So what is really going on?

[dut]

Hello

 

Our dd was in the low level, early stage of an exacerbation and we were at the ped's discussing that and following up our ds's steroid burst. Our ped is fully on board with PANDAS and was willing to swab anything that could be easily swabbed :-) All cultures came back negative but the more I think about it....

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our dd had just come through a flul-ike illness that the ped thought was H1N1 but she tested for that and came back negative. I'm now thinking she could have had strep... in the past she has flared when she has had similar illnesses.. sort of cold like with tummy trouble. Symptoms are.. starts off with some nausea and maybe some low level vomiting. No diarrhea. Low grade fever, malaise, cough, slightly sore throat and, sometime in, may develop just a slight snuffle. She doesn't have flares in reponse to just a cold, only seems to happen when it's a fever type illness, no usual cold symptoms but with tummy issues......

[momto2pandas]

This is interesting, because I have had the same experiences with strep tests. When my whole family was battling strep back in 2008 (this was when my ds was first diagnosed), everyone else in the family tested positive for strep except for me, and I was the only one with an incredibly raw, red sore throat and all the other strep symptoms. We went through a few rounds of this, and every time I was the symptomatic one, but the only one who tested negative. My doctor finally just said that in his clinical opinion, I definitely had strep, and he told me that the strep test shows false negatives for something like 2-4% of people for some reason, and I was one of those. I figured it must just be something about my throat and their ability to get a good swab. I never had ASO titers taken during those episodes, though, so I don't know what they would have shown.

 

 

Just for fun, I figured I'd throw out our latest experience with illness, and maybe it could give some of us who don't have the 'typical' signs of the 'bad boy' called 'strep' some insight to how or why or 'if' we are in the zone of PANDAS as well. Could we examine this case? as I feel it may mimick alot of the kids on here who are not the obvious strep connected PANDAS cases.

 

some of you know I have mostly treated my son as tourettes, as tics are his main presentation, but he has the other issues of ocd, sep anxiety, irritabilities due to sensory, emotional upsets, etc....and I've recently tried to see if, how, or where my son fits into the PANDAS (autoimune) category. perhaps it is all autoimune in some way, but somehow we just don't fit the bill as far as getting strep, it is never detected but once that I know of a few years back, and antibiotics that we've tried recently (month of augmentin 1000 mg. per day and azith 250 mgs. per day for about three weeks have had no real impact, and I feel the azith actually gave us a rise in vocals.

 

Well, while my son's issues are all still present, I felt like the tics were at an even level last couple weeks, definitely there, not bad, not great, but let's just say the evil I know.

 

Christmas Eve, his cousin was upstairs sick in bed with recent sore throat and fever (he was on antibiotics that they just had in the house, but apparently the doc did not prescribe them). I asked my son to not go near him, but they did cross paths and were in the same house after all.

 

Monday, (the 28th) when I picked my son up at his friend's house, he said he had a sore throat. we got home and he was hot and did have a low fever of about 100, but didn't go higher than 101. he was droopy and weak and went right to lie down and did fall asleep way earlier than usual. he also said he felt somewhat nauseas and kept threatening to throw up but he didn't, and also refused food. Okay, so to me, this is his typical once or twice a year viral thingy. Also, as is typical for him, as I've noted this in the past, is that his tics absolutely wane considerably during the actual illness. his vocals were almost non-existant and nothing else I could see. really I can only gauge tics, because his other stuff is only apparent in situations, and since he was in bed, the tics are all I could really look at.

 

Now this time, I was going to pay as much attention as I could to how this sick time and his tics (and other issues) played out. in the past, I was not really looking at PANDAS or autoimune or antibodies, or anything like that, so I didn't really gauge how long after he would start to tic again. I recall I would be glad he didn't get worse while he was sick, thinking that the illness 'didn't' trigger more tics. BUT, I did not look at what happened later, like in the days or weeks or even months later.

