So what is really going on?

[faith]

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.

 

 

There's some interesting things here, altho I hve to 'study' it a little more. Kim, do you have any thoughts here?

[faith]

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

 

 

The 'cytokines' are ringing some bells for me too. wish I could have this explained by a professional tho. I have an appt. with our old DAN doc, who I think might be able to decipher some of this, I recall him talkinga about cytokines at one point and wanted my son to take a drug called Actos, which was a diabetic med used off label to 'repair the myelin sheath' of these cytokines, or something to that effect, don't recall. I never wound up giving my son the drug, as I wanted to try other natural remedies first. (btw, my son is not on the autistic spectrum, just saw this doc a few years back to try some of the more natural means of treating tics and tourettes. we explored PANDAS testing briefly, but since he had low titers......I'm going to see him again to update him on our journey and see if he has any new information and get his opinion on what might be going on re PANDAS for my guy).

 

Karen, I don't see that my son has any symptoms that would make me or any doc suspect he has strep actually anywhere else, but I suppose its possible. but then I would think that he should respond to abx, but so far, he doesn't. I am still contemplating just trying another type abx as a trial, I guess Keflex would be the next choice. Right now I'm giving the olive leaf, starting out slow, I'll report any outcome. so fare I don't see anything 'adverse' at least, but I think I need to see a few weeks on it.

[faith]

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.

 

tpotter,

yes, I have seen Dr. Latimer. She was fine with looking at my child as a PANDAS case and did prescribe a trial of 30 day steroid as well as longer term augmentin. (If anyone is thinking at this point, so what's this mom's problem?... its because the abx don't seem to work for us so far and we've done a month of augmentin and a month of azith. Since we are not ever testing positive for strep, nor hve high titers ever, I have to crack down and wonder what and if this is the right protocol for my son. I did not do the steroids as I was very worried of making things worse, and I am also only seeing temporary results for some here, so I guess I'm just not confident enough. see, my son is not sever, but nor is he mild, I could go either way, so its a hard call.) Also, I've had some issues of not being able to get in contact with Dr. L. to discuss my concerns, so this just makes it much harder to know what the right thing to do is.

 

I would like to know more of your child's history, past and present, and what protocol you followed, altho maybe you could give that on another thread? (it'll just get buried on this one). I think most of us here would be interested, and any info or feedback yo give regarding your experience would be appreciated. thanks.

 

Faith

[Kayanne]

Tourette's Syndrome Treated with ACTH and Prednisone: Report of Two Cases

 

ENEIDA B. MATARAZZO, M.D.

 

ABSTRACT

 

Two cases of Tourette's syndrome in young boys presented with initial symptoms that coincided with the onset of an infectious disease. Standard treatment with neuroleptics yielded weak therapeutic effects, and provoked significant adverse effects at low doses, in both cases. Based on additional clinical and laboratory findings, it was hypothesized that an allergic process was affecting immunological mechanisms of the brain, and the patients were treated with ACTH and prednisone. In one case, this treatment led to remission of the tic symptoms, which remained improved through lengthy follow up. In the other case, tics resurfaced repeatedly at times of demonstrable recurrent bacterial infections, and required multiple courses of ACTH and prednisone to obtain a complete remission of the symptoms. These findings may provide a new area for research into the etiology and treatment of Tourette's syndrome. The presence of streptococcal infections in these two cases of TS is reminiscent of the findings of antistriatal antibodies in Sydenham's chorea produced by streptococcus, and raises the speculation that some cases of Tourette's syndrome may represent an autoimmune phenomenon directed to parts of the central nervous system following infection and may respond to treatments with hormones that have an anti-allergenic action.

 

 

http://www.liebertonline.com/doi/abs/10.1089/cap.1992.2.215

 

This paper is a great example of (I believe) of PANDAS in Brazil in the 1960's. One of the boys had recurrent ear infections, which caused a perforation in the drum, and they were able to culture the fluid, it was strep.

 

There are a lot of interesting things in it. I couldn't find a free copy, but I paid for one---so if you or anyone else would like to see it, pm me your email address, and I will send it to you.

 

I was interested in the use of ACTH as a treatment for PANDAS. However, Dr. Latimer said that it is a very serious drug that must be given with needles, and always has side effects--it can only be done in a hospital setting.

 

It is actully easy to follow and understand.

 

~good luck

Karen

 

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!

