Is this possible or was I being neurotic?

[AmySLP]

Strep galore in my daughter's school last 2 weeks. We increased her daily ABX to twice daily (Aug 400mg) last week. She's been generally good. Last night at Girl Scouts, which takes place in the school library, my daughter started having verbal, facial tics and repetitive hand movements. Another girl developed a hoarse voice apparently during the school day per her mother. I mentioned that she should be tested for strep b/c of all the strep in the school, but she said her daughter doesn't typically get that symptom with strep (is anything typical about strep presentation??) Of course, I explained Allison's PANDAS, which I feel I've done in this group of moms before. Couldn't help the whole hour watching my PANDAS daughter move and tic during that time & wonder if that child has strep or if that library is full of it. When we got home, I did not see even one tic or movement. Is it possible to have an increase in symptoms just in the presence of someone with strep for one hour?

[airial95]

Yes!!! My son is very sensitive to exposure, if he is around someone with strep he will react. He also typically reacts before the person with strep even has any physical symptoms. Unfortunately, once exposed, his "episode" lasts about 3-4 days or so, but it's always pretty short, and not as severe as when he has full blown strep.

 

So no - you're not paranoid!!

[SarahJane]

Even Swedo acknowledged that reaction to exposure can be quick. I think it's in her Autism One talk. She says hours, but I figure it would depend on susceptibility & sensitivity of the child & the proximity to the infection. It helped me understand how I could send my undx'd child to public school in a perfectly fine state & get a phone call around noon about issues.

 

P.S. Aren't all us PANDAS Parents neurotic to a degree? I thought it was part of our charm & allure. LOL!

[emmalily]

Strep galore in my daughter's school last 2 weeks. We increased her daily ABX to twice daily (Aug 400mg) last week. She's been generally good. Last night at Girl Scouts, which takes place in the school library, my daughter started having verbal, facial tics and repetitive hand movements. Another girl developed a hoarse voice apparently during the school day per her mother. I mentioned that she should be tested for strep b/c of all the strep in the school, but she said her daughter doesn't typically get that symptom with strep (is anything typical about strep presentation??) Of course, I explained Allison's PANDAS, which I feel I've done in this group of moms before. Couldn't help the whole hour watching my PANDAS daughter move and tic during that time & wonder if that child has strep or if that library is full of it. When we got home, I did not see even one tic or movement. Is it possible to have an increase in symptoms just in the presence of someone with strep for one hour?

 

Hi, I was just wondering if it was possible that there was something specific to the library she was reacting to. A cleaner used in there, high overhead flourescent lights, did they have any snacks, were they working on crafts with something like stinky permanent markers etc? I think it's been said on here lots of times that non-bacterial things can aggravate symptoms once PANDAS is already underway. For instance, while I was in the middle of my big PANDAS exacerbation there was one classroom in my high school where I always felt worse in (happend to be a basement classroom, very dusty, moldy, and very bad air) and in the high school library there were skylights and overhead flourescents that made a weird mixture of light that often made symptoms worse for me while I was in there. Just throwing it out there, glad it only lasted her an hour!

[Ann280]

I have been wondering this myself..Since my daughter rides in a carpool everyday with another girl whos family has had strep many times this year..The girls sister had strep confirmed two weeks ago..a week and a half ago my daughter has a major episode..but it wasn't the girl in the car with her that had the strep it was her sister..The family in general has major strep issues...can someone be a carrier to strep and infect a pandas kid?

[airial95]

I have been wondering this myself..Since my daughter rides in a carpool everyday with another girl whos family has had strep many times this year..The girls sister had strep confirmed two weeks ago..a week and a half ago my daughter has a major episode..but it wasn't the girl in the car with her that had the strep it was her sister..The family in general has major strep issues...can someone be a carrier to strep and infect a pandas kid?

 

Yep carriers can infect a PANDAS kid. Also, even though the child in the car didn't have strep, her sister did, which means she was exposed. She may have had the bacteria at one point but her immune system successfully fought it off, so she didn't get sick, but that alone would still expose your daughter. The timing of your daughter's episode and the other childs strep infection would lead me to believe she was reacting to the exposure.

 

When we were tracking my sons symptoms faithfully every day, we noticed very strong exposure pattern, which was why our recovery was taking so long.

