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So I clearly see an episodic course to our pandas when we have an illness, that one is a no brainer. But I have always felt that on any given day, or given week, my son (6) can seem like he is clearly out of sorts. I thought on a daily basis it might be due to food or blood sugar--which led us to discovering his very low vit d level, and we are looking into some issues about absorption, etc.

 

However--i can tell when he wakes up if it will be an "off" day--there are days when he is just out of sorts--won't listen, no impulse control, bossy--we just had one of those days. Our tutor (we homeschool) said he was acting odd--not necessarily sick odd, but bossing her around, being difficult, not being able to focus...out of the blue they were making cookies and he bopped her in the face--not in a mean way, but just like it occurred to him to do it and he had no control over it. She said he was even hitting himself in the face. He ripped his worksheets during school, etc.

 

When I got home I totally saw what she meant--he grabbed jello out of the fridge and poured it into his mouth with no spoon, getting it all over himself, his face, the floor...and when i told him not to go near the couch he just ran to it and jumped on it. I took him to his room and he was just so agitated! within 5-10 minutes he passed out.

 

It almost seemed manic to me (but we don't see any depressive, which makes me not think its bipolar). Like I said--we can have just one episode like this in a day and then he'll be fine, or days like this when it is ongoing, or weeks with no problems at all. We have tried modifying the behavior, discussing it, punishment, you name it--and it just happens again--which makes me think he doesn't have any control over much of it.

 

I am wondering if other PANDAS kids have this behavior pattern? It's so hard on all of us. It's like so many other things we experience--he has anxiety, but usually as a product of his pandas. he has adhd symptoms, but they seem to wrap into his pandas. is it all related?

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My DD had this as well. Extreme swings, like flash powder - explosions with no warning. Non-stop talking. Oddly "too" happy then wickedly defiant, even when the consequence would be something that would flip her out. Very emotional. It was like watching someone lose their mind right in front of you - and then become completely sane again 30 minutes later - like a light switch. It was always worse in the winter, worse if she were sick. She would respond to abx but not entirely.

 

We found a D3 deficiency and that may have helped. But what also helped was that we found borderline pyroulria (a zinc/B6 deficiency) and high copper.(low zinc often leads to high copper and vice versa). Google "high copper personality" and you'll see our kids described. Copper toxicity can produce bi-polarish mood swings with rapid cycling. We didn't see depression per se but we did see negative self thoughts that not quite OCD - I'm bad, I'm not good at anything, no one loves me...that would last maybe 20 minutes then go away and she'd see them as unrealistic thoughts.

 

We now supplement with D3, zinc/B6 and tryptophan. All her negative behaviors are gone and she's been very stable for several weeks now. We may still have a gut issue to resolve but this was a major breakthrough for us.

 

*if you do find high copper and you supplement with zinc to naturally chelate, or you use a copper chelator like EDTA, there may be a few weeks of "worse before better" as the imbalance corrects itself.

 

Yeast would be another thing to consider.

Edited by LLM
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That describes my DS too. Often normal, but he's manic far too frequently with rages that come on suddenly and leave almost as suddenly.

 

What LLM said is really interesting to me. We just got blood work results from Dr B, and his Vitamin D and calcium are low (which is weird, because the kid drinks an incredible amount of milk every day). His IGG1 was low, too. I know his copper was normal, but I don't know about zinc/B6. We'll have to get that checked. We won't see Dr. B again until the end of this month, and we're interested in hearing what he has to say about the abnormal blood tests and finding out what supplements we should add.

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YES!!! You are describing my son's behavior exactly. There are days when I can tell withinthe first half an hour of him waking up that it is going to be "one of those days" In fact yesterday was one of them. It was like he simply could not control himself. No matter how much I talked to him, warned him etc....He was so bossy with his sister and defiant with me. Hoping that tomorrow will be a better day!!!

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  • 3 weeks later...

This is so unbelievable how all our children have gone through this exact same behavior. We have just come out of one for the past hour. I am so completely exhausted from dealing with this and fighting with doctors. WHY WHY WHY is it so impossible for these doctors to understand this and except this?

 

Linda

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