 

So, just to backtrack, Tuesday I took him to our new pediatrician, we had a standing appt. anyway to get a repeat blood test for something else, so I had him look at him. He did the swab for strep.......negative.....no surprise, it always is. He did not prescribe antibiotics, altho my old one usually did until we got the culture back. but anyway, this new doc is not aware that I have tried antibiotics in the past, but he knows I am interested in PANDAS. I asked him if my son could have strep, but just not show it? he said, no, you either have it or you don't. okay.... so home we go. (btw, my son is NOT on abx right now, I took him off more than a week ago because I did not like the azith, felt he was increasing vocals, and when I took him off, he calmed down considerably the next day....that's another story).

 

So yesterday, his fever subsided, altho he still felt some hurting when he swallowed. By evening he was feeling better altho still somewhat tired and droopy, we spent some time returning items after the doctor, so that wiped him out (and me!).....oh yea, and the doctor told me he made a mental note that the vocal was quiet. I told him this was usual for him when he's ill, but then they return. I asked what he thought and his reply was 'because his nerve endings are not being stimulated".......i really didn't get that, but just said, 'oh'.....we could figure out that later.

 

So then by evening, while we were watching tv, I could see my son's neck tics start kicking up, and he was NOT doing neck or head tics in the recent past. he's had them yes, they were troublesome a few months back, but had calmed somewhat and it was mainly the vocal we were dealing with, other tics were minor and infrequent. He was now turning his head alot. This morning his vocals were back and in full force. I gave him an advil last night (mostly for the pain of the sore throat) and one this morning hoping it might calm the vocal. maybe coincidence, but it seems it did. He is feeling okay now and has a friend over. (oh and yesterday, he came to me about 6 times acting nervous and kept telling me he didn't want to go to the dentist and that he was nervous about it, he knows he has an upcoming appoinment in a week or so.) but it was wierd, because he's almost 11 and he's been to the dentist umpteen times and knows its no big deal.......

 

Okay, so here are my questions about this type of case:

 

Why does he have a definite sore throat, but its not strep?

Why does my son NEVER show strep or strep results?

Being that he is a tics/ocd case, if he has a PANDAS or autoimune connection here, is it just the simple answer that all viral and any illness is going to kick up symptoms? I think I get that, but WHY? and why is the finger only pointed at strep by most of the doctors who are supposedly in the know about PANDAS? I guess they have to draw the line somewhere?

 

But for myself, I want to know that I'm on the right path, and that these things make sense to me. Now that I'm really paying attention, I want to try and understand what exactly could be going on. Since this is my son's first time getting sick since I started looking at PANDAS again, I want to make and record the observations, for before this, I have just a sketchy memory. I know for a fact we've talked on the tics board about our kids and how they react to illness (not necessarily strep), but we never really knew what it meant of if it meant anything at all.

 

If my son starts kicking up his tics from here on, I feel like his being sick set him back, as I guess it does every year. obviously kids are going to get sick here and there, and so he's never going to get ahead of the game by side stepping illness. I actually feel like it is healthy in some way to get sick, its the body's way of fighting off infection or microbes. but do our kids who have these symptoms and neuro issues suffer consequences from illness? my son is not one who gets sick often, this is what he gets, maybe once or twice a year. so is his immune system strong? is that good? are the kids here who get sick often, worse off in the symptom department? don't know.

 

Will antibiotics do something or nothing for us if we are not strep infected? I don't think I need to worry about 'getting' strep, cause it seems he never does. what if it was strep once, and subsequently, the viral contributes to setbacks, and if so, why? what is happening? just more antibodies of some kind? are there microbes of another sort that can do this type thing, attack the basal ganglia? Lately, I've been looking at 'microbes' in general, perhaps they are evil too? how to treat those guys?

 

I hope I didn't write too much and confuse anyone, but I think this is the type of conversation many of us are having in our own minds alot, especially those of us who do not show typical strep and are constantly being told we do not fit the PANDAS criteria by the "PANDAS by the book" docs. If wer'e not, I'm okay with that, but I just want to understand it all. I dont' want to go blindly, if I see some evidence in my child, than it will help me move forward.

