusion over "what is normal?" might occur in their heads. That would explain why my child had residual OCD.

[FallingApart]

Gina,

 

Where did you get all your inflammation knowledge from? Did you get it from INflammation Nation as well or from Dr. Weil or somewhere else? Have you seen a nutriotionist/dietician or any other professional or did you do it all on your own? I'm thinking that by the time I do all the reading I might know as much as the professional who will never have heard of PANDAS. But any insight you have is greatly appreciated.

 

Thanks so much!

 

Does magnesium have anti inflammatory properties? I've always noticed it to have a great effect on DD but I don't know if it is touted for being anti inflammatory. I will need to look this up.

[dut]

A good book for this is "healing the new childhood epidemics" by Kenneth Bock. I'm halfway thru at the moment and really liking what I've read so far...

[Suzan]

Ok, this is what I wanted to clarify for myself. Thank you. So, PANDAS is an inflammatory disease.

 

Has anyone here tried an ant inflammatory diet with your child? Dr. Wiel or Floyd Chilton? I am currently reading Inflammation Nation and am starting to think that I might be on to something here. This, along with Turmeric...This theory talks about reducing chronic inflammation in your body with certain foods. Has anyone else tried this?

 

We are gluten free and since gluten causes inflammation, we noticed very great improvement when removing it from our diet. It was not a cure at this point but surely helps a lot. I don't know much else about the diets you mention, interesting to read up on.

 

susan

[simplygina]

Gina,

 

Where did you get all your inflammation knowledge from? Did you get it from INflammation Nation as well or from Dr. Weil or somewhere else? Have you seen a nutriotionist/dietician or any other professional or did you do it all on your own? I'm thinking that by the time I do all the reading I might know as much as the professional who will never have heard of PANDAS. But any insight you have is greatly appreciated.

 

Thanks so much!

 

Does magnesium have anti inflammatory properties? I've always noticed it to have a great effect on DD but I don't know if it is touted for being anti inflammatory. I will need to look this up.

 

I've always been fascinated by nutrition and have been ever so slowly working towards getting my master's in nutrition. Hoping to be a Registered Dietitian someday. So I guess one of my hobbies is reading and learning about nutrition. I'm a geek! I go to the library often and troll the nutrition aisle. I've had to write papers on specific nutrients and their effects as well as papers on specific conditions and how nutrients play a part. The last one a wrote was on Omega 3 fatty acids, so that really led me down the road of how inflammation is implicated in so many conditions.

 

I read Inflammation Nation about 6 months ago and thought it was really helpful.

Dr. Bock's book is my new favorite right now because it is so applicable to my life. I have ADD so there is a lot in there that has helped me!

 

Magnesium is related to so many processes on the body. When magnesium levels fall, C-reactive protein, a marker for inflammation, goes up.

 

Here's a link to an article that summarizing a study done that was published in The Journal of American College of Nutrition in 2003.

 

http://www.nutraingredients.com/Research/M...ce-inflammation

[momaine]

The only thing I can add to this conversation is that when my dd takes Advil or gets a prednisone burst, her symptoms reduce significantly. In my mind the ocd/tics are directly related to how much inflammation is in the basal ganglia at the time.

[Chemar]

linking two other recent threads on the subject of inflammation for those who may not have read them

 

http://www.latitudes.org/forums/index.php?showtopic=7072

 

http://www.latitudes.org/forums/index.php?showtopic=7075

 

although we dont think my son is PANDAS (tho may be PITAND, with genetic inherited Tourette Syndrome) he does have inflammation and autoimmmunity from Crohn's Disease and we can attest to the remarkable improvement from anti-inflamm diet and correct supplements. It has also helped with his overall health and so with the tics/OCD too

[Megs_Mom]

We have been focused on inflamation for a while now, for quite a few reasons. Our initial realization that she really had PANDAS was when she reduced her OCD by about 80% on the first day of Prednisone. It came back as soon as the Pred was done. She take Azith, which has been shown to be anti-inflamatory, and she still gets a minor flare if the Azith is reduced. Meg had consistently high ANA (an inflamatory marker) for 2 years that was finally reduced (although not yet normal) after 4 months of abx. I was really astonished that we were impacting the ANA levels.

