Exacerbation due to exposure

[KaraM]

Hi,

 

We think my son may be carrying strep and that this may be causing my PANDAS daughter to decline.

Do exposure symptoms typically only occur when the carrier is around?

It seems things were worse over the weekend when they were together a lot.

Then, Monday at school and home when he wasn't around, she did well. Last night when my son and I picked her up from my sister's house, she fell apart - contamination fears and a new thing for us - either saying or fear of saying bad words. She was an emotional wreck, crying that OCD was back, that she was never going to be able to get rid of it and that she didn't want it to be like second grade again. Can it really be that quick and intense of a response or am I making this all up in my head?

 

She's been doing well for several months. In some ways I feel like I'm being punished for bragging that she's been operating at 95%? (I wasn't trying to brag - just give others hope...) I need some now.

 

Thanks,

Kara

 

 

[LNN]

Oh Kara, I am so sorry!

When my son slipped from known exposures, his symptoms became independent from how much time he spent with his sister (the one who exposed him). It was like the fuse was lit and the reaction was set in motion. She stopped being a factor. The only thing that stopped the reaction was a prednisone taper (and of course getting my daughter healthy). But take this with a grain of salt. DS likely had lyme so it's hard to say if the "exposure" was really what set him off or if it was part of a cycle. As you know, winter in New England brings back-to-back colds, so illness exposure could have easily coincided with some sort of tick-borne illness cycle.

 

I know how hard last winter was on your daughter and your family. Try to remember that back then, you didn't have the doctors and ERP tools and knowledge you have now. It snuck up on you and had months to overwhelm your daughter. That won't happen this year. You are catching whatever it is early. Sucks to have to go to battle again, but you are savvy now.

 

Please let me know whenever you need a shoulder so I can pay you back

[butterflymom]

=

Edited February 3, 2016 by tampicc

[airial95]

My son is very sensitive to exposure. In a way, that's our bigger battle, everytime we're making great strides, someone ELSE gets strep and sends us backwards again. In our case, it doesn't matter how much time he's spent with the carrier, once exposed the reaction starts, and the reaction is similar (but not quite) in intensity to a full blown exacerbation. That's the bad news.

 

The good news is, with us, the worst never lasts more than 3-4 days. Often, he's already coming down off of the worst of it when we get the call from school, friend, whoever saying that their kid woke up with a fever that day and it's strep, etc... He's truly the canary in the coal mine. After the really bad 3-4 days, we usually see a rapid improvement, and within 1-2 weeks are back to where ever we were before the exposure.

 

You can see how this pattern is a nightmare, he seems to be exposed constantly, and we're noticing he reacts (although not a severely) to other things than just strep.

 

It's during exposures that we use ibuprofen the most, it works well for us. We almost always get a rapid culture done too, just to be sure.

 

In our case, at least half of his exposures this year were from his sister! Hopefully she'll bounce back quickly once you clear up your son's strep.

[Megs_Mom]

Oh, Kara, I am so sorry! Everyone has their own rules here about when to panic, so I will share ours for what they are worth. They have served us well so far, but we have been very lucky, with only exposures or respiratory issues, no actual strep in the last 18 months. All blips have lasted no more than a week.

 

First of all she knows ERP, so calmly tell her that this will happen, but it will NOT be like second grade. Let her know u are a team and she has to do her part as well. Keeping her from panicking will really help, as it is a bit of a cycle, where stress levels can increase symptoms, then symptoms increase stress. ERP seems counterintuitive, as it raises short term stress, but it really works. So that can be her part and give her some control back.

 

We use the 3 day rule. If OCD starts to increase, we hit day 1-3 with motrin at full dose for her age, around the clock. If a respiratory illness, we add benedryl. Often, this is all that is needed. However if symptoms go above a 5 on our scale, we also increase to full strength azith. If this calms things, we move to a lower dose of motrin on day 4, and slowly come off. If symptoms are still bad on day 4, then we call our docs, set up appts, move to prednisone, and full strength abx.

 

We always keep in mind that the bigger guns of ivig are there, and that we have docs ready to help us.

 

The first 3 times this happened, I panicked, Meg panicked, there was a lot of fear in our house. Now we are pretty calm about it, and say our prayers that this continues to work. Hope this will be a short blip, not an exacerbation. If it seems really bad, call for the doc appt today. You can always cancel.....

Edited December 10, 2010 by Meg's Mom

[KaraM]

Thanks, Everyone, for your replies.

Wednesday night was the worst. Yesterday was better.

We have both kids' anuual physicals scheduled for Wednesday. The pediatrician said he won't prescribe anything for my non_PANDAS possibly strep carrying son until then. He also wants to see Dr. Bouboulis' notes from my PANDAS dd8's three visits. I emailed Dr. B asking for that yesterday - but I know they are closed on Fridays. I also know how busy that office is and how difficult it can be to get attention for requests like this...I hate to say it, but I am praying that my son's blood tests show titers even slightly higher than they have been, since that would show put him in the positive category...(and would show direction...).

 

Meg's mom, your approach sound great. I think it is helpful to have a system in place like that.

 

LLM - you're always there for me. Thanks. You're right, we know what to look for and can hopfully stop it before it goes too far.

 

Airial95 and Tampicc - thanks for your stories and giving me hope instead of despair.

 

Kara

[Megs_Mom]

she fell apart - contamination fears and a new thing for us - either saying or fear of saying bad words.

 

By the way, this is called "scrupulosity OCD" - our daughter was often "afraid she would cheat" or "afraid she may have said something mean to someone". They know they did not, or will not, but doubt themselves around areas of kindness, religion or respect for authority. It's quite common . We know another little girl who kept feeling like she would give people "the finger". The ERP for this is sort of easy (do it at home) - have her tell you the bad words that she might say, and then make up a little song that uses them. Sing the song with your daughter. You can also just let her say them, yell them, sing them - it will quickly be boring, she will likely have fun, and the ERP will be done. You can set a 15 minute period aside for this each day, until it is dull - call it the "cussing time" or soemthing funny & then reward her for cussing. She will likely be astonished that you will reward her for this, and that alone will knock the anxiety down. Often OCD attacks whatever is "forbidden" to a child.

[KaraM]

Yes, I recognized it as an OCD symptom from all the OCD reading I've done. But I was wondering how best to handle it with ERP - so your suggestion was very welcome. So far it hasn't happened again. But if it does, I'll know what do do.

 

Coincidentally, I was reviewing Dr. K's website today and came across a word I didn't know the meaning of - "Coprolalia" - listed as a symtpom of PANDAS. So I looked it up and what do you know - it's this blurting out of inappropriate words.

[Megs_Mom]

Yes, I recognized it as an OCD symptom from all the OCD reading I've done. But I was wondering how best to handle it with ERP - so your suggestion was very welcome. So far it hasn't happened again. But if it does, I'll know what do do.

 

Coincidentally, I was reviewing Dr. K's website today and came across a word I didn't know the meaning of - "Coprolalia" - listed as a symtpom of PANDAS. So I looked it up and what do you know - it's this blurting out of inappropriate words.

 

Is she actually saying the words?

[KaraM]

The other night in the car when she was crying, she said "I hate it when I cry, it makes me want to say bad words."

Then she said "boobie" and "butt crack"

 

(Lovely, I know... I guess it could be worse)

 

 

Is she actually saying the words?