Re: reply to

[Guest guest]

Jeanie, that is interesting that you mentioned they mentioned an unknown bug!! Those was my thoughts excactly when my older son got the rash and then my younger did later!! I just didnt feel it was the pox(no pus/scabs). I can tell you there are more than one strain of the pox though, so some that have had the pox can still get later another strain. Most think you can only get once. But this odd rash(no pus/scabs) didnt seem like the pox. Others have gotten in our town and are being told it could be the pox(I doubt this). Another thought some was thinking was the incurable(sometimes) form of staphylococcus/mersa(MRSA) a super bug(OLE can kill this one from what I understand)!! It has made it our region of the states! Just what did you hear about this bug?? I am curious to learn about it!! Jennie wrote: let us know if it was chicken pox, my dd had a rash very similiar, this last summer and the health professionals swore it was pox, but she already had it, then that big thing came out about that weird itchy bug and they never really did know exactly what it was. How do they know if it is chicken pox? They tried to say my dd's was, which means they are mearly guessing by what the rash looks like...........does your child sleep in flame retardant jammie's? Thanks for sharing about the oregano, does it take the itching away as well as the rash?Happel's <ctajcharter (DOT) net> wrote: Okay, I know we're about children and the adverse effects of Miralax, but this is on my mind (since 11:30 last night!) and I HAVE to ask... Last evening, around 7:30 my son came to me and showed me a weird rash on his arm, up near his "elbow pit." It was a cluster of small blisters that itched terribly. I shrugged it off, saying it must be a reaction to something. I threw some oil of oregano on it and off we went. About 11:30 last night, he came to me again. This time, the rash was EVERYWHERE - his stomach, arms, back, tops of his legs...new blisters were forming as I stood there amazed - up his neck, on his face and on the backs of his legs. However, the original blisters on his arm were gone! He was itching like mad, crying and giving himself welts from scratching so hard (you know how kids with sensory issues are!!). I looked up "chicken pox" on google

images and found exactly what he had going on. Since the oregano worked earlier to stop the itching, I threw a ton of it on him...it was like he was bathed in it. We joked that the dog might mistake him for pizza and eat him... Anyway, I planned to stay home from work today to deal with a kid with sensory issues with chicken pox (what a fun day, hey?!). When I checked on him this morning (I got up for work just in case...), he was totally fine!!!! What in the world!? Has anyone ever heard of this - do you know if oregano is some secret "cure" for chicken pox??? Oh, another reason I think it is/was chicken pox is 3 days ago (24-72 hours), he came home from school with a tummy ache, fever and very lethargic. "They" say thats a symptom. Any ideas???? Thanks, ladies! Tracie

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[Guest guest]

I guess I'll never know if it really was chicken pox...it's totally

gone this morning!! If my daughter breaks out, then I will assume.

But no point in going to the doctor (I really wouldn't go anyway)

with only scratch welts left. It might get ME in trouble -

" Hmmm...you used oregano on your kid with chicken pox and he all he

has left are scratch welts? Yeah, right. Hello, social services?? "

He sleeps in his shorts and a t-shirt so I doubt it's flame retardent

jammies. He's slept in clothes his whole life (again, sensory

issues). Why do you ask?

Okay, I know we're about

children and the adverse effects of Miralax, but this is on my mind

(since 11:30 last night!) and I HAVE to ask...

>

> Last evening, around 7:30 my son came to me and showed me a weird

rash on his arm, up near his " elbow pit. " It was a cluster of small

blisters that itched terribly. I shrugged it off, saying it must be a

reaction to something. I threw some oil of oregano on it and off we

went.

>

> About 11:30 last night, he came to me again. This time, the rash

was EVERYWHERE - his stomach, arms, back, tops of his legs...new

blisters were forming as I stood there amazed - up his neck, on his

face and on the backs of his legs. However, the original blisters on

his arm were gone! He was itching like mad, crying and giving himself

welts from scratching so hard (you know how kids with sensory issues

are!!). I looked up " chicken pox " on google images and found exactly

what he had going on. Since the oregano worked earlier to stop the

itching, I threw a ton of it on him...it was like he was bathed in

it. We joked that the dog might mistake him for pizza and eat him...

>

> Anyway, I planned to stay home from work today to deal with a kid

with sensory issues with chicken pox (what a fun day, hey?!). When I

checked on him this morning (I got up for work just in case...), he

was totally fine!!!! What in the world!?