[AmySLP]

I do feel so much better knowing that this is possible, b/c she is doing quite well since that evening. I started to get thinking about how often the library tables are wiped down, figuring that every child in the school sits there once during the week. No crafts or anything like that at GS that night. Don't know yet if this girl had strep, but did notice her mom picking her up from school the very next day, so I can't imagine she saw a doctor.

 

Thanks for your input!

 

Amy

[SSS]

I have been wondering this myself..Since my daughter rides in a carpool everyday with another girl whos family has had strep many times this year..The girls sister had strep confirmed two weeks ago..a week and a half ago my daughter has a major episode..but it wasn't the girl in the car with her that had the strep it was her sister..The family in general has major strep issues...can someone be a carrier to strep and infect a pandas kid?

 

Yep carriers can infect a PANDAS kid. Also, even though the child in the car didn't have strep, her sister did, which means she was exposed. She may have had the bacteria at one point but her immune system successfully fought it off, so she didn't get sick, but that alone would still expose your daughter. The timing of your daughter's episode and the other childs strep infection would lead me to believe she was reacting to the exposure.

 

When we were tracking my sons symptoms faithfully every day, we noticed very strong exposure pattern, which was why our recovery was taking so long.

 

 

Hi- may I ask how you dealt with exposure exaberation? Did you keep your son somewhat sheltered until he got stronger? Do you still have exposure issues?

My dd6 was in class all last week and the teacher says 7, I got reports of 4, kids dropped out with strep. I kept my dd6 going, she was feeling great, on daily antibx., and Friday night BAM! we are in full blown PANDAS, back to square 1, it is not remitting almost a week later. She did not contact the actual infection, it was the exposure.

How are we suppose to live like this? (magic question, right?)

Thanks,

Sarah

[peglem]

Libraries are notorious for dustmites!

[airial95]

How are we suppose to live like this?

 

If I had the answer to this one I wouldn't be working right now!!!

 

We haven't kept him out of school during an exposure as of yet - but it's partly because of the pattern we've noticed. He tends to react 2-3 days before we even get the notification of strep in the classroom. So he's reacting IMMEDIATELY on encountering the bacteria, by the time we get notified, he's already 2-3 days into the exacerbation, and we've noticed that exposures ride out fairly quickly for us (usually 5 days max - if it's longer than that, we take him in for a swab.) We were able to track this pattern pretty clearly when we were charting symptoms daily (I'm only doing it weekly now since he's about 85%) When we see a spike in behavior now, we wait until day 3 to take him in to see if we get a notification - no notification, we go in to the Dr., if we get a notification, we wait another day or so before going in.

 

He's on full strengh abx now, and most of our exposure difficulties were when he was on the proph doseage. We talked about bumping him back up to full dose long term, and ultimately that's where we are now (although I did resist a bit - we haven't had any gut issues from the abx thankfully and I was reluctant to invite trouble if it was just a couple of days of stress at a time!)

 

My husband and I have had the homeschool/keep him out type discussions quite a bit, and we're both firm believers that while we may need to keep him out for a few days during full blown exacerbations when he has strep, if we kept him home everytime someone else was sick he'd hardly go to school! We've enrolled him in a special ed pre-K that's working on helping him identify the anxiety and work through it without outbursts and such, and we have an IEP in place that will allow him a place/time to "cool off" if he feels overwhelmed (it works great at home) - and it's working well at school. We've had 2 exposures at his new school, and while we saw a slight increase in behaviors at home and increased OCD at school, he held it together really well at school. So in our eyes, it made sense to send him when he was exacerbating with exposure because that will give the opportunity to practice the skills we're trying to teach him to get ready for Kindergarden.

 

But I think it's different for each child and family, depending on what the child (and parents) can handle. Even with the massive seperation anxiety we had, my son has always loved going to daycare/school. So it would likely be worse for us if we tried to keep him home as a precaution. But we also have a very determined little boy who tells us all the time how hard he's working to be better and "fix his brain".

[SSS]

Thank you for sharing your story, your son sounds like he is doing wonderful :-)

Truthfully, we've only had this pandas dx for 5 months (!) but she had been chronic for a long time.

