Re: PANDAS and autism

[Guest guest]

>>the stimming is getting worse and the tantrums are back. He continues to

progress in handwriting and speech, but the behaviors and stimming are getting

really bad. On top of that, he is now acting sick, like a bad cold. He is

cranky, stuffy, and whiney.

I eliminated strep at my house with OLE.

What are the stims and behaviors?

Dana

[Guest guest]

The stims a behaviors sound like yeast overgrowth ... probably from the

antibiotics. My PANDAS munchkin always has to take an anti fungal when she's on

an antibiotic. I don't think it's a pipe dream at all. My two oldest are

autistic, and my youngest is NT. We found out this year that my youngest has

PANDAS and major yeast problems. Actually right now her yeast is way up and

she's a whole other kid. She's usually extremely nice, not a mean bone in her

body(I'm not just saying that either). She's in gifted classes, and she almost

never misbehaves. I'm not exaggerating I swear... I think God knew I'd need an

easy child Anyways when her yeast is up she's mean as a snake , she can't pay

attention to save her life...I literally have to go up and put her face in my

hands to get her attention. She's extremely hyper,loud, and very easy to cry

(another thing way out of character for her). I was really afraid that she was

starting to become Bipolar, or ADHD . Then we had her tested for food

sensitivities and yeast overgrowth and strep titers etc...we did it when we did

the older kids just to see what would come up. Thank God we did that! She has

just as many issues as the older two. So, no I don't think it's a pipe dream at

all

[Guest guest]

Sorry, no experience with Strep(touchwood), but what's Phosphaline?

Would you mind posting the brand?

Sasmita

>

> I have looked through the archives for this group and at Danas view. I think

it's worth testing my son for PANDAS, but wanted to get some input here:

>

> In a nutshell, my 5 year old is responding, though slowly, to yeast control

and supplements like phosphaline, fish oil, vitamins, enzymes, and GF/CF. Things

were going very well until 2 things happened. First, he had a bad reaction to a

yeast killer and then refused to take anything for 2 weeks. We still can't get

the phosphaline in him, and that is concerning because it was so helpful with

behavior and speech. Second, strep. I was sick and tested positive for strep, so

I had my children tested, and my son was positive. No symptoms btw. He was

treated with augmentum, which we had to stop after 7 days due to gut issues and

he got a shot of pennicillin. That went fine, but two weeks later the stimming

came back. That was about 6 weeks ago, and the stimming is getting worse and the

tantrums are back. He continues to progress in handwriting and speech, but the

behaviors and stimming are getting really bad. On top of that, he is now acting

sick, like a bad cold. He is cranky, stuffy, and whiney.

>

> We plan to get a throat swab today. Should I go ahead and get blood work done

now for strep antibody titers?

>

> And the most important questions...can PANDAS be the cause of the original

symptoms that started at 18 months? Could this be the whole deal? Just pipe

dreaming here...

>

> Thanks in advance!!

>

>

>

[Guest guest]

So, what is the difference between having strep issues and PANDAS? What tests

would I need for each of those?

My DS's stims are currently: eye trailing (looking down a line while running,

out of the corner of his eyes), hitting his forehead with his fists really hard,

groin touching/pressing, chin pressing, and lots of noises and sounds. He's also

in la la land, inattentive, has bad tantrums over nothing, and some OCD

behaviors. For instance, he fell apart because I was loading the dishwasher, not

unloading it, and he wanted to put the cups away himself. He's been tearful,

clingy, and sad. When at this best, none of these behaviors is present. In fact,

the forehead hitting is brand new and it's disturbing.

I really didn't think it was yeast because his stools are fine and he is

sleeping, which are his usual clues to yeast. Looking back over my journal, he

has been nearly stim free since February, and this started gradually in

mid-April and is getting worse and worse. Usually a bad phase lasts 2 weeks max.

We are already on a pretty heavy yeast protocol...two probiotics and a yeast

killer daily. What suggestions does anyone have?

> >>the stimming is getting worse and the tantrums are back. He continues to

progress in handwriting and speech, but the behaviors and stimming are getting

really bad. On top of that, he is now acting sick, like a bad cold. He is

cranky, stuffy, and whiney.

>

>

> I eliminated strep at my house with OLE.

>

> What are the stims and behaviors?

>

> Dana

>

[Guest guest]

so glad you found out about your youngest in time! Those are great tips, thank

you.

I didn't think this was yeast because we are using so many yeast treatements

already. I supposed it could be, and we already stepped up our Threelac and

increased the GSE, so we'll see what happens.

What tests are for strep titers? Is that blood or stool?

>

> The stims a behaviors sound like yeast overgrowth ... probably from the

antibiotics. My PANDAS munchkin always has to take an anti fungal when she's on

an antibiotic. I don't think it's a pipe dream at all. My two oldest are

autistic, and my youngest is NT. We found out this year that my youngest has

PANDAS and major yeast problems. Actually right now her yeast is way up and

she's a whole other kid. She's usually extremely nice, not a mean bone in her

body(I'm not just saying that either). She's in gifted classes, and she almost

never misbehaves. I'm not exaggerating I swear... I think God knew I'd need an

easy child Anyways when her yeast is up she's mean as a snake , she can't pay

attention to save her life...I literally have to go up and put her face in my

hands to get her attention. She's extremely hyper,loud, and very easy to cry

(another thing way out of character for her). I was really afraid that she was

starting to become Bipolar, or ADHD . Then we had her tested for food

sensitivities and yeast overgrowth and strep titers etc...we did it when we did

the older kids just to see what would come up. Thank God we did that! She has

just as many issues as the older two. So, no I don't think it's a pipe dream at

all

>

[Guest guest]

Phosphaline is made by Xymogen. It comes in large capsules or a liquid that is

very, very (did I say VERY) gross smelling and tasting. It is a phospholipid and

choline supplement and was highly recommended by our nutritionist. We saw great

improvement in a week or two in speech, mood, behavior. It's hard to find, so I

became a distributor for Xymogen so I could get it easily.

