Just got back from first neuro appt.

[EAMom]

edit...double post

[EAMom]

Hi Faith,

 

Big ditto on Darla's above question.

 

How was it determined your son was not PANDAS? I skimmed your old post. Your son responded to antibiotics and had a strep infection (cultured positive?). I saw that his titers were low...but you can't rule out PANDAS based on low titers (this is my mantra !). My dd had full blown psychotic anorexia nervosa PANDAS (positive culture) with low titers.

 

A lot of docs are confused about the titer issue. ASO, anti-dnase B are not the antibodies that are the source of the problem in PANDAS. The problem antibodies are (IMO) anti-brain antibodies (which you could only measure in the CSF). ASO/anti-dnase B are useful when your child is no longer culturing positive for strep and you are looking for evidence of a past strep infection. Response to antibiotics and positive culture are far more important clues if you have that.

[faith]

Darla,

The thing is that his titers were not high, not even close, and he basically does not typically get strep, and I don't have other children, so there is no exposure there. And the infectious disease doctor basically felt it was not the case as he did not fit with high titers, so that was that. If I thought there was more to it, I would have gone on, but I just didn't see what I thought others were seeing. I did subsequently get my regular pediatrition to prescribe more antibiotic at a later date just to see, but again, it wasn't clear or worth persuing unless I saw results. I just think he's plain ts.

 

What happened at that time makes me suspect that there is probably definitely something to the strep infection (or some type of infection, and possibly viral also) that does contribute or let's say aggravates the situation. But I just never saw the dramatic, overnight stuff, and does not have hyperactivity or behaviors that seem to follow some sort of pattern like some here describe. When he gets sick, its like a 24 hour viral type thing with vomiting and sometimes fever, but ironically, he ceases ticcing at that time. He's had tics (mainly eye/head and a vocal) waxing and waning since he's about 3 (he's 9 now). Oh, and I have subsequently tried another course of antibiotics once or twice after that when he was waxing just to see what would happen, and it did not follow the same pattern of getting better while on the antibiotic. And if truth be known, I was not anxious to get on that coaster of antibiotic treatment, for that comes with its own caveats, you know? I do see ocd behaviors, but my son is funny, with all this, he presents as a pretty typical boy, and if I didn't tell anyone what the issues were, they would not be noticed for what they are. I mean, ts is basically a "syndrome" and comorbid issues such as ocd and ADD/ADHD do fit in there. But again, I just don't see exacerbations (even tho there is waxing) where everything breaks loose at same time. I do have a heck of a time with him, but most of it, I am coming to see, is because of the ocd, basically the rigidness in his routines and the amount of time he wastes with all his quirks, is what basically drives me crazy. I see an "erasing" thing going on while doing homework, and it is in school too, so his work takes double and triple the amount of time. He stalls alot and fools around and pushes my buttons because I have come to realize this is his way of "avoiding" the uncomfortable feelings and anxiety that he knows will come on once he gets the pencil in his hand. So in my frustration, there is alot of yelling going on around here Its like I can't believe it could get this out of hand, where I am now seeing that this ocd IS interfering with his life and our home life.

 

That's my take on it. Once we had a discussion going on here about what one considered "severe" or "mild" symptoms, and basically, that answer is all relative. Relative to what a person is used to. So sometimes i wonder what some consider dramatic behavior and ticcing. I guess if the child is young, and you see this going on, one might think it dramatic, where I might say "that's nothing", you know?

 

Hope this helps you figure some things out.

 

Faith

[Darla]

Faith,

 

I understand exactly what your saying. Even if your son does have PANDAS it almost seems at the very low end. I mean if your seeing a change with viruses aggrivating the situation. I was suprised to see that his tics waned when he was sick. It makes sense that if you didn't see improvement than why continue especially with the side effects. It's not something you just say okay lets do it! We have a lot of yelling here to at times. He makes us really work at this job of parenting. People ask why such an age gap with your two children? I want to say because my son is equal to four! LOL

 

I am hoping to get a little further with some testing to see if he has any deficiencies or toxins. I don't know, i would like to figure out what his dopamine and seritonin levels are. NOt sure how to go about finding that out. He's got a developmental pedi appt in the near future. I think it will be the begining of february. I have to fill out a ton of paper work as well as have his teacher fill some out. If I can learn more affective parenting and do some behavorial therapy for his oppositional personality and explosive temper, along with suppliments- oh and keep him from getting sick. LOL seriously though, I just don't know if hes got PANDAS. Maybe I'll give another round of anitbitocs for a couple of weeks to see if I notice an improvement. He always seems to have horrible episodes of behavior and then hes an angel at times too. ughh Thanks again!! Definately helpful.

 

Darla,

The thing is that his titers were not high, not even close, and he basically does not typically get strep, and I don't have other children, so there is no exposure there. And the infectious disease doctor basically felt it was not the case as he did not fit with high titers, so that was that. If I thought there was more to it, I would have gone on, but I just didn't see what I thought others were seeing. I did subsequently get my regular pediatrition to prescribe more antibiotic at a later date just to see, but again, it wasn't clear or worth persuing unless I saw results. I just think he's plain ts.