We are looking at doing 1 more HD-IVIG, maybe next week, 6-7 weeks out from the 1st one we did, and then I am going to pull her out of Kindergarten after, she missing the last 5 weeks of the year.

It breaks my heart, like your son, major separation anxiety, but she pulled herself together for that 3 1/2 hour class, and loved it- it has been so good for her.

I'm at the point where I have to SEE this, learn her particular condition better- so we keep her home for 3 1/2 months until 1st grade starts, and see what it brings.

[Stephanie2]

I have always wondered if I "believe" in the whole microbial strep exposure thing, meaning the kid reacts without actually contracting strep. Well, the experiences in my house in the last 7 weeks have certainly confirmed that this is very real.

 

Both of my boys are pandas. My 3yo had strep untreated (long story) for a total of 5 weeks. The whole time this was going on, my 6yo was NOT on antibiotics (we have been doing homeopathy). There were 24 hour periods here and there where the following would happen: mild baby talk, mild fears, stomach aches and leg cramps and a mild cough tic. These are all his "early" warning signs that strep is in the house or he has an infection). The most amazing thing is that he would come home from school an within about an hour of being around his brother, these symptoms would crop up, one at a time. And by the end of the night he had all of them. But the next day they would be gone. Like I said this happened about 3 or 4 times. At one point about 3 weeks into the exposure, I was so darn curious about this, I took him into the ped to have a strep test done. Both the rapid and 40 hour culture were negative. He never did get infected. Yay for his homeopathic remedy, but my point to this is that it was so obvious that he was reacting to his brother (and me, I think I also had it for a few weeks there).

 

In the past, these types of "reactions" would be almost as severe as the infection itself.

[Ann280]

I have been wondering this myself..Since my daughter rides in a carpool everyday with another girl whos family has had strep many times this year..The girls sister had strep confirmed two weeks ago..a week and a half ago my daughter has a major episode..but it wasn't the girl in the car with her that had the strep it was her sister..The family in general has major strep issues...can someone be a carrier to strep and infect a pandas kid?

 

Yep carriers can infect a PANDAS kid. Also, even though the child in the car didn't have strep, her sister did, which means she was exposed. She may have had the bacteria at one point but her immune system successfully fought it off, so she didn't get sick, but that alone would still expose your daughter. The timing of your daughter's episode and the other childs strep infection would lead me to believe she was reacting to the exposure.

 

When we were tracking my sons symptoms faithfully every day, we noticed very strong exposure pattern, which was why our recovery was taking so long.

So then what do I do...this scares me terribly..Today I found out that 4 kids in my daughters class of 11 our out sick. then one today in my sons class. My daughter is on the zith right now but is this just a waiting game after??Wait until your child has an episode?

[AmySLP]

Ann- this is why I believe the prophylactic ABX are critical. For us, my daughter has a dose for this reason, and then, if I get a strep notice, or she ramps up in symptoms, I increase the dose to twice daily for a few days. My pediatrician is on board with this and being local it's easy to call him and get a refill, if I run short for the month b/c I've had to do this. We see Dr. B as well, every 8 weeks or so, and I always ask for an extra RX. just to have. I would imagine that others adjust the ABX as well. My daughter is doing well on Augmentin currently. But this seems to be really child specific, as my little one is doing better on Zith.

 

The roller coaster of this is the hardest part. Nothing is predictable and the ups and downs never get easier, maybe a little less neurotic feeling, but never easier. Hang in there-seems like spring here in the Northeast is always when strep is most rampant.

 

Amy

[Ann280]

Ann- this is why I believe the prophylactic ABX are critical. For us, my daughter has a dose for this reason, and then, if I get a strep notice, or she ramps up in symptoms, I increase the dose to twice daily for a few days. My pediatrician is on board with this and being local it's easy to call him and get a refill, if I run short for the month b/c I've had to do this. We see Dr. B as well, every 8 weeks or so, and I always ask for an extra RX. just to have. I would imagine that others adjust the ABX as well. My daughter is doing well on Augmentin currently. But this seems to be really child specific, as my little one is doing better on Zith.

 

The roller coaster of this is the hardest part. Nothing is predictable and the ups and downs never get easier, maybe a little less neurotic feeling, but never easier. Hang in there-seems like spring here in the Northeast is always when strep is most rampant.

 

Amy

Thank you Amy...