[faith]

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

 

As far as false negatives, I think I get that, altho I have to say, we've had these tests numerous times, at times when he has a sore throat, and at times where he didn't, it's always negative and neg to culture as well. We've had it done by pediatrician a few times, an Infectious Disease doc, our new pediatrician just did it twice in the last few weeks (he even took the swab himself, not the nurse), I have to conclude that my son just doesn't get it or at least will never show it. We've also had the titers taken about 4 different times, also always low. I don't see any signs of sinus problems, stomach or bum. I really wish I could find something definitive, but I'm at a loss. That's why I'm wondering obout viral, since that is where he shows illness. he just got over one about 10 days ago. symtoms are hard to gauge in my son, because he always has them, they don't go away and then come back after illness, again, I wish I saw a clear cut pattern. he always some tics, altho yes, they wax at times, and I wonder why? and the ocd stuff, its always kind of there, altho last night it was bad (erasing and going over letters), and I suppose it could be vamping up because of the viral he just had, but he is also just back to school, so I wouldn't have been able to gauge it while on vacation as he wasn't doing any writing or schoolwork. and his other ocd tendencies are always pretty much there. ..... I guess I just wonder if the damage gets done and the wheels get set in motion, and then any subsequent illness adds to it, .. I mean, I know that is the premise, and Dr. L. has indicated that, but I need something further, since we're not so far responding to antibiotics and I have to wonder what would help him since there is no strep to eradicate? Dr. L. said that the abx was to 'prevent' them from getting further strep, but since we are not chronic streppers, NOT being on abx shouldn't be too much of a problem. UNLESS, these abx do more than meets the eye??? don't know... I think a few of us are in this position, so figuring this out might get us somewhere,.. I really don't know. and why do we have a high cam k of 179? ..... sigh.....

[faith]

I really liked the discussion here and am still looking at virals and 'other' infection as possible causes for my son. Also bringing it up again, as I find the info brought up by 'lyme mom' as interesting. I found some things interesting from a link she posted in another thread that kind of ties into what we were trying to theorize here re microbes, viral, etc.

 

 

The causes of most psychiatric illnesses are unknown. The catecholamine hypothesis does not adequately explain the cause of abnormal neurotransmitter functioning. Mendel stated that human traits are determined by individual genes that function independently of other genes and environmental influences. Koch believed that many human diseases are caused by microbes that exert their effect independently of other microbes, environmental factors, and genes. The cause of most mental illnesses cannot be explained by neurotransmitters, genes, or infections alone. Instead, as stated by Yolken,8

 

most common human diseases are caused by the interaction of environmental insults and susceptibility genes.Many of the susceptibility genes are diverse determinants of human response to environmental factors, including infections, and prevention or treatment of the infections may result in the effective treatment of complex disorders.

 

Neuropsychiatric disease is often associated with an interaction of environmental insults and susceptibility factors that frequently results in a pathological interaction including inflammation, oxidative stress, mitochondrial dysfunction, and excitotoxicity, which leads to neuronal dysfunction

 

I mentioned in this thread also that I was going to do a trial of olive leaf extract, so just reporting that I have given it for about three weeks now. 1 capsule per day at 250 mgs. each for about two weeks. then I gave two capsules each for another week. Don't know exactly what I hoped to do here, but syptoms of tics still remain. I may continue with another bottle or liquid extract, I don't think it had any 'adverse' effect, so no harm in keeping on.

 

Also, just to updae, I've gotten our DAN doc to give us a good immuno blood work up, as well as lyme antibodies, Western Blot, and a few other things, so maybe something interesting will show up in the way of something other than strep being a factor. This blood draw was such a pain in rear, twice I showed up at a lab for the draw, waited for an hour in both, and one tells me the don't accept my new insurance (UHC), and the other didn't want to do the T&B cell function on a Saturday, because the test has to be done right away and they may not be able to get to it, so come back Monday....

 

All this is enough to make you want to go hide under the covers somewhere, so many doctor visits, so many tests, so many different answers from each, or no answers at all, we all know we'd like to have those answers yesterday. Choreographing all this, I don't know if I'm coming or going,.... or if I went... I am moving on to the best of my ability, all while trying not to make my son feel like there is something terribly wrong with him. I want to find out as much as I can and manage his health without making him a nervous wreck, he is afterall going on 11 and is beginning to understand all this.

 

I'm doing what I can with grateful guidance, input and advice from all of you here. I admit, tho I am just cautious and have a need to understand all these things before I come to any conclusion. I'm not as confident as some here, but hopefully after I am armed with as much info as I can find, I'll be able to make the right decisions for the course of treatment for my child. With this, I hope that my own experience and 'questions' will somehow help even one other parent here with the answers for their child as well.

 

Faith

[dcmom]

Faith,

 

I haven't read this whole thread, but I really feel for you trying to figure this all out.

 

I just wanted to mention a few things from my family's experience, for what it is worth:

 

My younger dd had clearcut, textbook pandas onset. Overnight urinary frequency, ocd, separation anxiety, tantrums, spiraling down over a few weeks, then with positive strep culture. No high titers. Responded at first onset to a month of , very positively. She then has has subsequent episodes- one week post T&A, then strep exposure, minor blip with lost tooth, major episode post H1N1. After the first episode, unfortunately the antibiotics alone did not stop the symptoms. She has done 2 steroid bursts with extremely positive results. We did end up doing plasma pheresis for her, because it felt like she was more often in an episode, than out. That seems to have helped calm things down generally, although not a cure so far.

