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the more we look, the more we find?


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from another post from Dr. T "I think its very prudent to begin to look for these in patients in whom the "usual suspects" cannot be found, and especially in whom there are multiple affected family members to suggest an environmental exposure."

 

there's been much talk lately about mycoplasm and then this quote is from a thread discussing fungi. what is the general thought of when we are searching for the cause of the problem -- if we find a very viable cause, a 'usual suspect', can we believe that is the troubling cause? do we need to search for further secondary causes that may also contribute currently or longer term down the road? do we find ourselves in a "the more we look, the more we find" situation?

 

also from that thread, caryn(? i believe) suggested we all have potential destructive pathogens and elements of virus/bacteria in our bodies that can be troublesome or exist symbiotically. i believe this to be true. so when discussing a "strep carrier", perhaps most of us are carriers to some degree of many bacteria, etc. and we only need to worry about it when for some reason it is problematic and out of balance, not worry of the fact that it exists within us. or should we be concerned of it's existence?

 

i realize i'm beginning to babble a bit. my concern is with my personal situation in that my son presented with whacked behaviors - not overt tics, not overt ocd, mostly defiant troublesome behavior, cognitive inflexibility, separation anxiety. he had high titers, positive throat culture, confirmed CT sinus infection. behaviors resolved 100% on abx. the trouble comes in that he relapsed when off the abx, improved when back on but not back to the 100% pre-pandas. obviously, we are doing much to support his system and encourage his health. among other things, he's on a homeopathic protocol similar in theory to abx. he had an exacerbation in the fall with a flu that unfortunately, coincided with a change in medicine. strep culture was negative. symptoms were not horrible, still very functional but often troublesome. we ramped back up his medicine. it lasted 8 weeks-ish. last 3 weeks have been very good - still not 100%, maybe 95-ish.

 

where do i draw the line in believing we are on a healing path and he is improving and that we need to be still searching for potential problems within his system? i feel confident we had strong strep infection that got us on this path -- am i only being naive and that's too simple? how do we know? how does one know if they are waxing and waning vs. healing that takes time? how do we know if anything we did made a difference or it was just the 'normal' time of exacerbation and we just are laying in wait for the next?

 

thanks for thoughts.

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hi smartyjones,

 

With a mutiple family affected I see only a predisposed genetic link, and then a infection/viral/immune system overload trigger.

 

My old Dr that I had when I was a little one (many moons ago) would always say "you will get worse before you get better" as the body is fighting etc. The adrenal glands suffer alot when under stress and the whole body gets knocked offbalance

 

I've seen the calm, then the storm, then the calm effect while trying to heal the most important thing - the immune system.

 

I realise now that when we reached the healed calm I didn't keep on top of supporting the immune system which I think all these children need until they reach the point where they will grow strong ones without the full time support.

 

 

 

Jules

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smartyjones-

 

I totally understand your thought process.

 

I really think PANDAS is an autoimmune disorder that has been turned on in our kids. They will now, with immune challenges, have flare ups of pandas. I think it stinks, but I continue to think and hope it is manageable (would be more so with the help of the medical community at large). I really think, for most of our kids, this is the case. Certainly (there was a study on this), the more tests you do, the more you will find. Certainly we can search (even if only philosophically) for the underlying cause of pandas. But, like all autoimmune illnesses, there are ups and downs, long term remissions, and difficult flare ups.

 

Of course, some may have co morbid conditions. If a pandas kid has chronic lyme, I would guess that means his/her immune system is constantly challenged, therefore chronic pandas.

 

If your child has a flare up with an illness, I do not think this means there is strep, or some other "suspect" than what we see on the surface.

 

I don't know that I am right- of course. This is just what I think. My kids were 100% perfect until pandas hit (our life was easy)- so I guess I have a hard time believing/accepting that now it is suggested they have a whole host of issues.

 

I am looking forward to the input of others here, as well....

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from another post from Dr. T "I think its very prudent to begin to look for these in patients in whom the "usual suspects" cannot be found, and especially in whom there are multiple affected family members to suggest an environmental exposure."

 

there's been much talk lately about mycoplasm and then this quote is from a thread discussing fungi. what is the general thought of when we are searching for the cause of the problem -- if we find a very viable cause, a 'usual suspect', can we believe that is the troubling cause? do we need to search for further secondary causes that may also contribute currently or longer term down the road? do we find ourselves in a "the more we look, the more we find" situation?

