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So how are you treating the inflammation?


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Hello,

We obviously talk a lot about symptoms on this forum and abx treatment and if we see improvement or not... But my head keeps going in circles trying to figure out how to approach recovery for my DD. Please bear with me as I think out loud but I need to know if I'm seeing all of this correctly!

 

In very simple terms, PANDAS/PITAND has a trigger, some kind of infection, that ultimately causes the autoimmune/inflammatory response.

 

I thought it was interesting to listen to Dr. T on strep monster say that most cases there have been signs in the past of PANDAS but that he "big episode leading to diagnosis" happens between, I believe, 6 and 9 years of age. Again that does seem to be the case according to every board I've been on! So then we know that CHRONIC PANDAS is the norm, and not the exception.

 

So you treat with abx to try and clear the trigger. But you are still left with symptoms - they may be slightly less then when you started but for most of us, that is not acceptable. So then what? The next step is stopping that inflammatory response that is now attacking our kids own brain.

 

How do you do this? Because I have yet to have any Dr. really talk about this part with us, outside of a chiropractor! And I don't see much of it on here either. Unless I'm just reading the wrong posts ... So I'm wondering-

 

how are all of YOU treating the inflammation that remains when the trigger is gone? Steroids, Motrin? Supplements? IVIG? I'd love to hear some success stories right now that give me some hope this can be reversed.

 

Thanks :)

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We try to follow a less inflammatory diet - so we avoid artificial preservatives, food coloring,MSG,hydrogenated anything, and processed foods in favor of fresh, non GMO, meat from pasture raised animals free of added hormones; we try to get lots of probiotics in foods as well as supplement form and give vit D and omega 3 supplements too. I watch the sugar intake and we use mostly raw honey, molasses, and real maple syrup when we sweeten. I try to ensure that they get good quantities of veggies and protein as they would eat nothing but carbs all day long if allowed. I wouldn't call it a cure but I do believe it helps. I can tell you that personally, my energy has improved, my allergies and asthma are far less likely to flair, and my water retention issues disappeared once I made this switch.

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I think there are two levels of fighting inflammation - the "this is a crisis and we need big guns" level and the "oh crap, it's bubbling up and we need to get on top of this" level (sometimes it's the "I wish I had a big gun but don't, so what can I find in my own house" level)

 

Big guns are things like plasmapheresis, IVIG and steroids. Big guns need a doctor on board.

 

Coping guns are things like

motrin - not just one dose but steady dosing for a period of time

curcumin, tumeric (Enhansa is a product that is made of tumeric)

anti-oxidants like alpha lipoic acid, resveratrol, vitamin C, vitamin B6 which is needed for a working detox system

antihistamines like quercetin, allergy meds and pepcid/prevacid which also block a type of histamine and seem to help some kids

diets that heal the gut

things that help close the BBB like lecithin and phospholipids

supplements that support "calming" neurotransmitters like 5-HTP, tryptophan, gaba

also, some antibiotics have anti-inflammatory, immune regulating traits

 

These things may not all be "true" anti-inflammatories, they help to calm things down.

 

You're absolutely right. You need to get rid of the infection as step one (plus be on the look out for things like mold and yeast). But then stopping the inflammation is step 2 and also necessary before the behaviors recede.

 

The other thing that I've found hugely important is to have a system that's not clogged up. It's why methylation is so important to me. If your body's systems aren't working properly, the impact of inflammation gets amplified.

 

I think this stuff probably gets discussed a lot, but maybe not on threads dedicated to the subject and not always using the term "anti-inflammatory". I tend to use the term detox but in my mind, detox helps reduce inflammation. So trying to say the same thing but using different words.

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Heavy and prolonged abx have taken my son very far. It is hard to remember how bad he was 2 years ago, because it has been so long since I have seen him like that. He has been on Augemntin, then Cefdinir for a year, then a combo of Augmenin 2 x D and Azith 1 x D most recently since the end of 7/11. He has had flares and we have done 2 runs of steroids. he has had excellent results that were pretty long lasting. He had a T&A 2 years ago, which kicked off a major acute episode, but I feel that in the long run, has quieted his symptoms as well. Were we to do it again, we would demand sterilizing abx prior to the surgery. He is fully functional, ahead of many of his peers academically, and socially accepted. However, he still has some residual symptoms of mild OCD, intermittent hyperactivity, very mild choreaform, a breathy vocal tic an separation anxiety in the morning when I drop him at school. These are things that we could handle and live with. However, even on the daily abx, he occasionally responds to Strep or other infections. Although he does not get infected himself, his antibodies react, causing flares that encompass more significant symptoms: chorea, increased tics, irritability, behavioral issues, hyperactivity and sometimes, "brain fog", which is the most disturbing symptom. These flares seem to occur less and less, but when they do, it is very disturbing and the world around him does not understand. This can lead to increased social issues at school and in the community. Because he is only 6, people do not notice most of his symptoms and you would not know he has PANDAS unless I told you. 6 year old boys do some weird things, normally! However, we feel that as time goes on, we need to try to eradicate these residual symptoms and most certainly try to calm the flares that come out of the blue for periods of days and sometimes a few weeks, then fade away. It is for this reason, that we are going to do a large dose of IVig next week. He looks great right now, no flares, but we know that they will come back, especially with flu/Strep season around the corner. In addition, he cannot continue on the current dose of abx indefinitely. The abx treatment is what has kept him healthy, and now we are attempting something more permanent. That being said, he is a very good candidate for success with 1-2 IVigs, but there is not guarantee. Some kids respond very well, some not at all and many do well for a period of time and go back for further IVig treatments. We have weighed the risks an we are giving it a shot. As one of our docs said "We would be doing him a disservice if we didn't at least give it a try". So, I can only speak for ourselves, but this is the progression of treatments and the options that we have utilized, and will be utilizing. Warm wishes, Kath

Edited by Beeskneesmommy
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EmilyK - yes diet is definitely one way to go... We follow an almost identical diet to what you are speaking of. our biggest and most recent change has been to go gluten free and dairy free with our DD. I can't say I've seen much of a change in the past month, but I know from personal experience it can't hurt!

 

LLM - thanks for your list! I knew you'd have a bunch of suggestion! I have yet to go the Motrin route, so I am considering it, just worried about the liver enzymes. Any idea if doing resveratrol and Motrin at the same time is a bad idea?

 

We may need to try the steroid burst to see if we can get anywhere also. Who knows... We just had a bunch more blood work done so I'll be curious to see what those results say and if we are still looking at current infections. If those seem to be under control I want to be ready to fight the inflammation in a serious way!! Thank ladies!

 

:)

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I find this post so relevant to what we are dealing with...residual symtoms after treating infection (and yes I've tested her and treated accordingly for tick borne illness). Tired of the abx bandaid....I am seeking to turn this around. Our kids who respond so well to abx may benefit from an immune modulating treatment to see if it may turn things around for them.. Seeking the same for my 8 yr. old.

 

Amy

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