>

> Has anyone ever heard of this - do you know if oregano is some

secret " cure " for chicken pox???

>

> Oh, another reason I think it is/was chicken pox is 3 days ago

(24-72 hours), he came home from school with a tummy ache, fever and

very lethargic. " They " say thats a symptom.

>

> Any ideas???? Thanks, ladies!

> Tracie

>

[Guest guest]

you know I completely forgot that my second one got it a couple days later, not as bad, theirs did have pus at the tips, she was outside just after it got dark and came running in that she was itching so bad but it was only under her clothes so we originally thought it was from where her swim suit was touching her thinking it was like hot tub rash, the doctor didn't know, and it lasted a week or so, that week there were people on the news with this unknown itchy rash they said was from an unseen, unknown mite from the locust's...........I guess we'll never know if was chicken pox, cause they never tested for it, nor do I know if they can or if it matters but it would be nice to know if my kids had pox twice or if it was the mite that came with the locust? Jennie wrote: Jeanie, that is interesting that you mentioned they mentioned an unknown bug!! Those was my thoughts excactly when my older son got the rash and then my younger did later!! I just didnt feel it was the pox(no pus/scabs). I can tell you there are more than one strain of the pox though, so some that have had the pox can still get later another strain. Most think you can only get once. But this odd rash(no pus/scabs) didnt seem like the pox. Others have gotten in our town and are being told it could be the pox(I doubt this). Another thought some was thinking was the incurable(sometimes) form of staphylococcus/mersa(MRSA) a super bug(OLE can kill this one from what

I understand)!! It has made it our region of the states! Just what did you hear about this bug?? I am curious to learn about it!! Jennie<><Jeanie Ward <dreamjeaniesbcglobal (DOT) net> wrote: let us know if it was chicken pox, my dd had a rash very similiar, this last summer and the health professionals swore it was pox, but she already had it, then that big thing came out about that weird itchy bug and they never really did know exactly what it was. How do they know if it is chicken pox? They tried to say my dd's was, which means they are mearly guessing by what the rash looks like...........does your child sleep in flame retardant jammie's? Thanks for sharing about the oregano, does it take the itching away as well as the rash?Happel's <ctajcharter (DOT) net> wrote: Okay, I know we're about children and the adverse effects of Miralax, but this is on my mind (since 11:30 last night!) and I HAVE to ask... Last evening, around 7:30 my son came to me and showed me a weird rash on his arm, up near his "elbow pit." It was a cluster of small blisters that itched terribly. I shrugged it off, saying it must be a reaction to something. I threw some oil of oregano on it and off we went. About 11:30 last night, he came to me again. This time, the rash was EVERYWHERE - his stomach, arms, back, tops of his legs...new blisters were forming as I stood there amazed - up his neck, on his face and on the backs of his legs. However, the original blisters on his arm were gone! He was itching like mad, crying and giving himself welts from scratching so hard (you know how kids with sensory issues are!!). I

looked up "chicken pox" on google images and found exactly what he had going on. Since the oregano worked earlier to stop the itching, I threw a ton of it on him...it was like he was bathed in it. We joked that the dog might mistake him for pizza and eat him... Anyway, I planned to stay home from work today to deal with a kid with sensory issues with chicken pox (what a fun day, hey?!). When I checked on him this morning (I got up for work just in case...), he was totally fine!!!! What in the world!? Has anyone ever heard of this - do you know if oregano is some secret "cure" for chicken pox??? Oh, another reason I think it is/was chicken pox is 3 days ago (24-72 hours), he came home from school with a tummy ache, fever and very lethargic. "They" say thats a symptom. Any ideas???? Thanks, ladies! Tracie Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

,

I'm sorry, you have a lot on your plate, the symptoms I've seen people report are mostly things like hand wiggleing, shoulder shrugging, eye brows going up and down, seizures, manic and aggressive behavior, tremors, urinary stinging burning, redness irritated bottoms, sensitivity to sound, smells, and chemicals. But if you look at the adverse reaction sheets from the FDA posted in the archeives, you'll find many more, renal failure, feeling hot, feeling cold, abnormal behavior etc. So these kinds of behaviors you're talking about have always happened?

HTH

-------------- Original message -------------- From: ChrisN1220@...

In a message dated 2/14/2008 8:02:16 AM Eastern Standard Time, dreamjeaniecomcast (DOT) net writes:

What kind of behavior issues are you experiencing?