 

also from that thread, caryn(? i believe) suggested we all have potential destructive pathogens and elements of virus/bacteria in our bodies that can be troublesome or exist symbiotically. i believe this to be true. so when discussing a "strep carrier", perhaps most of us are carriers to some degree of many bacteria, etc. and we only need to worry about it when for some reason it is problematic and out of balance, not worry of the fact that it exists within us. or should we be concerned of it's existence?

 

i realize i'm beginning to babble a bit. my concern is with my personal situation in that my son presented with whacked behaviors - not overt tics, not overt ocd, mostly defiant troublesome behavior, cognitive inflexibility, separation anxiety. he had high titers, positive throat culture, confirmed CT sinus infection. behaviors resolved 100% on abx. the trouble comes in that he relapsed when off the abx, improved when back on but not back to the 100% pre-pandas. obviously, we are doing much to support his system and encourage his health. among other things, he's on a homeopathic protocol similar in theory to abx. he had an exacerbation in the fall with a flu that unfortunately, coincided with a change in medicine. strep culture was negative. symptoms were not horrible, still very functional but often troublesome. we ramped back up his medicine. it lasted 8 weeks-ish. last 3 weeks have been very good - still not 100%, maybe 95-ish.

 

where do i draw the line in believing we are on a healing path and he is improving and that we need to be still searching for potential problems within his system? i feel confident we had strong strep infection that got us on this path -- am i only being naive and that's too simple? how do we know? how does one know if they are waxing and waning vs. healing that takes time? how do we know if anything we did made a difference or it was just the 'normal' time of exacerbation and we just are laying in wait for the next?

 

thanks for thoughts.

 

If we define a "PANDAS-like illness" as the acute onset of tics, OCD, or marked behavioral changes, that are antibiotic-responsive, then I can now say that the vast majority of these children are positive for Group A strep, some other type of strep, mycoplasma, or a putative Lyme-like illness (the p41 IgG/M phenomenon). In some cases, the infection is acute, in other cases chronic with a secondary trigger (like a vaccine).

 

I would stop the workup with looking for those agents ... if not found - I would pursue a minimal immune workup, and consider immunosuppression.

 

Let me emphasize again - Fungi do not appear associated with PANDAS-like illness, but it would be hypocritical for me to not keep an open mind, especially in highly unusual cases

 

In medicine, you can always do more tests. If I do 1,000 tests on every person reading this, it is virtually guaranteed that 10 of those tests will be abnormal. Which leads to more tests. This fishing expedition approach to medicine is not a good idea, for two reasons: 1) almost all the fish you will catch will be red herring (i.e. false positives); 2) the fishing boat is a yacht (i.e. very expensive).

 

I'm trying to come up with an answer to the question: what is a reasonable workup for all children who have a PANDAS-like illness? I think we're getting there .....

 

Dr. T

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I understand this post, as we are in the same place. 98-99% better on abx. But occassional mini-flares, embarrassing to even complain about on this board. But as a mom, I notice & wonder. I think the question I always have is "am I just covering up an issue with the abx" - and how do I ever get her off the abx? We use Azith, and when the dose is decreased, the OCD moves back in, very mildly. Azith goes back up, OCD goes away. So she is certainly not in a place for us to do IVIG. But is that what she needs? And if so, how would I ever make the decision? It's not a worry that is a central part of my day, just a low level itch that sometimes comes to the surface.

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Hi Dr T

 

I think the Fungi issue is really important. When we have die off dd will respond with PANDAS symptoms which I'm convinced leads to a inflammatory reaction (maybe chemical changes in body) in the brain. We have the identical symptoms with strep and die off.

 

Both different causes respond well to abx and advil.

 

Our dr said thay it my be an allergic triggered reaction with the yeast die off.

 

Jules

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I don't think I'll ever know all the factors that led to the perfect equation of PANDAS for my son. I am confident in saying there is a gentic link for him. I have no concrete proof, but I break down why I think that...well, to me it's obvious there is a genetic vulnerability in him.

 

I've changed our lifestyle in a few ways so how do I know if that helps him stay on the right path? I don't. But he's doing better so I keep up with the changes.

 

Was it the strain of strep in his first exacerbation? I don't know. My other two kids did not contract strep that first time, nor did myself or my husband. So I have no one to compare that first case to.

 

I sit sometimes banging my head trying to figure out what happened, how can I prevent it again. Maybe if I didn't send him to that preschool, maybe if I didn't let him eat so much non organic food and expose him to pesticides... I can drive myself crazy thinking about this.

