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dasu

Hyperactivity and uncontrolled behavior

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My son and daughter ages 6 and 5 both have PANDAS. One of the issues we observed long before a PANDAS diagnosis or more evident symptoms was extreme hyperactivity and uncontrollable silliness, odd body motions, potty talk, and even morbid talk. This gets bounced around back and forth between the two making it even worse (isn't that a tic?). Car trips can be unbearable, I thougt I was going to lose my mind on the last trip to Dr L, a whopping 100 minute trip. They cannot be out in public either. Once they got to throwing around food at the grocery store. We used to try discipline but they are simply not able to control themselves.

 

Anyways both are in the middle of a bad flare and I am at my wits end. Is there anything we can give them to calm them? Would food allergies or maybe a drop or rise in blood sugar be exacerbating this issue? It seems to come in flares and suddenly.

Edited by dasu

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I have nothing to offer in the way of help here, but hope that others will because I am dealing with the same issue with my 10 year old. I really thought things were getting better since starting antibiotics last month, but in the past week he has been out of control hyper and I have no idea how to handle it! His tics have intensified also. Is this a sign that the antibiotic is no longer working???

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Might be yeast...

 

I could relate to your post.

 

Gluten free, dairy free, low sugar/ carbs, no food dyes, no high fructose corn syrup,

100% diet

really does calm my dd down.

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This may be a herx response, a buildup of the original toxins (produced by die-off caused by the immune system) and thus the original symptoms, caused by an inability to detox from abx produced die-off.

 

For us both silliness and increased ticcing was an indication of toxin buildup, either from yeast or bacterial die-off.

 

This would occur during tindamax pulses, and was in fact unresolvable during continuous tindamax - it just kept escalating, which was horrible. For this reason we switched to pulsing.

 

With pulsing I would see these behaviours increase at the beginning of the pulse (3 days), which would start resolving on the third day and then through the "off" period. For DD, each herx response produced by consecutive pulses would lessen, until after 6 months she was no longer herxing.

 

For us, anti-inflammatories (japanese knotweed) and in increase in our detox protocols speeded up recovery.

Edited by rowingmom

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for us such silliness was a part of a cycle. it would last a few days then go away to reaper a week or two later. the same situation with two kids going back and forth and making it worse.

now, do I have a suggestion? overtime, we saw lessening of the symptoms.

for us, discipline did help but only somewhat. separating them, each in their room. taking long time outs -- time to calm down, we call it - also helped.

you got some great suggestions above, if you post what your kids are taking now, we might notice something that is missing. are they on fish oil for instance? did you try ibuprofen? how about a diet? cq-10? olive leaf? any other anti-inflammatory?

for car trips, did you try books on tape? because they are so obsessive, our kids get so focused on them that 100 minute trips are no longer a problem.

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they had a flare starting in december, and got sick a couple times over the winter. our primary care refused antibiotics until finally about a month ago we went to another place which prescribed an antibiotic.

 

went to Dr L and now they are both on prophylactic penicillin. as far as diet they are on gluten free - my daughter was allergic to wheat but appears to be over that, although the whole family has kept at the gluten free diet. we tried ibuprofen for a week which helped but we dont want to damage their bodies with continued use. they take curcumin, quercetin, cod liver oil and as of three days ago, a probiotic (with strep therm, which i have heard is bad but it appears they are getting better) they took some OLE back when they were sick which helped, but we stopped.

 

i just placed an order for reishi mushroom powder, biacilin, passion flower, and astagalus. i dont have much knowledge on what to look for and application. if we start them altogether im not sure what causes what. questions questions....

 

good suggestion regarding books on tape. thanks.

 

EDIT: i just had the thought that by writing about their symptoms i am making my kids sound bad. i dont think that at all. in fact they can be so kind and thoughtful at times, even in a flare. our neighbor just gave birth to a baby girl and they wrote up cards and picked flowers from the yard ti give to her, all unprompted by parents. they give me multiple cards a day, with drawings and "i love you" written all over. they love to hug and kiss.

Edited by dasu

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As someone mentioned keeping them busy is critical. There are moments where they can have free play but the trick is sensing when free play is degrading into craziness early enough to get them redirected into some task/job/more engaging activity.

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I remembered another think, methylcobaliamin b12, when we first used it, stopped our kids in their tracks. we did 1000mcg sublingualy. the effect did not last.

so you are not dairy-free. you may want to try it.

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interesting. ill add that to the order list. how long was the "effect did not last"?

 

going dairy free is going to take some prep. yogert, kefir, cheese and milk are hot items in this household.

Edited by dasu

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My son has been experiencing the same thing nearly 6 days know, I finally remembered what helped in the past was activated charcoal (had already tried taurine, probiotics, advil, magnesium) I pulled it out and gave him two capsules about 20 minutes later =calm. Took him off the edge. but had to wait two hours before you can give anything else.

 

Activated charcoal and oldie but a goodie.

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dasu says, "interesting. ill add that to the order list. how long was the "effect did not last"?"

 

well, we liked the effect so we started giving 1000mcg every day. had a great week. then, they got extremely hyper. we started giving mb12 once a week after that which had some positive effect. then, i discovered that they have very complicated genetic mutations that makes them not process well mb12. so, now we are dealing with methylation in a roundabout way.

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I feel like I'm a broken record on this but Vayarin helped tremendously with my child's behavior/focus.

Well, I spent yesterday jumping through hoops to try this from my regular Ped. only to find out my pharmacy said:

No longer available from the manufacture.

My insurance wasn't going to cover it anyway,

so I ordered some phosphatidylserine (PS100)

and have restarted high EPA fish oil.

Hopefully I can create some magic, needing some better focus over here.

We did use PS100 a few years back,

and it was one of our few real 'wows'

Thanks for reminder.

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One of the things that helped behavior (rages, anger etc..) was lithium orotate. It's a low dose supplement not the same as lithium prescription for bipolar. But it really helped my daughter. Start off with about half a capsule then work up to full capsule. My dd now takes it twice a day.

 

Dedee

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