 

thanks

 

Faith

[peglem]

And, if your child does not mount a vigorous immune response- you may not "see" illness at all. Most symptoms of illness-what you see, is caused by the immune response.

 

 

peg, could you elaborate? are you saying that if the immune response is not adequate, that they could have some illness or even disease, but not show it?

My daughter would test positive for strep all the time w/ NO symptoms, other than behaviors. No congestion, no swollen tonsils, no fever....the strep was there- the immune system was not mounting an attack. I asked a pediatrician (not her regular one) about it after 3 different specialists (ENT, rheumy, immuno) said she was "just a carrier"- I was so confused...I asked, "So, if the bacteria aren't causing an immune response, does that mean they aren't doing any damage?" He said, "no, they're still a problem." So, in our case, illness was only detected when the neurological behaviors showed up, but evidence of immune response was absent. I don't know if strepA was all she had- it was the only thing she was tested for.

[MomWithOCDSon]

I understand what you say Mom, great that we are all trying to figure this out, and who better than us, but why its all so mysterious, just bites me.

 

As I mentioned microbes, here is something that caught my attention. I don't think they talk about just strep here, but microbes in general. you may not be able to get the full article without subscribing, but I was able to get my librarian to find it somewhere and get me a copy.

 

http://www.scientificamerican.com/article....d-with-insanity

 

Thanks, Faith. Actually, my husband subscribed to Scientific American, so I should be able to dig up that article on my end. In fact, I vaguely remember him mentioning something about a similar topic maybe a month or so ago, when he was reading? Didn't connect it at the time with what we were going through, however. I'll take a look!

[faith]

I just wanted to add that it does devote a few paragraphs to PANDAS at the end and how the strep bacterial plays a role.

 

my point of this is that they are talking about microbes and different bacteria being the possible cause of mental illness, (it starts off with schizofrenia)....

 

 

one quote from this article: (titled "Infected with Insanity"..subtitle: The evidence is mounting: mental illness might be caused by microbes)

 

(the bolding is mine)

 

Some studies suggest that infections per se are not responsible for disrupting brain development; rather the body's immune response to infection affects the nervous system and does damage. " When the immune system becomes activated, it can influence the functioning of the brain and, in turn, emotional and behavioral responses", explains Christopher L. Coe, a psychologist at the University of Wisconsin-Madison who studies the effects of psychological and environmental factors on the immune system.

[MomWithOCDSon]

I just wanted to add that it does devote a few paragraphs to PANDAS at the end and how the strep bacterial plays a role.

 

my point of this is that they are talking about microbes and different bacteria being the possible cause of mental illness, (it starts off with schizofrenia)....

 

 

one quote from this article: (titled "Infected with Insanity"..subtitle: The evidence is mounting: mental illness might be caused by microbes)

 

(the bolding is mine)

 

Some studies suggest that infections per se are not responsible for disrupting brain development; rather the body's immune response to infection affects the nervous system and does damage. " When the immune system becomes activated, it can influence the functioning of the brain and, in turn, emotional and behavioral responses", explains Christopher L. Coe, a psychologist at the University of Wisconsin-Madison who studies the effects of psychological and environmental factors on the immune system.

 

Yes, VERY interesting! We just downloaded it, and my husband and I are perusing it concurrently. I have an electronic version of it in my possession now, but given copywright restrictions, etc., I don't think I can post a link or provide it here, but if anyone wants a copy, PM me and I will gladly share it! Thanks, Faith!

[sf_mom]

Thanks Faith.... I think its important! I also think a few treating Dr.s have already made this realization. Now the science just needs to support their hunch and hopefully that will happen in our life time.

 

-Wendy

[kim]

I only read the last couple of posts on this thread, but it made me think of somethings that I read yesterday

 

Self-Organized Criticality Theory of Autoimmunity

 

http://www.plosone.org/article/info%3Adoi%...New+Articles%29

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1922465...ogdbfrom=pubmed

 

A potential role for pro-inflammatory cytokines in regulating synaptic plasticity in major depressive disorder.

