Re: outbursts for unknown reasons

[Guest guest]

Ronda

We also have had to deal with un-explainable outbrusts over several years. For

us it was foods. We are on the diet but various caregivers and teachers aids

have over he years slipped him Red candies, snachs containing cheese or some

other allergin. Summers have been the best for us because we have much more

control but it still happens.

Yesterday Connor found a choolate bar (Dark Chocolate non dairy) about ten in

the morning. I realized and took it from him after just a small amount. At three

he shot off like a rocket, aggressive, yelling the whole nine yards. The does

not take much of a food he has issues with. Log your food intake every day and

I would bet DR G willl ID the problem.

The more acurate the diet the less often you have problems and the easier it is

to find the diet stuff that should have been on the list. All these kids are

different and react differently to different foods.

Also do not ignore enviromental alergies.

> From: Vicki Eisen <vickieisen@...>

> Subject: outbursts for unknown reasons

> nids

> Date: Monday, July 7, 2008, 12:04 AM

> How do you figure out what is causing outursts? My son is

> very inconsistent and it has always been a problem. He has

> PANDAS and is finally i believe getting the right treatment

> plan by being on the protocol.

> He started on valtrex and for a week he was amazing. Then

> he kind of plateaued. He started diflucan and he was even

> more amazing. After 2 weeks he starts with the outbursts

> and turns out he has a double ear infection. He starts

> antibiotics, he's better, then he's freaking out

> with the outbursts again. All along he still has high ASO

> strep titers.

> How do you figure out the cause. Is the diflucan causing a

> die off and the antibiotic is making it worse? Or is the

> PANDAS set off because of the ear infection.

> The outbursts are like major temper tantrums, they do look

> anxiety and internally related initially then he lashes out

> and gets worked up and even aggressive. They stop in about

> 10-15 minutes and he acts totally fine like it never

> happened. Those 15 minutes are very very upsetting!!!

>

> Any parents want to give me some insight or thoughts

> about what might be going on. Through it all he has made

> more noticeable progress in the past 3 months on then

> any other time. I just wish I understood what is driving

> the outbursts.

> Vicki

[Guest guest]

My son had complex partial seizures that displayed in outbursts like you

describe. He would be a bit woozy after them sometimes. When his HHV6 titer

came down, they stopped. It is horrible to live through and makes you neurotic

worrying about when the next one will happen. I don't know if this is at all

what is going on with your son, but a possibility. Hang in there, the meds will

help. It takes time, though.

Ellie

outbursts for unknown reasons

How do you figure out what is causing outursts? My son is very inconsistent

and it has always been a problem. He has PANDAS and is finally i believe getting

the right treatment plan by being on the protocol.

He started on valtrex and for a week he was amazing. Then he kind of

plateaued. He started diflucan and he was even more amazing. After 2 weeks he

starts with the outbursts and turns out he has a double ear infection. He starts

antibiotics, he's better, then he's freaking out with the outbursts again. All

along he still has high ASO strep titers.

How do you figure out the cause. Is the diflucan causing a die off and the

antibiotic is making it worse? Or is the PANDAS set off because of the ear

infection.

The outbursts are like major temper tantrums, they do look anxiety and

internally related initially then he lashes out and gets worked up and even

aggressive. They stop in about 10-15 minutes and he acts totally fine like it

never happened. Those 15 minutes are very very upsetting!!!

Any parents want to give me some insight or thoughts about what might be

going on. Through it all he has made more noticeable progress in the past 3

months on then any other time. I just wish I understood what is driving the

outbursts.

Vicki

[Guest guest]

Hey Vicki -

I have PANDAS (I'm about to be 39), and I've been struggling (untreated most of

the time except random antibiotics and some occasional Diflucan) since about

2002 with this last episode (probably my 4th, and they tend to last about 3-5

years untreated for me).  While I don't have tantrums (that'd be a problem for a

grown woman but could be fun I guess!), I can definitely say that ANY bacterial

infection can set it off.  For certain, mycoplasma pneumonia sets it off about

1/2 of the severity of strep.  Also, cerrtain probiotics do - Culturelle,

anything with l.Rhamusus in it.  So do use probiotics, but use only acidophilus,

or best of all (the least likely to trigger mine) is Kyodophilus.  But I do tend

cut back on all probiotics unfortunately when my PANDAS really really peaks ...

but that could just be that I'm suspecting it for no reason - I get paranoid

about all foods when my OCD peaks.  (My ocd manifests in rhuminations, a strong

urge to

gather wood, and food contamination anxiety, intense generalized &

social anxiety, and a complete inability to remember anything or focus on

anything).

Even more than the ear infection, if he took zythromycin (ie Z-pack), that could

really really set it off even more.  While that's a fine antibiotic for tackling

the infection, in my experience it will aggrevate the symptoms for a while -

although it does bring my ASO down which in the big picture isn't all bad.  I

don't know why it aggrevates it, but it does.  I still use it for my boys if

Cefzil isn't doing the job, but it WILL make my oldest quite irritable for a few

days.  I always always wash off the pink dye - it's the med itself.

I would recommend a journal, if only so that you feel you are doing something to

find the triggers.  But honestly, an infection can trigger it and for some time,

there's little you can do about it than avoid known triggers, until the protocol

has time (like... a year) to really cool down the over-reactive immune system. 

My boys would both get OCD 3 days prior to strep when they were little, which

fortunately went away once treated, but as they have gotten older, they react

like normal kids to strep lately.

How long was/is he on antibiotics? Which one?  Did you notice outbursts starting

at 3-5 day mark of the antibiotic?  That is when I feel the peak if it is

setting me off.  (That does not mean I'm going to stop the antibiotic though -

sometimes you just have to ride it out.)  BTW - Diflucan is a miracle for my

PANDAS.  The antibiotics never help as much alone as they do in combo

w/Diflucan.  I would not really worry about that one, but I would make sure

you're not using the hot-pink one.  Usually the generics are a salmon or light

pink, and they aren't usually as bad.  If Valtrex could trigger it, too bad -

it's too important, but I don't really think it would - as long as you're

washing off the blue dye. 

Just try to make it through these outbursts and stay in touch with the doc. 

Sometimes as you're making strides in one area, you take steps back in other

areas.  I change " One Day at a Time " to " 15 minutes at a time " when I'm going

through periods like that. 

HTH-

outbursts for unknown reasons

How do you figure out what is causing outursts? My son is very inconsistent and

it has always been a problem. He has PANDAS and is finally i believe getting the

right treatment plan by being on the protocol.

He started on valtrex and for a week he was amazing. Then he kind of plateaued.

He started diflucan and he was even more amazing. After 2 weeks he starts with

the outbursts and turns out he has a double ear infection. He starts

antibiotics, he's better, then he's freaking out with the outbursts again. All

along he still has high ASO strep titers.

How do you figure out the cause. Is the diflucan causing a die off and the

antibiotic is making it worse? Or is the PANDAS set off because of the ear

infection.

The outbursts are like major temper tantrums, they do look anxiety and

internally related initially then he lashes out and gets worked up and even

aggressive. They stop in about 10-15 minutes and he acts totally fine like it

never happened. Those 15 minutes are very very upsetting!!!

Any parents want to give me some insight or thoughts about what might be

going on. Through it all he has made more noticeable progress in the past 3

months on then any other time. I just wish I understood what is driving the

outbursts.

Vicki