Rough Week

[airial95]

Sorry - but it's been a rough week, and I just need to blow off some steam!!!

 

Let's start with the family - shall we??? My mother has been all of the map as to accepting PANDAS - from "boys will be boys" initially, to a full believer after a naked haywire pee festival at her house, slowly going back and fort to "nothing's really wrong with him, no one notices the tics and boys are just like that". On the phone with her the other day, I was talking about our travel arrangements up to Dr. B's office (she's a travel agent and making our plans) when I was hit AGAIN with the doubtin - why are we going so far for another doctor, he doesn't seem that bad to her, it's just too much etc... So I explain to her AGAIN the biology of it, the autoimmune response, attack on the brain, yada yada yada. Remember when I had strep all those times as a kid and was even hospitalized for it - they think it's related to why BOTH kids have it, etc... We need to treat aggressively so there's no long term OCD setting in, etc... Mind you - this isn't the first, and I'm sure not the last, time I've had to go over this with her. At that point - a light bulb goes off in her head about how anxious I was as a child and all the weird things I used to do (the only thing she told me that I remember was making my parents say goodnight to all my animals in my bed - them having to start over if they messed up a name, and waking them up to do it over again if one fell out of the bed - yes it's all OCD, I get that). She goes on and on about all of the axieties I used to have, wonders out loud if I had PANDAS too (duh - probably) and then says "and you're just fine - there's no OCD". REALLY LADY!!! I've been dx with OCD a couple of years ago and my college nickname was "Monica" from friends - not only was my apartment always spotless - but my friends would make great sport of moving things just a hair to see how long it took me to go move it back.

 

I was so angry at her for being dismissive - granted - my OCD is VERY mild compared to what it could be, and considering it revolves around how clean my house is - actually comes in handy to keep germs away from my kids, but to think that it's no big deal just frustated me.

 

Then - my daughter tested positive last week again for strep, so that's always fun. She's been our mild case so it's usually not a big deal (comparatively speaking that is) and it's like dealing with a hormonal teenager at 5. Well - this week her symptoms took a nose dive - bad. On Monday night she had a full on panic attack because she couldn't get her drawing right (nothing for school mind you - just drawing for "fun") It took me over an hour to calm her, and she went through at least 20 sheets of paper, just throwing everthing out - even pages that barely had a line on them - because they weren't right. On Tuesday morning, she had some massive school refusal - with a panic attack getting ready and a scene getting on the bus. Her teacher also said that she was very impulsive in class that day - unusual for her. Last night - we had the same freak out over drawing pictures again, and then she also flipped out because she couldn't drink anything unless it was out of her "princess cup" (a toddler cup she hasn't used in YEARS!!)

 

This morning has been better - and we've been giving her motrin regularly since the positive culture, it's just heartbreaking to see her take a turn for the worse. With my son it's all anger and rage, so it's almost a bit easier to detach because you're just trying not to react to it. With her, it's all emotional and tears so it just breaks your heart.

 

Sorry - I just had to vent, it's been a crazy week here, and my husband goes away again next week - which means inevitably my son will turn up positive again (he just finished a double header of Augmentin and rifampin yesterday - so if our math holds up - he'll test positive by next Wednesday!)

[LNN]

I'm so sorry you're in this place. Have no solutions to offer for your mom. But wanted to let you know I've had to deal with the drawing/perfect issues a lot. My daughter is a huge perfectionist and the "I'm No Good" Fairy is very very big for her. We tried inositol, which helped a little. We use ERP/CBT as much as we can (tho not in the middle of a meltdown - that only makes it worse). Abx have helped some but sometimes we deal with these things when no infection is part of the equation. Which is why I get so passionate about methylation - because for my daughter, there's something "foundational" that goes deeper than infection. Anyway, what has really, really helped her is tryptophan every day and tyrosine every other day. So just something to tuck away in case things go as predicted next week. You're right - in many ways rages are easier to manage than when they beat themselves up inside. Breaks your heart.

[SSS]

I'm so sorry--it has been incredibly hard here, too-- PV's your way--

 

I just have it add:

My very favorite (sarcasm!) is when I hear:

 

'Are you sure this isn't just a discipline issue?'

 

I tell you what, that comment right there, makes me want to SCREAM.

[fightingmom]

I'm so sorry--it has been incredibly hard here, too-- PV's your way--

 

I just have it add:

My very favorite (sarcasm!) is when I hear:

'Are you sure this isn't just a discipline issue?'

 

I tell you what, that comment right there, makes me want to SCREAM.

 

Makes me want to punch them, of course, then I would be 'violent' and a bad mom -- which would then lead to them suggesting my son's issues stem from my violence. LOL....so I don't punch people. Though, I often want to.

 

 

Airial, so sorry you are having such a rough time. I feel your pain.

Edited April 11, 2012 by fightingmom

[Stephanie2]

It's a marathon having two with pandas, but with your tenacity (and OCD heehee) you will find the right path. Keep on pluggin and you can always call me. I want to get another meeting together one of these days...

[Stephanie2]

Oh and I'm right there with you in terms of the "unbelievers" ugh! My mom finally became a believer when she watched me go into a sudden onset pandas episode myself. Her jaw was on the floor...haha! Luckily it was my very last one, Angelica put me on Eli's remedy. Woot!