[Kayanne]

I only read the last couple of posts on this thread, but it made me think of somethings that I read yesterday

 

Self-Organized Criticality Theory of Autoimmunity

 

http://www.plosone.org/article/info%3Adoi%...New+Articles%29

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1922465...ogdbfrom=pubmed

 

A potential role for pro-inflammatory cytokines in regulating synaptic plasticity in major depressive disorder.

 

I've come across some stuff on pro-inflammatory cytokines recently too....I was looking for the possibility that my DH's recent upswing in anxiety could be related to his getting the flu in October...

 

Mental illness as a result of post infectious autoimmunity and or cytokine inflammation....so intriguing...I wish I understood even half of what I read about this stuff.

 

I really do think that once PANDAS becomes more understood, it will open researchers minds to dig more into the infectious aspect of it.

 

 

Faith,

I wanted to mention that strep can also be in the middle ear, but unless there is a perforation, you can't strep test the fluid.

 

It really does seem as if your son is reacting to a viral issue. In my mind, formost in the PANDAS protocol is to try to eliminate strep....but what if it is a viral trigger....then I think you are on the right track to consider anti-virals or supplements that claim to be anti-viral. I was looking into using oil of oregano--but I couldn't find any info about weather it is safe to take with pen vk (my daughter takes this as a prophylaxis). Olive leaf extract is not safe to take with antibiotics because it decreases the effectiveness of the drug.

 

Good Luck

~Karen

[momto2pandas]

I think that solidifying/refining the cytokine hypothesis is the key to pharma investment in PANDAS...which, I think, will be the key to lots more research on treatment and etiology. I'm hoping to make strides in this area over the next few months.

 

 

 

 

I only read the last couple of posts on this thread, but it made me think of somethings that I read yesterday

 

Self-Organized Criticality Theory of Autoimmunity

 

http://www.plosone.org/article/info%3Adoi%...New+Articles%29

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1922465...ogdbfrom=pubmed

 

A potential role for pro-inflammatory cytokines in regulating synaptic plasticity in major depressive disorder.

 

I've come across some stuff on pro-inflammatory cytokines recently too....I was looking for the possibility that my DH's recent upswing in anxiety could be related to his getting the flu in October...

 

Mental illness as a result of post infectious autoimmunity and or cytokine inflammation....so intriguing...I wish I understood even half of what I read about this stuff.

 

I really do think that once PANDAS becomes more understood, it will open researchers minds to dig more into the infectious aspect of it.

 

 

Faith,

I wanted to mention that strep can also be in the middle ear, but unless there is a perforation, you can't strep test the fluid.

 

It really does seem as if your son is reacting to a viral issue. In my mind, formost in the PANDAS protocol is to try to eliminate strep....but what if it is a viral trigger....then I think you are on the right track to consider anti-virals or supplements that claim to be anti-viral. I was looking into using oil of oregano--but I couldn't find any info about weather it is safe to take with pen vk (my daughter takes this as a prophylaxis). Olive leaf extract is not safe to take with antibiotics because it decreases the effectiveness of the drug.

 

Good Luck

~Karen

[Megs_Mom]

Faith,

I wanted to mention that strep can also be in the middle ear, but unless there is a perforation, you can't strep test the fluid.

 

 

Good Luck

~Karen

 

Hi Karen - or anyone else - do you have any info (websites, papers) that I can use on the fact that ear infections can be strep? I have documented ear infections, but no strep - it would help to have something in my file. I thought I found a study in Pediatric Infectious Disease Journal back when I first started this hunt a year ago, but I can no longer find it. If I had this proof, it would move us even more solidly into the PANDAS category - it has always been our missing link. Thanks!

[tpotter]

Faith,

 

These are great questions. First, it is possible for a person to have strep without the rapid strep coming back positive (blood tests should be done for ASO and AntiDNAse B. There are also other tests that should be done. I would really suggest that you consider seeing Dr. Latimer in Bethesda. She is a phenomenal Ped. Neurologist, and really understands as much as there is to understand about PANDAS. If you are in the Chicago area, Dr. Kovacevic is a Pediatrician who also really understands what is going on. We saw both (and ended up with Dr. Latimer, primarily because she is closer to us). Anyway, Dr. Latimer is able to rule out other possible causes of your son's tics, OCD, etc.