 

I am not sure that I believe that the exact same combination of factors causes autoimmune neuropsychiatric disorder in each child - and therefore that the exact same remedy will work. But for us, we are believers in a strong inflamatory component, and have been taking careful steps to work with food & supplements to help reduce inflamation. While I do think that food & supplements can contribute to healing, in most cases, I think the inflamatory effect is much larger than this, and needs to be treated by IVIG or abx (is PEX anti-inflamatory???) while also taking a whole body approach.

[momaine]

linking two other recent threads on the subject of inflammation for those who may not have read them

 

http://www.latitudes.org/forums/index.php?showtopic=7072

 

http://www.latitudes.org/forums/index.php?showtopic=7075

 

although we dont think my son is PANDAS (tho may be PITAND, with genetic inherited Tourette Syndrome) he does have inflammation and autoimmmunity from Crohn's Disease and we can attest to the remarkable improvement from anti-inflamm diet and correct supplements. It has also helped with his overall health and so with the tics/OCD too

 

 

Has he ever been tested for Mycoplasma? Because I just read that Mycoplasma can sometimes cause Crohn's Disease. I have two nephews with Crohn's and my sil is now going to look into it. AS we talked she remembered that previous to one son's allergies starting out of the blue with Crohn's following shortly after, that he had a bad cough and when she took him to the doctor after listening to his chest they said he had cold induced asthma. He was never tested for MP. Maybe it was that after all and for him it went to his intestines instead of his brain? worth looking into, I would think. MP sounds like it can cause a range of autoimmune problems if left untreated.

Angela

[Chemar]

Hi

 

yes I posted on one of those threads i linked that some physicians feel mycoplasma may cause Crohn's

My son showed +ve Epstein Barr (no mono) but no specific mycoplasma testing yet (long story, he wont have blood draws related to the OCD) He has never had chest/respiratory probs tho and even very seldom has had colds, sore throats. No evidence of ever having strep

 

he doesnt just have the GIT effect from the Crohn's tho as he has had pretty serious "brain" effects from his TS(inherited from my husband) and OCD which were very severe when he was a child. so much so that I looked into PANDAS back in 2000 when he got his TS dx

 

he is 20yo now and still doing real well with only diet and supplements and acupuncture as treatments.

He has been on natural antimicrobials like Monolaurin, Olive leaf extract, garlic, ginger, honey, turmeric, candida cleanse etc for a long time tho so it's possible those have kept any PITAND component under control I guess?

They had him on some antibiotics initially for infected complications from the Crohn's but as with most prescription meds, he didnt do well on them

 

but doing really well now for quite some time with the diet & supps

 

 

 

 

linking two other recent threads on the subject of inflammation for those who may not have read them

 

http://www.latitudes.org/forums/index.php?showtopic=7072

 

http://www.latitudes.org/forums/index.php?showtopic=7075

 

although we dont think my son is PANDAS (tho may be PITAND, with genetic inherited Tourette Syndrome) he does have inflammation and autoimmmunity from Crohn's Disease and we can attest to the remarkable improvement from anti-inflamm diet and correct supplements. It has also helped with his overall health and so with the tics/OCD too

 

 

Has he ever been tested for Mycoplasma? Because I just read that Mycoplasma can sometimes cause Crohn's Disease. I have two nephews with Crohn's and my sil is now going to look into it. AS we talked she remembered that previous to one son's allergies starting out of the blue with Crohn's following shortly after, that he had a bad cough and when she took him to the doctor after listening to his chest they said he had cold induced asthma. He was never tested for MP. Maybe it was that after all and for him it went to his intestines instead of his brain? worth looking into, I would think. MP sounds like it can cause a range of autoimmune problems if left untreated.

Angela