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adhesion, colonization, invasion and infection


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There's just no rhyme or reason to this. Take my son for example. he gets no symptoms of strep, except for his behavior. Also my two other kids, get no symptoms of strep and they do not have PANDAS. Yet they all got better on a basic 10 day course of amoxicillan.

 

Well, I should say that the strep was cleared up with 10 days of amoxicillan. The PANDAS recovery did take a lot longer than just 10 days.

 

btw...I know my son is in the major minority in this.

 

 

 

So help me understand this a little better............for the ones who don't show outward symtoms like sore throat, and who have had low titers, does this suggest 'colonization'?? and if so, that means abx won't necessarily work for them? this seems to be in line with us. .... we've only had success once on abx when he WAS symptomatic for strep and WAS diagnosed. but the following times, I just asked our ped to let me try again when my son was waxing with tics (no outward illness) but it did not seem to help. so this does seem to correlate with us. Does this mean that no antibiotic of any kind would probably not work for us? we havn't had any recent illness and havn't tried abx in about two years.........so what happens with us in this type category? I'm still trying to figure where we fit in.

 

Faith

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Buster, EAmom-

 

Ok, so my daughter had her second pandas episode brought on by T&A in June. Right before the surgery she was almost 100%, on prophylactic zithromax.

 

So my thought is it was caused by one of two things: either the sedation, or, stress on the body of surgery opened the blood brain barrier which allowed those bad antibodies that were still hanging out, to cross. Or, she had some strep in her throat and tonsils, that was only colonized and during surgery was introduced into bloodstream.

 

She is getting pex in two weeks.

 

If it was a breech of the blood brain barrier, then we are doing the right thing by removing antibodies. My only concern is- what if she has colonized strep? What is the process to clear that (if any)? I am going to keep her on 200mg/day zithromax untill pex- do you think that will help? Is that maybe why so many kids do well on full strenght antibiotics, and have trouble if you try to back them down? Maybe our kids are not benign carriers, but more have chronic strep?

 

Any insight would be helpful....

 

Eileen

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Thanks for all that Buster .

 

A few questions back to you:

 

Re:

Look for an episodic course

As far as we know, PANDAS seems very similar to Sydenham Chorea and is looking less and less like chronic tic disorders or Tourette Syndrome. What I'm getting at is that tics that are there relatively constant without cessation probably are not the episodic course characteristic of PANDAS and Sydenham Chorea. I say probably, because we don't really know.

 

......The 'episodic course' looks a little muddy to me. If the criteria is still that there should be a "dramatic" increase of all symptoms (tics,ocd,behavioral, etc.), I can't attest to this over the years (again, except for one time about 2+ years ago where that did fit one weekend when he was about 7, (new tic waxed wildly, hyperactivity very obvious, almost manic behavior, said he had sore throat, took to doc, prescribed amoxy, everything waned in a couple of days)...(but let me interject here that I had already seen some tics in my son since 3 1/2 yrs. old).....So ince that weekend I had been on the course to investigate this but subsequent low titers and no other illness caused me to stop searching and accept TS. Did my son subsequently over the years wax and wane? Yes, sometimes better times, and then a boom and things would be bad. we would deal with this waxing for a couple of months, but at those times I was focusing on the tics, not really looking at the other behaviors, such as OCD, (which I now see was there the whole time.... I just accepted it as a comorbid issue). Was my son "out of control"? no, but I have had some very rough times, this house is always about how my son is doing. When things are not good, we shut down, and I have even had to bow out of holiday gatherings where we would pretend we were taking a little trip instead so my family would not see what was going on with him. .....SO, basically, in the last two years, I have not really kept abreast of the PANDAS issue, I can't say I see a kid who is "neurotypical" for several months and then BAM, he changes. He always got tics, they are his typical presentation. OCD tendencies (ala perfectionism, everything taking twice to three times as long to do), all the behavioral stuff we talk about here, etc. So for me its blurry, yes there are times when its worse,and times when its better, but I can't say white one day and black the next. But then again, its not like he just has a chronic tic that stays the same always. For instance, in the above example of that one weekend of the strep dx, he had a really bad eye roll/looking up that was frantic. then it subsided. then he'd be good for a while, (but not totally out of the woods), I might see some blinking here and there. ocd tendencies, but nothing noticeable to others, like obvious classic ocd. I would follow dietary restrictions, supplements, and he'd be okay for a bit and then all of a sudden he started shaking his head bad and turning his head. Then that might subside, and he had a throaty sound that was gaining strength. some time frames that would be better, I might hear it at night, but then the teacher reported he was doing it at school. then it would subside to a softer "ck" sound during the summer, and then the next semester of school, start up louder again. My son doesn't get sick alot, only a 24 hr. virus about once or twice a year, where he'd have a fever and vomiting, and then be better by next day or so. he didn't exacerbate during the virus or that week. Did he at some time later,? I wasn't looking for that, I just got used to the ups and downs. so I can't say without going back and seeing if I can connect any dots by thinking back really hard and seeing when I wrote on the TS board in a panic about a waxing.

 

I'll just add that the couple of times right after that weekend with the strep, even tho he didn't show signs of illness, but he was waxing with something (probably when the vocal started), I did take him for throa culture because I saw maybe 3 or 4 little dots on back of throat, but he didn't say it hurt. swab was negative and culture was neg. I did ask the ped to let me try abx again to see what would happen. he didn't give me a hard time and gave the the script. but I felt it didn't help. So I basically packed my bags after that and just kept focusing on natural treatments.

 

So what do you think of all this? Am I barking up the wrong tree, or it possible there is more than one tree to climb?....... then give me a bottom line too.

 

thanks, I thoroughly appreciate your aid in understanding all this.

Faith

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She is getting pex in two weeks.

