So what is really going on?

[faith]

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

[Tattoomom]

Faith,

 

I don't have any answers, I just wanted to say that I completely understand your confusion and frustration. I feel the same way as you a lot of the time and our son's present in a very similiar fashion.

 

Hopefully we will both find what works for our boys. Until then, just know that you're definitely not alone.

 

Tricia

[faith]

yo, just to boost my case, I found this post from 2007, it seems I'm reporting the same. I was looking for posts where some of us talked about our kids tics and symptoms in relation to illness. whatever I find that relates, I'll post here.

 

http://www.latitudes.org/forums/index.php?...amp;hl=sickness

[Tattoomom]

Yes, I was posting a lot back in 2007 as well.

 

What's weird about my son is it seems like illness brings out a burst in tics but the tics don't go away with the illness. It's like they linger and change and linger and change. And then they just go away completely until the next episode.

[fuelforall]

Faith,

Very interesting post, our boys are similar.

HOWEVER, has your son ever had high ASO titers and such? Mine has, a couple times.

 

Just wondering. I'll think more about other issues as i have time. Mr Hyperactive is hounding me right now.

 

Total flipout this morning, been a lot of those this past week, think it's the anti psychotic drug making him more psychotic.

[P_Mom]

Faith...now that he is in an upswing....(I know you don't want to do it)...but NOW would be the time to try a steroid burst. (Only do the 5 days) I think it will help give you your answer! If you still have anitbiotics left...give him a proph zith dose for a bit while you do it.....

Just me two cents!!

[faith]

Yes, I was posting a lot back in 2007 as well.

 

What's weird about my son is it seems like illness brings out a burst in tics but the tics don't go away with the illness. It's like they linger and change and linger and change. And then they just go away completely until the next episode.

 

 

same here, but I don't think my son's tics or issues ever totally resolve, they are always there on some level.

[faith]

Faith,

Very interesting post, our boys are similar.

HOWEVER, has your son ever had high ASO titers and such? Mine has, a couple times.

 

Just wondering. I'll think more about other issues as i have time. Mr Hyperactive is hounding me right now.

 

Total flipout this morning, been a lot of those this past week, think it's the anti psychotic drug making him more psychotic.

 

 

no high titers of ASO or Anti Dnase ever, and we've had it done about 4 times over the years. if I had one or the other, I'd be more convinced, at least for the abx usage anyway.

[faith]

Faith...now that he is in an upswing....(I know you don't want to do it)...but NOW would be the time to try a steroid burst. (Only do the 5 days) I think it will help give you your answer! If you still have anitbiotics left...give him a proph zith dose for a bit while you do it.....

Just me two cents!!

 

I think I'm going to gauge him in the next couple of days. I don't have a script for a five day burst, only the 30 day, and yea, too scared. and even so, I'm just not a fan of it if it is going to temporary. Being that we are not streppers here, I'm wondering about olive leaf. I gave him one capsule last night and think I'm going to experiment with a month of that. if its supposed to be anti-viral, it makes some sense if what I'm dealing with is viral. but I still don't really understand what it does. will it eradicate viral microbes just as abx wipes out the strep antibodies? don't know if that makes sense. but things are not scary crazy yet, so I think I'm going to sit tight, have a bottle of champagne all to myself tomorrow nite and go from there..........whaat?.....

 

I guess I'm trying to figure out where us non-streppers fit in and how to get to the bottom of what ails US. does that make sense?

[kcdc3]

Please remind me if you have had him tested with the Cunningham study and what his score was?

[faith]

Please remind me if you have had him tested with the Cunningham study and what his score was?

 

cam score was 179

he also showed very high anti-lysogangliose, it was 1200. don't know what or if that means anything tho.

[MomWithOCDSon]

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.

 

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

 

Hey Faith --

 

Like you, I'd give my eye teeth for some more "absolutes" so that I'd know for sure I'm doing as many right things as possible to help my son. Here's what I would say to your primary questions above, and they are definitely colored by some recent posts on this forum and some recent first-hand experience.

 

1) Could the sore throat be caused by drainage from his sinuses? I know my son frequently complains about a sore throat, especially in the morning, and its usually due to some post-nasal drip he's had going, especially during the night while he's asleep.

 

2) My son never tested positive for strep, either; however, the ASO titer blood test we gave him revealed a titer count more than double the "normal" range, so he had definitely been exposed, even though he was, excluding potential PANDAS, asymptomatic. So was Sammy Maloney. Coincidentially, I've had one doctor tell me that strep likes "hide out" in the sinuses, which sort of brings us back around to question No. 1 in a way.

 

3) I think most of the finger-pointing is at strep because neurological, auto-immune issues are relatively new in the medical field, but strep happens to be the "poster-child" infectious agent that's actually been studied, at least to some degree. If the issue is inflammation of the basal ganglia, it wouldn't necessarily have to be strep, or the antibodies' reaction to strep alone, that might cause the inflammation, right?

 

I wonder about abx in all cases, also; I think a lot of us go there because it's what we know, it has something of a track record amongs much of the population, and, as compared to IVIG, PEX or maybe even steroids, abx are "easier" to obtain, even from physicians who aren't entirely on board with PANDAS or the auto-immune neuropsychiatric relationship.

 

My son is now off of the abx, also. We'd had him on for more than 2 weeks consistently, and had tried a previous 3 week course just prior, with a small break in between to try and assess whether or not the abx was actually doing anything for him. I'm thinking, if he regresses again, we'll head for some steroids and see what the result is.

 

I do wish, however, it felt like something more than "experimenting" with my own kid, though! Heck, I won't even buy cosmetics that are "animal tested," so much of this absolutely goes against the grain!

[faith]

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

[thereishope]

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.

[CandKRich]

.

Edited August 12, 2013 by CandKRich