 

Older dd had strep at same time as sister. Keep in mind neither had ANY symptoms. We found out because younger one had it in class, then I found pandas and had them tested. Since older one had strep she has changed, but it was MUCH milder than her sister. We may have never found out she had strep if it wasn't for her sister. She has had anxiety, ocd, stomach aches, restrictive eating, moodiness, etc. that has come on more slowly than her sister. But it is there.

 

So I guess I am saying- you don't need to find the strep- or what initially triggered this. It may not be possible. My kids definately seem to have reactions when they have any immune challenge, though it doesn't always make sense. I would really consider a steroid burst. I know it is scary, but if Dr L is confident- I would try to trust her. I can tell you it has made a HUGE difference for my little one, she has gotten longer than temporary relief. The jury is still out on her sister, she is on he second burst. The first one worked wonders, but temporary.

 

I can tell you, even if the relief is temporary, as a parent it is SO helpful (although heartbreaking) to see who they should be. It helps you to push forward with treatment.

 

This is a tough road.

[reactive]

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

Faith...if you see this...I get the same doubts you do. My ds9 has had symptoms since age 3 or 4. The symptoms were so dramatic and severe then, and of course also had the weird joint pain thing where he could not walk at the time. Our neurologist at the time said it was not PANDAS due to a normal ASO titer. It was the ONLY lab that was checked. So we went about our lives and dealt with it. Or should I say have been dealing with it. It only occurred to me recently what I deal with all the time with my so called currently mild symptom son may not be that mild at all. Yes, he does really well. But if I am really honest, life for our family is HARD. You get used to a lot-especially with the OCD stuff. In addition, at least in our case, I have realized that no, this is probably NOT just OCD/TS for us because I keep going back to the joint pain thing and the staring episodes where he appeared "gone". I just don't that that could be regular OCD/TS. I do not know your history. But currently, our son sounds a lot like yours, like he could be just OCD/TS. But I don't think he is. And your son could be PANDAS as well. Lastly, I most recently have made the parallel with my son and my reactive arthritis. To put it in perspective, this arthritis can be caused by infections. And, it was so severe, with a 103 fever, when it first came I could not walk at all or work for over a month. After blood cultures and 14 other tubes of blood to check for infections and other things, no infection or abnormal lab was found. But it is autoimmune, and comes and goes when it wants. A lot of autoimmune diseases do that- come and go. So I wonder, there may be different triggers for autoimmune conditions... and maybe they can be hard to find. When my arthritis flares it isn't always when I am sick. And they don't check me for infections, they give me short term steroids to calm it down. Just food for thought....treating the autoimmune process of the disorder instead of stressing all the time about what is the trigger...I think that is what Dr. K. means when he says in his website that antibiotics may not be the long term solution and why he pushes for the IVIG...

[laurenjohnsonsmom]

DCmom.

 

OMG! I thought you were talking about MY younger daughter when you were describing your other daughter (anxiety, ocd, stomach aches, restrictive eating, moodiness) and exactlly how you diagnosed her (through the other daughter). My younger daughter seems to still function as her syptoms are mild (or we have just learned to adjust), sigh..

 

Did you have either or both of your daughters tested with Madeline Cunningham? Both my girls were in the PANDAS range?

 

 

Faith,

 

I haven't read this whole thread, but I really feel for you trying to figure this all out.

 

I just wanted to mention a few things from my family's experience, for what it is worth:

 

My younger dd had clearcut, textbook pandas onset. Overnight urinary frequency, ocd, separation anxiety, tantrums, spiraling down over a few weeks, then with positive strep culture. No high titers. Responded at first onset to a month of , very positively. She then has has subsequent episodes- one week post T&A, then strep exposure, minor blip with lost tooth, major episode post H1N1. After the first episode, unfortunately the antibiotics alone did not stop the symptoms. She has done 2 steroid bursts with extremely positive results. We did end up doing plasma pheresis for her, because it felt like she was more often in an episode, than out. That seems to have helped calm things down generally, although not a cure so far.

 

Older dd had strep at same time as sister. Keep in mind neither had ANY symptoms. We found out because younger one had it in class, then I found pandas and had them tested. Since older one had strep she has changed, but it was MUCH milder than her sister. We may have never found out she had strep if it wasn't for her sister. She has had anxiety, ocd, stomach aches, restrictive eating, moodiness, etc. that has come on more slowly than her sister. But it is there.

 

So I guess I am saying- you don't need to find the strep- or what initially triggered this. It may not be possible. My kids definately seem to have reactions when they have any immune challenge, though it doesn't always make sense. I would really consider a steroid burst. I know it is scary, but if Dr L is confident- I would try to trust her. I can tell you it has made a HUGE difference for my little one, she has gotten longer than temporary relief. The jury is still out on her sister, she is on he second burst. The first one worked wonders, but temporary.

 

I can tell you, even if the relief is temporary, as a parent it is SO helpful (although heartbreaking) to see who they should be. It helps you to push forward with treatment.

 

This is a tough road.