 

The way I see it (and having gone through it for years before finally finding this group, and getting my son treated PLUS finding out that my other son had it too and treated, even though it was not classic symptoms) is rather than spending a lot of time wondering "if", get it diagnosed by an expert. There are also some excellent articles you can read about on the website Diana put together: PANDASnetwork.org.

 

Good luck.

[rosalyn]

Hi Faith

 

I am new to this forum but I can totally relate to your thoughts. My son was diagnosed in summer 2007 with Sydenhams chorea. He didn't seem to meet the profile and I like you have so many unanswered questions. I just wanted to add to what Vickie said. False negatives are notorious in Strep tests, so even though he tests negative does not necessarily mean it is.

My son also wakes with sore throats every morning - I think it is a sinus thing to because he often sounds a bit nasally.

 

My rule of thumb is after all that has happened if he has a sore throat with a fever, anything above 38C (not sure what that is in Farenheit about 100F I think) I put him on antibiotic. Fortunately like your son my son also has only one or two major sicknesses a year so it is not too often I have to do this. For me its a case of rather be safe than sorry. We will have to deal with superbug after we deal with this.

 

Best Wishes Roz

Okay. I'm going to throw a few things out here. All of these things are going to be jumbled together, so I apologize.

 

You say you remember he had strep once. What age? Were the tics present before strep? If so, about how long?

 

This is just a fyi, in case you are also looking for the devil's advocate in diagnosing TS instead of PANDAS. The psychiatrist told me that with clinical, classic OCD, even when the brain heats up a little, the OCD increases for the time being. So, if it was TS, it may be the same.A worsening after the illness that had a temp increase.

 

How long after being ill, do you see an increase in anything that would be considered "PANDAS-like"?

 

As for the sore throat vs no +strep. Well, that can happen. People can have sore throats w/o it being strep. Now, my doctor (not my child's ped) once gave me a strep test and everything came back negative. He said he was convinced it was strep and gave me meds anyway. So, I don't know about the clean cut "if the test comes back negative, it's definitely not strep" theory.

 

Have you cleared him of strep in other places?

 

How is the cousin feeling? Did they ever take him to the dr?

 

Okay. I think that's enough questions.

[sf_mom]

I listed a couple papers yesterday........ second paper talks about recurrent ear infections especially if its a resilient strain, Group A.

 

http://www.latitudes.org/forums/index.php?...art=#entry50527

 

 

Faith,

I wanted to mention that strep can also be in the middle ear, but unless there is a perforation, you can't strep test the fluid.

 

 

Good Luck

~Karen

 

Hi Karen - or anyone else - do you have any info (websites, papers) that I can use on the fact that ear infections can be strep? I have documented ear infections, but no strep - it would help to have something in my file. I thought I found a study in Pediatric Infectious Disease Journal back when I first started this hunt a year ago, but I can no longer find it. If I had this proof, it would move us even more solidly into the PANDAS category - it has always been our missing link. Thanks!

[MichaelTampa]

Faith,

 

Complicated situation for sure, only skimmed the thread here. I do like the idea of a more MD-style immune-style work-up, perhaps from an immunologist or maybe holistic MD, if affordable. Basically, if the antibiotics aren't working, it does make you wonder if it's not bacteria, but virus. But, I also want to toss out the possibility of fungal infection (candida or otherwise). I just got the DVD's from last year's TS/Tics/Depression conference, and am seeing they talked about that a bit as potentially significant for these types of disorders. As I've got more into the candida fight myself, I have noticed the long list of symptoms candida can cause, and how much overlap with PANDAS, and it makes me wonder about PITAND from candida. Anyway, just wanted to toss out those thoughts, and wish you luck in getting it figured out somehow.

 

Michael