Probably NOT the kind that you guys are familiar with. (I hope!) But, here goes.

Becky has trouble staying in reality and staying in the here and now. Some people would call her a "liar", but I know different. She tends to fabricate these tall tales, but they are all things that she either fears, or things she wishes would happen. Remember, this girl has Syndrome, and is NOT typically developing. These behaviors are not necessarily typical of WS kids. Also, Becky tends to think that others know what she is thinking. For example: We were walking down the Mall, and she saw a really FAT lady go by. She turned to me and said "Mommy, I'm sorry, it wasn't nice of me to call that lady FATSO". I assure her that she didn't, but she can't understand.

She'll keep it up ALL day long. "I'm such a bad girl, I called the lady FATSO".

Becky can't distinguish the difference between thought and reality.

Sometimes she'll see a group of teenage boys, and say "how did they know my name?" When I tell her that they don't, she'll say "why did they say hi to me"??????????

This behavior makes for a very long day..........lol

Please tell me that THIS is NOT the type of behaviors that Miralax causes.

Psychiatrists call this "hallucination" or "psychotic" episodes. I don't know.

All I know is that I want her vomiting to stop.

It's been a year and a half. If this surgery doesn't stop it, I think I'll finally have that nervous breakdown. LOL

~

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

So these kinds of behaviors you're talking about have always happened?

When she was younger, we didn't notice that much b/c little kids tend to fabricate. Now that she is 17, it's getting old if ya know what I mean. Thanks for listing those behaviors.

Sometimes when she is peeing, she says OUCH!

She does have the manic/aggressive mood swings as well. What do you guys think about a product called "lactulose" for constipation?

Thanks again.

~Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

Ouch while peeing = oxalates. I encourage you to visit the vitaminK

group for the fat soluble vitamin protocol. It has really helped my

son.

>

>

> In a message dated 2/17/2008 9:44:20 PM Eastern Standard Time,

> dreamjeanie@... writes:

>

> So these kinds of behaviors you're talking about have always

happened?

>

>

> When she was younger, we didn't notice that much b/c little kids

tend to

> fabricate. Now that she is 17, it's getting old if ya know what

I mean.

> Thanks for listing those behaviors.

> Sometimes when she is peeing, she says OUCH!

> She does have the manic/aggressive mood swings as well. What do

you guys

> think about a product called " lactulose " for constipation?

> Thanks again.

> ~

>

>

>

> **************Ideas to please picky eaters. Watch video on AOL

Living.

> (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-

campos-duffy/

> 2050827?NCID=aolcmp00300000002598)

>

[Guest guest]

It's a product made from real milk sugar, most people including myself haven't had much luck with it and it supposively ferments in the stomach because of the sugar but I would definetely use it over miralax. Anything that's not made from a derivitive of antifreeze is good in my book. I guess it does work but not as quick as you need it to, it's comparable to cayro syrup. It seems magnesuim is the thing that get's things going, although there are many forms. oxide, citrate, etc. Kirkman Labs sounds like it's right up your alley, they make wafers and any form for people who have physical difficulties for taking anything. Natural Calm sounds good but it's out of the question if it's a liquid. See 's post just before this one pertaining to the B6/magnesium wafers, they will send you a sample of 15 for $3.25

As far as the urinating issue, it seems as though more girls than boys, but, there seems to be a trend of the burning and stinging when urinating while on and after, seems to subside when taken off.

-------------- Original message -------------- From: ChrisN1220@...

In a message dated 2/17/2008 9:44:20 PM Eastern Standard Time, dreamjeaniecomcast (DOT) net writes:

So these kinds of behaviors you're talking about have always happened?

When she was younger, we didn't notice that much b/c little kids tend to fabricate. Now that she is 17, it's getting old if ya know what I mean. Thanks for listing those behaviors.

Sometimes when she is peeing, she says OUCH!

She does have the manic/aggressive mood swings as well. What do you guys think about a product called "lactulose" for constipation?

Thanks again.

~

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

,

I wanted to mention that vomiting is one of the signs of ethylene

glycol toxicity. EG is metabolized into oxalic acid (and a few other

products) in the body - so if she's already having painful urination

(like LeeAnn said, painful urination often = oxalate issues), then she

may be vomiting due to overload of oxalates also. Just a speculation

based on the symptoms of EG toxicity.

If the vomiting coincided with (or increased) with the introduction of

Miralax, it could be that it is being broken down to EG and converted

to oxalates and adding to and/or causing some of these problems.

