I think I may have gotten my girl back from...

tiredmommy

Well-Known Member
the brink. Duckie went downhill fast about 4 weeks ago (Valentine's Day). She was wound up: not sleeping well, not eating well, her mind was chaotic, very stressed about everything. Grinding her teeth. Very forgetful. Locked onto every little slight from the other kids at school, she couldn't let anything go. So clingy! Pale, with sunken eyes but no fever and her peak flow numbers have been good. I even noticed her viola playing went downhill. It was weird... like a switch was thrown.

She spent a good part of winter break grounded and that normally helps her to do better (life is much simpler when you're stuck at home with mom & dad). But... she continued to struggle into the next week at school.

Things came to a head that Thursday when she had an epic meltdown in class, crying for well over an hour for being put on red for getting caught talking to the same girl twice that day. She steadfastly refused to admit that she was talking despite two different teachers independently reporting it to her classroom teacher (science & art). Her teacher attempted to calm her down and reminded her that the entire class had been warned that she was tightening discipline and it wasn't the end of the world to lose recess (the punishment for being on red). That's when Duckie told her that she was afraid of what I would do to her when she got home (for the record: the "punishment" would be a lecture on personal responsibility and respecting her teachers and the rules... she already was punished by losing recess). She was becoming hysterical so her teacher called for the school counselor but canceled the call when she saw me walking down the hall with another class (I was working in the school that day). I spoke to the teacher (who assured me that she knew Duckie wasn't serious that I would hurt her... thank goodness!) and had me talk to her. Duckie wanted me to take her home then. I felt horrible but I made her stay the rest of the day and go to her extracurricular too because I didn't want to reward her for her outburst because, basically, all learning stopped in that classroom during her meltdown. The counselor spoke to her the next morning and felt, like me, that she was trying to get out of trouble and just got in over her head. It took husband and I well over an hour to get her to admit that she had been talking too and that she had to be responsible for her behavior and take the consequences for her behavior. She was still grounded from play dates, etc but we felt we needed to tack something on because on the over-the-top meltdown and accusation against me so she lost electronics, tv, etc.

We also pointed out that everything had changed that day. She had never been viewed as a kid with problems at school before this but now her teacher, classmates and the counselor will be concerned about this happening again. That was the harshest consequence she would be facing for a long time to come.

So, Duckie is a smart girl and, normally, she would have moved heaven and earth to do well after all this. But while her behavior/attitudes improved dramatically, she was still off. husband left to go out of town last Tuesday and I was worried... she'd been so difficult to handle that I really didn't want to be a single parent for the next 2 days. She and I went out to dinner on Tuesday and she developed a very fine, lacy red rash on her face before we left the restaurant. She had a sore throat but no pus on her tonsils/throat. Three of her friends had recently been treated for strep during the last month so I called off work for Wednesday and took her the doctor where the fast test came back negative. The doctor decided to send out another swab and start her on amoxi because of the likelihood that she had been exposed. Unfortunately I will never know the results of the lab test since the lab lost the sample.

But... she started the amoxi on Wednesday afternoon and seemed a little calmer on Thursday and even better yesterday. And today... I had my daughter back. Sure she argued and fussed at me a bit... but it was to a typical level for an only child tween girl. So now, Duckie has had strep three times in her life (assuming that's what is going on now). Two out of three times did not test positive on the quick test (85% accurate) and she only had a fever two out of three times. She has never had the white patches/pus. The one time she had the fever was in third grade during the swine flu outbreak in October and her behavior was, well, normal for a sick kid. A little clingy, kinda irritable, very tired. The other two times.... she also had a spike in behavior issues.

I'm not saying that Duckie has PANDAS, but I am amazed at what a complicated person she is.
 
H

HaoZi

Guest
Glad she's feeling better and coming back to herself. When Kiddo was sick earlier this year I had bunch of those Wisps toss-away toothbrushes that I'd gotten from woot and had her use those while she was sick and gave her a new toothbrush once I was sure she was well again.
 

svengandhi

Well-Known Member
My oldest boy does have PANDAS (confirmed by testing at NIMH years ago). He NEVER had a pus-filled throat when he had an episode. Typically, he would get very whiny and clingy and just not himself. He would also get very Obsessive Compulsive Disorder (OCD)-like behaviors - imagine a first grade boy washing his hands 39 times in a row and crying because even though mommy washed her hands after changing easy child's diaper, Mommy did not BLEACH her hands or the baby's bottom. Put him amoxi and within 2 days, he's back to normal.

We used to microwave his toothbrush and then put it in the dishwasher after he was on amoxi for 2 days. For three winters, we kept him on amoxi prophylatically - 1 low dose pill a day and it reduced his episodes.

After 2nd grade, we had his tonsils removed at the rec of difficult child's ENT and that helped even more. The doctor diagnosis'ed him with tonsilitis because insurance wouldn't cover removal of tonsils to treat strep but after he read all the stuff we showed him on PANDAS, he felt that it would help and he was right. Does Duckie have tonsils? We didn't have his adenoids removed, though we did have difficult child's (though not HIS tonsils).

For years, our pediatrician would call in amoxi if we asked for it. He died last year but oldest boy is in his 20's now and seems to have outgrown PANDAS. By the way, we gave every teacher and school nurse a heads up at the beginning of every year and asked for a call home if any kid in his class or grade (common lunch and recess) was diagnosis'ed with strep.

Good luck.
 

busywend

Well-Known Member
Funny, my difficult child never tested positive for strep until just last year. She was horrible at getting swabbed and I usually figured they never could get to where they needed to in her mouth to get a good test. She acted out more when I suspected strep, too.

Glad she is better now!
 

JJJ

Active Member
All of my difficult children have the same reaction to strep. They have never been diagnosis with PANDAS but it wouldn't surprise me.
 

tiredmommy

Well-Known Member
She's still a little wonky... her sensory integration just isn't right. She's loud and her voice is flat and she's holding her throat a lot. We went to the Sabres game this evening and she ended up shrinking into her seat a little because it was a little too loud, crowded, and brightly lit. The difference now is that she is recognizing what is happening to her so I can help her. She ended up squeezing her stress ball and felt a lot better.
 

svengandhi

Well-Known Member
When my son was in his PANDAS phases, sounds, etc. would set him off. The lights would sometimes give him a headache. A sports game (I've heard of the Sabres but I don't know what they play) can also be very noisy and tumultuous. I'm glad the stress ball helped.
 
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