 

 

Eileen,

I know this is not what you are asking here, but I have been curious about your status. I believe I recall your daughter was doing well at the beginning of school. Are you doing PEX to alleviate current symptoms or are you aggressively treating the condition in general?

 

Thanks and good luck with the procedure!

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She is doing really well right now. We started the process of scheduling pex when she was in a minor episode, and when we rec'd her Cam Kinase which was 161%. We do see glimpses of pandas stuff everyday, though, and I feel any little thing could put her into an exacerbation.

 

We are trying to be very aggressive- she has lost 6 of the last 9 months to pandas. Also, I think it will be easier to get through the procedure when she is not in a full blown episode.

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With IVIG, the baseline reset to 0 again.

 

based on your observation of behaviors or your understanding of IVIG?

 

Based solely on our observation of behavior of our child. We've been monitoring and plotting symptoms for the last 72 weeks. These symptoms for us were:

* contamination fears

* complex measurement rituals

* movement disorders (particularly poor handwriting and tremors)

* vocal tics

* raging and emotional lability

* lashing out and hitting behavior

* restrictive eating

* body image/morphology issues (in a 7 year old)

* OCD questioning and rituals

* social anxiety

* separation anxiety

 

The severity of these symptoms has episodes but the baseline kept creeping up over the year until we were at approximately 50% of the all time peak -- particularly noticable were the movement disorders, the vocal tic, social anxiety and the contamination fears.

 

Post IVIG (albeit the first 2 weeks were very concerning), the movement disorder, social anxiety and contamination fears are gone. We notice a slight vocal tic still but it is incredibly mild.

 

Regards,

 

Buster

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Faith, I understand your confusion. If I were in your shoes, (you'd say, "hey! who's this weird lady wearing my shoes?) I'd get the Cunningham blood work done. Although its not officially diagnostic, it will give you another piece of the puzzle.

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peglem, I just sent his bood sample in two days ago. I do want to arm myself with as much info as possible tho. I think somewhere I feel real guilty of not looking at this closer back when.

 

 

Faith

 

Buster, if your still there, what do you think of what I related above?

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Faith... I think there is a strong possibility your son is PANDAS. I agree with Peglem about getting the Cunningham tests done.

 

Response to a simple course of antibiotics can be tricky. Our dd didn't really respond to the 1st 3 antibiotics we used. She finally responded to Azith. (but not much improvement after the first 5 days which is the typical course).

 

Dr. Trifiletti (neurologist in NJ, wrote the paper with some Italians) wrote a paper that talks about a "chronic variant" of PANDAS (vs the acute episodes that Swedo discusses). He theorizes that chronic PANDAS may actually be more common than acute PANDAS.

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I agree the Cunningham blood work will give you some perspective.

 

Additionally, I got used to a baseline with my son. I say he's 130 percent better in categories because certain symptoms we became accustom too and thought it was 'just him'. The initial cough went on for so long we couldn't determine if it ever waned entirely in his first year of being sick.... again the baseline had changed for us throughout that year (we no longer heard the clearing of his throat). When the tics exploded this past July after being ill... I'm grateful he presented with TICS because I definitively knew something was wrong but I didn't know what. Had it only been OCD I might have missed the symptoms entirely and as he improved 'on his own' the baseline would have changed again and I would have attributed his behavior to just a 5 year old thing or his personality. Now that he is getting better there is an entirely new baseline. I'm realizing how sick he was for so much longer than I ever imagined.

 

I never thought the clearing of the throat would be gone. One time a teacher asked him how long he had the cough and his response was..... All my life!!! As I sit here today, I can officially say its gone. I'm forever grateful to the individuals that pointed me in the direction of PANDAS.

 

-Wendy

 

 

 

Faith, I understand your confusion. If I were in your shoes, (you'd say, "hey! who's this weird lady wearing my shoes?) I'd get the Cunningham blood work done. Although its not officially diagnostic, it will give you another piece of the puzzle.
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I agree and feel we are fortunate when there is a sudden onset to help with diagnoses.

 

Faith... I think there is a strong possibility your son is PANDAS. I agree with Peglem about getting the Cunningham tests done.

 

Response to a simple course of antibiotics can be tricky. Our dd didn't really respond to the 1st 3 antibiotics we used. She finally responded to Azith. (but not much improvement after the first 5 days which is the typical course).

 

Dr. Trifiletti (neurologist in NJ, wrote the paper with some Italians) wrote a paper that talks about a "chronic variant" of PANDAS (vs the acute episodes that Swedo discusses). He theorizes that chronic PANDAS may actually be more common than acute PANDAS.

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Breaks in skin, tooth extractions, dental work, ... all enable rapid invasion and infection since the protection of the epithilial cells is broken and the bacteria can get right into the blood stream and reproduce rapidly. In addition, the subsequent exposures to strep (or its exotoxins) seem to be much more severe and so the recommendation is for prophilaxis antibiotics for ARF and SC individuals.

 

Also, loose teeth (baby teeth coming out) and nose-picking (the pediatric rheumatologist we saw mentioned this one) can cause release of bacteria into the bloodstream.

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Just wanted to add my 2 cents: I have not read everyone's reply to this so sorry if I am repeating what someone has said. I asked Dr. K about my sons low titer levels. He basically said what Buster said. He believes that my son has had this a long time. Since he was close to 3. I do too as he has had bouts of tics and things since then and also several cases of strep around that time. He thinks that when kids have strep and PANDAS that long, their immune system quits mounting a response. Makes sense. Also, I have to wonder about the episodic course. I have always thought if a child gets hits hard enough or enough times (even if you don't realize he has had minor episodes prior) could his/her baseline change to continued symptoms? Saving Sammy child had some doctors say he did not have PANDAS due to continued symptoms, not episodic and yet he did have PANDAS.

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