We have had trouble mixing it to hide the taste, but it was worth it. I'm trying

to find the article by our nutritionist to post here...

http://kellydorfman.com/images/The_Best_Dyspraxia_Program_Ever_website.pdf

If that link doesn't work, go to Dorfman.com and look under " articles for

children " for the one about dypraxia.

HTH,

> >

> > I have looked through the archives for this group and at Danas view. I think

it's worth testing my son for PANDAS, but wanted to get some input here:

> >

> > In a nutshell, my 5 year old is responding, though slowly, to yeast control

and supplements like phosphaline, fish oil, vitamins, enzymes, and GF/CF. Things

were going very well until 2 things happened. First, he had a bad reaction to a

yeast killer and then refused to take anything for 2 weeks. We still can't get

the phosphaline in him, and that is concerning because it was so helpful with

behavior and speech. Second, strep. I was sick and tested positive for strep, so

I had my children tested, and my son was positive. No symptoms btw. He was

treated with augmentum, which we had to stop after 7 days due to gut issues and

he got a shot of pennicillin. That went fine, but two weeks later the stimming

came back. That was about 6 weeks ago, and the stimming is getting worse and the

tantrums are back. He continues to progress in handwriting and speech, but the

behaviors and stimming are getting really bad. On top of that, he is now acting

sick, like a bad cold. He is cranky, stuffy, and whiney.

> >

> > We plan to get a throat swab today. Should I go ahead and get blood work

done now for strep antibody titers?

> >

> > And the most important questions...can PANDAS be the cause of the original

symptoms that started at 18 months? Could this be the whole deal? Just pipe

dreaming here...

> >

> > Thanks in advance!!

> >

> >

> >

>

[Guest guest]

We found the strep from their stool studies...I think we did one for blood too.

I'll have to check and get back to you. I know for sure it was in the stool

though...I was going over those lab results this week. If you don't think it's

yeast you could be right. A lot of the behaviors and symptoms from different

issues can be the same. I've heard people talking about similar behaviors from

bacterial issues. Good luck finding it out...it's darn tricky

[Guest guest]

Thanks for the article! That had lots of great info. I just bought some

Phosphatdylcholine(sp) thinking of trying it b/c one of the things I was reading

was saying how it can help clear up foggy thought process. I was actually going

to reread that article and see why I thought it was such a good idea for my

kids. With all the stuff I read I can't keep track of it all in my head

[Guest guest]

Here is my absolute favorite site on PANDAS: http://e-pandas.com/ It explans it

really well.

As someone else mentioned, it is sometimes hard to distinguish between yeast,

bacteria, and PANDAS. Anyway, I have found it to be the case, because my son's

symptoms don't always follow the norm.

It seems as though your son might possibly be experiencing some pain, so he's

trying to press or bang it away. I wouldn't relate the pain to PANDAS though.

And generally, handwriting significantly declines with a PANDAS flare-up. It

might be worth it to do some more investigating re: clostridia. Sometimes, when

we fight yeast, we end up creating bacteria/clostridia problems in my son.

If you want to test for PANDAS, ask your doc for bloodwork to check ASO and

DNASE levels. Good luck!

Sara

> > >>the stimming is getting worse and the tantrums are back. He continues to

progress in handwriting and speech, but the behaviors and stimming are getting

really bad. On top of that, he is now acting sick, like a bad cold. He is

cranky, stuffy, and whiney.

> >

> >

> > I eliminated strep at my house with OLE.

> >

> > What are the stims and behaviors?

> >

> > Dana

> >

>

[Guest guest]

> My DS's stims are currently: eye trailing (looking down a line while running,

out of the corner of his eyes), hitting his forehead with his fists really hard,

groin touching/pressing, chin pressing, and lots of noises and sounds. He's also

in la la land, inattentive, has bad tantrums over nothing, and some OCD

behaviors.

Most of the time, these meant yeast overgrowth here.

> I really didn't think it was yeast because his stools are fine and he is

sleeping, which are his usual clues to yeast.

When my son had yeast in his brain, he had no physical/GI symptoms, and no sleep

issues, but he had all of the behaviors you wrote above.

>>We are already on a pretty heavy yeast protocol...two probiotics and a yeast

killer daily. What suggestions does anyone have?

At the height of certain protocols, I had to give my son 20mg biotin and 4

tablets GSE 3x per day. So two probiotics and a yeast killer daily doesn't

really sound like much.

Conversely, the yeast might be gone and those symptoms might be bad bacteria

symptoms. Sometimes my son's bad bacteria symptoms were the same as his yeast

symptoms. However, what you wrote above was almost always yeast here.

Good luck.

Dana