 

What happened at that time makes me suspect that there is probably definitely something to the strep infection (or some type of infection, and possibly viral also) that does contribute or let's say aggravates the situation. But I just never saw the dramatic, overnight stuff, and does not have hyperactivity or behaviors that seem to follow some sort of pattern like some here describe. When he gets sick, its like a 24 hour viral type thing with vomiting and sometimes fever, but ironically, he ceases ticcing at that time. He's had tics (mainly eye/head and a vocal) waxing and waning since he's about 3 (he's 9 now). Oh, and I have subsequently tried another course of antibiotics once or twice after that when he was waxing just to see what would happen, and it did not follow the same pattern of getting better while on the antibiotic. And if truth be known, I was not anxious to get on that coaster of antibiotic treatment, for that comes with its own caveats, you know? I do see ocd behaviors, but my son is funny, with all this, he presents as a pretty typical boy, and if I didn't tell anyone what the issues were, they would not be noticed for what they are. I mean, ts is basically a "syndrome" and comorbid issues such as ocd and ADD/ADHD do fit in there. But again, I just don't see exacerbations (even tho there is waxing) where everything breaks loose at same time. I do have a heck of a time with him, but most of it, I am coming to see, is because of the ocd, basically the rigidness in his routines and the amount of time he wastes with all his quirks, is what basically drives me crazy. I see an "erasing" thing going on while doing homework, and it is in school too, so his work takes double and triple the amount of time. He stalls alot and fools around and pushes my buttons because I have come to realize this is his way of "avoiding" the uncomfortable feelings and anxiety that he knows will come on once he gets the pencil in his hand. So in my frustration, there is alot of yelling going on around here Its like I can't believe it could get this out of hand, where I am now seeing that this ocd IS interfering with his life and our home life.

 

That's my take on it. Once we had a discussion going on here about what one considered "severe" or "mild" symptoms, and basically, that answer is all relative. Relative to what a person is used to. So sometimes i wonder what some consider dramatic behavior and ticcing. I guess if the child is young, and you see this going on, one might think it dramatic, where I might say "that's nothing", you know?

 

Hope this helps you figure some things out.

 

Faith

[EAMom]

Faith (sorry this got a bit long),

 

My PANDAS dd's titers were low both times they were checked. She had full blown psychotic PANDAS with anxiety/depression/OCD/anorexia nervosa (and positive throat culture 3/08) starting with FEVER 1/08. ASO was 39 3/08 and then ASO was 28 4/08 (symptoms ramping after initial mood improvement on augmentin 3/08). Both of these values were considered rock bottom low (high was 166 and up 1st lab, 199 and up 2nd lab). Anti-dnase B were also extremely low both times.

 

So it's fine if you've decided he doesn't have PANDAS for other reasons...just don't let the titer issue be a deciding factor on the diagnosis. Also, as far as response to abs, our dd finally responded to Azith. (4th ab we tried) started 6/08. We think that one worked b/c it gets intracellular strep and is immune modulating. Response wasn't overnight...mood improved after about 5 days, OCD after about 10 days on Azith. Tics took 6 weeks to go away.

 

Another thing I find interesting is that my kids never were never (ever, in their lives, despite bringing them in for fever many times) given a strep test until March 08 (when we insisted b/c dh and I learned about PANDAS). Apparently our kids don't get a classic sore red throat. Fever perhaps, but that's it. We've realized our younger dd (strep carrier) will pick up strep with no symptoms whatsoever. Some other PANDAS parents kids sometimes have a similar problem...the only "symptoms" they get when their PANDAS child has strep is a behavior change...then they know it's time for a throat culture.

 

In a sense, I'm a bit relieved that things got so bad (symptoms ramped 2/08, and 3/08 after tooth extractions) that we were able to come to a diagnosis. I just wonder if she hadn't had the extractions if she would have continued with tantrums, mild ocd stuff ("relatively" low grade chronic PANDAS symptoms) and attributed her behavior to porr parenting or "other" psychiatric problems etc. (We believe the PANDAS symptoms got much worse b/c each extraction allowed strep from her throat to be released into her bloodstream.) I do believe some PANDAS cases can present as more of a chronic problem (esp. if a strep carrier is involved) or the child has had PANDAS for a while (where they're may be a "baseline" change) and PANDAS kids don't respond to abs after a point.

[faith]

EAMom,

thanks for your input. I do understand about the titers not being the sole criteria, and I have kept abreast of most of the PANDAS info for the most part. For all I know, I suppose there could be an outside chance that our issues could possibly be related (but my gut instinct just isn't there) What I don't see is any correlation to strep and the symptoms becoming dramatic or acute. As I said, I did, at the time after that episode I relayed, try antibiotic a couple of times (my pediatrition was willing if I said it helped, for he felt abs couldn't hurt), and I have gone in a couple of times to also ask to be checked for strep when he had a waxing, but again, that was negative. So with negative cultures (and 24 hr.) and low titers, and me not thinking he followed any pattern or dramatic onset, what else really could I do? I have had some minor tics as a child and even now, so the genetics are there. I kind of feel like I would be chasing my tail if I kept trying to prove this was related to PANDAS. Even for those that are, I do believe that other factors are at play anyway, because from what I understand is that the antibiotics do not alleviate this absolutely, it seems the parents do still have a time of it keeping their PANDAS kids well.

 

With what you explained as your experience, how did you think to keep going and make this conection? Were your child's symptoms just too much or too obvious? I mean what was the major things going on that made you believe this must be PANDAS? I wouldn't mind hearing how your journey started.

 

 

Faith