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Just the other night, Dr. Oz talked about the Epstein-Barr virus on his show and about 85% of all people show they have been infected with the virus. For whatever reason it doesn't leave your system and for most it does not have a negative impact. BUT, for others who have been constantly attacked with illnesses i.e. 'weak immune systems' it is a problem..... even causing tumors 'they think'.

 

We are constantly being attacked by virus's and bacteria's and it is the bodies job to hopefully manage those attacks. Most recently, I've been advocating repairing the gut with probiotics (good bacteria), eliminating toxins to lower the stress on processing (Bentonite Clay), repairing nerve damage (B-12) and fish oil (anti-inflammatory, anti-viral)..... To help support our children's immune system as best possible. I am sure there are a ton of ways to support the immune system and our is just one.

 

-Wendy

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Wendy,

 

I fully agree - the gut health/immune system is the most important thing to heal and get working to the max. We also use B12 among other things. The differences between dds stool sample tests after gut healing is amazing, and it shows by the reduction in infections and fevers.

 

 

Jules

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Let me emphasize again - Fungi do not appear associated with PANDAS-like illness, but it would be hypocritical for me to not keep an open mind, especially in highly unusual cases

 

we have had some anecdotal reports on the TS/tics forum of kids who were exhibiting tics and other neuro issues, who were found to have candida albicans overgrowth

 

Someone also linked this report http://www.nutritioninstitute.com/Tourettes_Syndrome.html and I know there are a number of other interesting articles, just havent had time to go back and find them

 

I know we saw significant improvement in my son's tics and general mood after we had done "yeast busting" diet and supps. it did not result in remission of his symptoms, like some have reported, but it was a noticeable improvement, especially in his moods

 

I am not sure how much of a role candida may or may not play in the manifestation of PANDAS symptoms, but it does appear from the anecdotal reports that it can act as a neurological irritant in some people

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The most impressive thing about the US Health system (I don't know if it's every state), it that I was taken sick and went to local medical centre (LA).

The Dr prescribed me abx for ear infection and also probiotics. This is not done here, but I feel it's needed for a more pro-active way to look after your immune system. Probiotics are just taking off now but not fast enough.

 

Also the DRs here are very narrow minded when you talk about candida and most state it's just a theory!

 

Jules

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The most impressive thing about the US Health system (I don't know if it's every state), it that I was taken sick and went to local medical centre (LA).

The Dr prescribed me abx for ear infection and also probiotics. This is not done here, but I feel it's needed for a more pro-active way to look after your immune system. Probiotics are just taking off now but not fast enough.

 

Also the DRs here are very narrow minded when you talk about candida and most state it's just a theory!

 

Jules

 

sadly no, it seems not many conventional docs accept that candida overgrowth of the GIT can cause significant health probs, and many also do not tell patients to also take probiotics 2-3 hrs after antibiotics to restore the "good" GIT flora that the antibiotics tend to wipe out

 

 

 

I learned about probiotics as a little girl, from my grandma, altho she didnt call them that lol. i am in my 50s.

 

she used to make homemade kefir and yoghurt and insist that we had it twice daily "for the good of your stomach". i didnt mind as i loved it :)

 

those are still the two probiotics that our family uses, altho interestingly my son has found kefir too strong for his crohn's condition, so he sticks to Stoneyfield farms plain organic yoghurt.

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Hi cheri,

 

It's interesting that you mentioned crohn's as the Dr wants to test dd for this condition. Am I right in saying that it's an autoimmune condition as it was the allergy specialist that was pushing for this. He also mentioned that crohn's patients don't have a good reaction to over the counter probiotics.

 

He did mention a strange way to treat it - not nice :)

 

Thanks Jules

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Hi cheri,

 

It's interesting that you mentioned crohn's as the Dr wants to test dd for this condition. Am I right in saying that it's an autoimmune condition as it was the allergy specialist that was pushing for this. He also mentioned that crohn's patients don't have a good reaction to over the counter probiotics.

 

He did mention a strange way to treat it - not nice :o

 

Thanks Jules

 

yes, crohn's is autoimmune, and there are some physicians who believe it might be linked to mycoplasma, altho many other theories abound too

 

I am curious re the treatment suggested to you...if not something you want to post about my PM box is open :)

 

my son keeps his under control with careful diet and specific anti-inflammatory, antimicrobial and GIT healing supplements as well as trying to keep stress as low as possible. he takes no meds for it (or for his TS/OCD etc)

 

we have actually discovered that stress and exhaustion are the #1 triggers for crohn's flares in him

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