Remember, this is still a hypothesis about the MIralax being broken

down - we need some kids tested for EG toxicity while on Miralax to

have evidence. If your daughter is still on Miralax, it could be

informative if you can ask them to check her serum/blood for ethylene

glycol.

Even if the vomiting cannot be correlated to Miralax, it could

possibly be an indication of too much oxalic acid, regardless if the

source was breakdown of Miralax to EG to Oxalates, it could be dietary

and/or that her body just manufactures too much.

HTH.

best,

p.s. - I second LeeAnn's recommendation to check out the vitamin K

protocol - it seems to really be addressing several of the

'underlying' issues (e.g., subclinical hypothyroidism, imbalanced

calcium due to bone remodeling issues, tooth issues (enamel,

growth...), fat soluble vitamin deficiencies which subtly alter these

processes).I'm still 'digesting' all the info related to the vitamin K

protocol, but my impression thus far is that I believe, over time

these " little things " that no one is particularly paying attention to

are causing cumulative effects may manifest as issues that seem

unrelated. I haven't yet seen so many things put together and

addressed anywhere else. I think many of the parents at this group

could benefit from the knowledge shared at that group.

As a lot of these things (hypothyroid, dental enamel issues, etc.) can

occur in celiacs/gluten intolerant persons, I think anyone who has

been diagnosed as celiac or gluten intolerant (or even finds

themselves responding to GF (and probably CF) diet should educate

themselves on this protocol.

Thanks, LeeAnn, for bringing it up at this list - I would've never

known about it otherwise.

> >

> >

> > In a message dated 2/17/2008 9:44:20 PM Eastern Standard Time,

> > dreamjeanie@ writes:

> >

> > So these kinds of behaviors you're talking about have always

> happened?

> >

> >

> > When she was younger, we didn't notice that much b/c little kids

> tend to

> > fabricate. Now that she is 17, it's getting old if ya know what

> I mean.

> > Thanks for listing those behaviors.

> > Sometimes when she is peeing, she says OUCH!

> > She does have the manic/aggressive mood swings as well. What do

> you guys

> > think about a product called " lactulose " for constipation?

> > Thanks again.

> > ~

> >

> >

> >

> > **************Ideas to please picky eaters. Watch video on AOL

> Living.

> > (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-

> campos-duffy/

> > 2050827?NCID=aolcmp00300000002598)

> >

>

[Guest guest]

Hi ,

Well, the test may not be readily available to this particular doctor

but it DOES exist. See the documents in the " Ethylene Glycol

Toxicity " folder I just created (in the Files section of this group).

There are 4 articles which specifically mention testing blood/serum

ethylene glycol levels (and these are just the first 4 I had easy

access to - I am sure there are many more). Only one article (AAFP

article from I think 2005) mentions that the test may not be readily

available, but one article was published over 10 years ago & mentions

testing serum EG.

It *is* possible.

I used the " highligher " feature to highlight the relevant parts of the

articles.

If the doctor was implying the test does NOT exist at all, you could

show him/her these papers. If the doctor was implying that it just

wasn't available to him/her then if you are truly interested in

getting her tested, you could show him/her these articles and press

him/her for an answer as to where you could get the test done.

Also see: http://www.nlm.nih.gov/medlineplus/ency/article/003564.htm

And here's a lab that offers the test (I assume via doctor's order)

http://www.aruplab.com/guides/ug/tests/0090110.jsp

Another test

http://www.kaceyinc.org/kacey-inc/files/FINAL-SEP-06%20%208%20MINUTE_INSERT%20AN\

TI_FREEZE_SHEET%20%20080806%20(4).pdf

At the very least, it seems reasonable to get the doctor to test her

urine for oxalic acid crystals (again, this cannot be used to " prove "

it came from PEG degradation, but will give YOU and her info on how

she might be feeling and what you might be able to do to help her feel

more comfortable.)....

hth,

>

>

> In a message dated 2/18/2008 1:48:12 PM Eastern Standard Time,

> littlelief@... writes:

>

> If your daughter is still on Miralax, it could be

> informative if you can ask them to check her serum/blood for ethylene

> glycol.

>

>

>

> Dr. is claiming that is NO such test available.

> Now what?

> ~christine

>

>

>

> **************Ideas to please picky eaters. Watch video on AOL

Living.

>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

> 2050827?NCID=aolcmp00300000002598)

>