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60 seconds to ruin a good day


SarahJane

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We are currently undx'd PANDAS (ds/6), but I'm wondering if others go thru this same scenario. You can be having a good day, out & about (yes, in public...the day's that good--fit for public consumption, I say), and you think things are turning a corner (and that you're slightly crazy to think there was even a problem), and then BAM! Your kid does something that you totally did not see coming (full tantrum, runs from you, does something to another kid, refuses to do a simple request--like leave when you've given ample warning, etc...). The whole day comes down to that 60 seconds & his bad "choice". No amount of reasoning can get them to understand what they've done (while you're sitting in the car having gotten out of everyone's eye ASAP & then rehashing everything when you get home). In fact, reasoning makes it worse & makes you madder because they get more defiant/obstinate as time goes on. By the end of it, you've spent hours over that 60 seconds with increasing punishments, secondguessing yourself, feeling like an awful parent, knowing that all your friends would've handled it better with their kids (as if they've ever had to worry about this stuff), wondering if he is just a brat choosing to do these things, and all the other stuff that runs thru your mind. And what's worse, is you never know when it's going to happen, so you're blind-sided every time. And, is the stuff always so bad OR is it that we deal with so much stuff at home that we are mortified when others see it tho' sometimes it's actually age-appropriate? Know what I'm talking about? Can you relate?

 

Let me say also THANK YOU to all the posters out there. This board is invaluable! Have an appointment this week to talk to another dr (not a specialist yet...local dr to see if they see what I see or want to only focus on behaviors vs. cause). Am working to organize the medical records so it's easier to see than a jumble of pages in a chart. I think that a lot of the behaviors we saw prior to these dx'd strep cases were likely PANDAS too as many cases of sinusitis & "viral" pharyngitis earlier w/o strep testing, but we were put on a different path that does not fit due to a speech delay. But even if only recent history is considered, it's still compelling (to me anyway). Strep in late Dec/major behavior changes at home & really in school in Feb - May. Good summer. Strep dx'd in Sept but likely hit in Aug (thought it was a cold)...took him in because the old behaviors came back & this time with obvious OCD (which abx got rid of in about 5-6 days but still some rages/behaviors continued--2nd strep test negative on day 9 of abx). Titers "negative" (after I got dr to run them because swab was negative & it was kinda the condition I had to go with to get abx/Omnicef while culture grew--yes, it was positive). Did get referral to pediatric neurologist & psychiatrist tho in a "here make your own appt & let us know what happens way" (so you know I've been written off there). And I brought PANDAS up in May when I found it & it fit...was told behaviors had to be sudden onset with the strep & I had an anxiety dx, so I went with that. It seemed sudden to me...maybe not immediate but sudden. But when 2nd strep hit with behaviors, I started banging the drum again. Again told the behaviors had to be sudden onset. Is that sudden from when they got dx'd or when they were getting sick & everything was getting ready to hit or sudden in that after the abx is done it's still not gone so it keeps going until behaviors appear? I think sometimes the dr's want the kid to start OCD/rages/etc... as soon as they walk back in with a positive test...even then they'd probably not believe ya. Ahem. I know. I'm preaching to the choir. Sometimes the spirit just moves me when I get on this topic. ;)

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Welcome to the forum!!! :D <3

& preach to the choir all you want, girl. That's what we're here for.

 

I have to go to bed but I hate posting something & getting no replies so I just wanted to say Hello! I hope you get to know all of us on the forum. As they said in Alice in Wonderland, "We're all mad here." ...Some of us moreso than other, hahah. Goodnight SarahJane! :)

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Welcome. Yes, I can so relate to how quickly a good day can go bad. And I've got to tell you, this "sudden onset" requirement drives me nuts. In some ways, I don't know when it began for my daughter, because I can now point to little things that may or may not have been minor OCD/PANDAS . On the other hand, it all slapped me in the face one snowy morning last December when she couldn't get dressed because she was afraid her clothes were contaminated and would make her sick. However, that had been building slowly over the course of a few months. I'm thinking it started in the late summer/early fall with lots of questions about the swine flu (so I ask myself, was it the questioning that was sudden onset); then she started washing her hands like crazy (did that just happen one day??? - I don't know)...Then individual articles of clothing were "dirty" so she couldn't wear them. Our pediatrician initially didn't test her for strep when we brought her in for OCD because his understanding was it had to occur within 6 months of a strep infection. There is so much misunderstanding/lack of knowledge about how PANDAS can present.

 

If I compare her from one year to the next, I could say she was a different kid. But I can not pin point a day, week, or month when it all began.

 

I'm just remembering now, but Buster did a survey a couple of months ago asking about "sudden onset." I'll find the thread and link to it in another post. If I remember correctly, the "sudden onset" thing is definitely not universal.

 

Kara

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I hear ya! That is the story of our life. My favorite time when it happens is when we're checking out at the grocery store - items already half scanned - trapped in the line. It's fantastic - especially when the woman behind you is looking at you like the worst parent in the world because you can't control your kid.

 

I think ALL of us have had that split second that ruins the day...

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I completely understand. I feel like I gage every day as far as if it's good, bad or awful and one explosion or meltdown can turn a good one into a bad one. It's interesting to reflect back though. In the beginnning I thought, "Hmmm, how will I know when abx aren't enough? When to try steroids?" Amazing how after spending time going thru the roller coaster of the disorder, you actually start to benchmark days, symptoms, etc. and you know what's a so so day and what is "crisis mode". It was actually pretty easy to say, "Let's try steroids." because we were desperate. Now it's looking easier for me to say, "Let's try IVIg."--when I used to think that hopefully wouldn't happen. I think my emotions run more ramped than my PANDAS kids some days--sad and mad this happened, wonder if I am the crazy one when I've actually felt rather sane all my life :), impatient b/c why aren't we farther in treatment/hopefully recovery of some sort and I try really hard to be grateful and count blessings even though some days it's really hard. Thank goodness we see Dr. B again tomorrow to go over lab results b/c I'm so drained...like most others on this forum.

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