Another Poll -- subclasses of PANDAS?

[Buster]

A couple questions for the new year...

 

Buster

[dcmom]

Buster- looks like our kids are the same. I am assuming my dd has an over active immune system. All of her bloodwork has come back perfect (although the one number we haven't done yet are strep pneumo titers). She has always been a healthy kid: no ear infections, not alot of strep, etc. We only did the strep titers once, about a month into antibiotic treatment- they were normal. Her cam kinase was 161 when she was coming out of an exacerbation. She has reacted to siblings and classmates with strep, losing a baby tooth, and H1N1. She has been helped dramatically with steroids.

 

What could this mean as far as treatment?

 

Eileen

[thereishope]

It won't let me vote at all since I don't have a response for the third question.

 

I can't answer the canary question because I have not been in the situation where a family member is +, but my PANDAS son is negative. So, I don't know how he reacts to exposure only.

 

The only time the siblings have been +, my PANDAS son was also +. I did find out all 3 of my kids are asymptomatic.

 

So, perhaps, you can add another option to that one? Maybe just "other (list below)"?

[Buster]

Well, learned something new... if I change the poll, the values get reset to zero but we can't revote. Sorry...

 

It won't let me vote at all since I don't have a response for the third question.

 

I can't answer the canary question because I have not been in the situation where a family member is +, but my PANDAS son is negative. So, I don't know how he reacts to exposure only.

 

The only time the siblings have been +, my PANDAS son was also +. I did find out all 3 of my kids are asymptomatic.

 

So, perhaps, you can add another option to that one? Maybe just "other (list below)"?

[Suzan]

In case we need the orig voters.... here's mine...

 

OCD symptoms

 

My child has had raised ASO or Anti-DNAse B at some point?

No

 

My child is a canary for strep in the household (i.e., behavior changes when someone has strep)

Yes

 

Susan

[ajcire]

Hmm... this is tough as far as symptoms because my son has shown mild ocd in the past, has some mild tics but I can tell when there is strep more on behavior if that makes sense.

[smartyjones]

i don't know if there will ever be a way to know, but i'm interested in the recent question raised to dr. T's post (maybe by EAmom) - if there are children who may have been category 1 but weren't 'caught' in time and had lowering of titers and negative cultures.

 

we were 'lucky' in that pandas was proposed to us fairly early in symptom onset - approx 2 months. he had both high titers and positive culture. had that one person not suggested it, we would have tried to treat him behaviorally for years! then what would the results been when we tested titers and culture?

 

looking back, there are specific situations and personality elements that were probably pandas related but all very manageable -- by us as parents 'knowing him', never needed to seek outside help even on consultation level. only in hindsight does it seem to relate.

[thereishope]

Sorry. I like to make things difficult. I'm surprised how many people don't culture other people in the house when their PANDAS child is sick, esp with a + strep test on the PANDAS child. Learn from me. I brought my family in every time my son was sick. That's how I found out 2 other kids had strep and were asymptomatic.

 

Well, learned something new... if I change the poll, the values get reset to zero but we can't revote. Sorry...

 

It won't let me vote at all since I don't have a response for the third question.

 

I can't answer the canary question because I have not been in the situation where a family member is +, but my PANDAS son is negative. So, I don't know how he reacts to exposure only.

 

The only time the siblings have been +, my PANDAS son was also +. I did find out all 3 of my kids are asymptomatic.

 

So, perhaps, you can add another option to that one? Maybe just "other (list below)"?

[smartyjones]

Sorry. I like to make things difficult. I'm surprised how many people don't culture other people in the house when their PANDAS child is sick, esp with a + strep test on the PANDAS child. Learn from me. I brought my family in every time my son was sick. That's how I found out 2 other kids had strep and were asymptomatic.

 

 

vickie - do your other two have any pandas symptoms?

[thereishope]

No, they don't. I do wonder if I didn't catch that strep infection in both of them so fast if things may have been different.

[michele]

We get both tics and compulsive/anxiety behaviors. He has tested positive to strep sometimes and other times is neg but gets symptoms with reexposure to strep. His titers were elevated at one time. I wonder if over time PANDAS becomes a mood disorder that won't improve? We used to see the waxing and waning more clearly but now it seems to always present.

 

No, they don't. I do wonder if I didn't catch that strep infection in both of them so fast if things may have been different.

[peglem]

I was one of the originals who was wiped as well...

 

The OCD symptoms are the most problematic for us, but have a lot of abnormal movements as well: tics and some stuff that is too bizarre to classify as tics.

 

My child has had raised ASO or Anti-DNAse B at some point?

No

 

My child is a canary for strep in the household (i.e., behavior changes when someone has strep)

I don't think so...she has always tested positive when the behaviors start, and my other children get typical symptoms when they have strep.

[Kayanne]

--mostly OCD

 

--did have elevated ASO and Anti-DNase titers

 

--I should add that I answered that "I never cultured siblings during an exercerbation" because she has only had one PANDAS episode so far, and it started when all of my kids had strep.

[harmony]

A couple questions for the new year...

 

Buster

Just wanted to elaborate more on my answers:

 

1) My son has both the tics and the OCD. The tics have been most frequent lately and takes the longer to go away completely. But the OCD is far more disruptive and disabling.

I answered "OCD"

 

2) He has not been tested for ASO and Anti DNase in many years. He was tested during his first exacerbation (1 week after positive culture) they came back negative.

I answered "never been tested" because he was never tested in the correct time range.

 

3) No one in the family has ever had strep when he did not. He always gets it!! 3 times in last 3 1/2 months.

 

Never mind- I was going to answer these questions- but when I tried to go back to answer them- it said "that I already took the poll" ????????

[Buster]

Yup, the poll system leaves lots of room for improvement...

 

I'll try this again with a better set of questions... after we get more responses in.

 

Buster

 

Never mind- I was going to answer these questions- but when I tried to go back to answer them- it said "that I already took the poll" ????????