Re: ethlene-glycol poisioning

[Guest guest]

Re: ethylene glycol and polyethylene glycol

see some previous posts such as these

http://health.groups.yahoo.com/group/miralax/message/5887

http://health.groups.yahoo.com/group/miralax/message/4040

>

> I feel a little dense here, this is a lot to take in. I'm reading the

> FDA stuff. Ethlene-glycol, is that the SAME as polyethlene glycol in

> Miralax. If so it looks like our pediattician should do some testing

> immediatly to see what kind of damage has been done. My son has had

> frequent urination for years (on and off) which I believe is related to

> oxalates in the tissue. That is part of why we went LOD and it was also

> helped by epsom salts baths (which he cannot tolerate now). What has

> gotten bad the past few months is at bedtime he is crying and screaming

> because he has allready emptied his bladder and still feels like he has

> to go. I'm trying not to freak myself out here. Does this sound like

> renal failure????? I feel like an idiot but I need to present this to

> my pediatrician to get the appropriate testing and therapy done to help

> him.

> Thank-you,

> Carole

>

[Guest guest]

My son had several 'bladder infections' that when I go back and look

at the labs -- they probably weren't. He was helped with magnesium

citrate, cod liver oi, VSL#3, vit k, and cranberry juice. The LOD

did not really help - but the Vit K protocol did.

You mentioned that epsom salts no longer work -- they can iritate if

the other stuff (above) are not on board.

HTH

LeeAnn

> > >

> > > I feel a little dense here, this is a lot to take in. I'm

reading the

> > > FDA stuff. Ethlene-glycol, is that the SAME as polyethlene

glycol in

> > > Miralax. If so it looks like our pediattician should do some

testing

> > > immediatly to see what kind of damage has been done. My son has

had

> > > frequent urination for years (on and off) which I believe is

related to

> > > oxalates in the tissue. That is part of why we went LOD and it

was also

> > > helped by epsom salts baths (which he cannot tolerate now).

What has

> > > gotten bad the past few months is at bedtime he is crying and

screaming

> > > because he has allready emptied his bladder and still feels

like he has

> > > to go. I'm trying not to freak myself out here. Does this sound

like

> > > renal failure????? I feel like an idiot but I need to present

this to

> > > my pediatrician to get the appropriate testing and therapy done

to help

> > > him.

> >

> > > Thank-you,

> > > Carole

> > >

> >

> >

> >

>

[Guest guest]

be careful! I'm not a doctor but the same thing happened to us.............what is happening is, the urine is going back up into the bladder, or urether tubes, it's called urinary reflux, there is a test for it, BUT, I asked BEFORE they did the test..........WHAT if she does have this after putting her through dye's and going up there? The simply said they'd give an antibiotic!!!!! The medication itself burns the skin...............I'd push water. Please feel free to confirm but I don't believe in putting them through horrible tests if not need be....................I've seen this over and over on this board for 8 almost 9 years.................also the oxalates themselves are tiny little crystyals that must be very uncomfortable up there.............please have them do a urine sample and I'm sure they are there...........it should show elevated calcium as well because they cling to calcium which pulls it from the body............... Jeanietyes_mom wrote: I feel a little dense here, this is a lot to take in. I'm reading the FDA stuff. Ethlene-glycol, is that the SAME as polyethlene glycol in Miralax. If so it looks like our pediattician should do some testing immediatly to see what kind of damage has been done. My son has had frequent urination for years (on and off) which I believe is related to oxalates in the tissue. That is part of why we went LOD and it was also helped by epsom salts baths

(which he cannot tolerate now). What has gotten bad the past few months is at bedtime he is crying and screaming because he has allready emptied his bladder and still feels like he has to go. I'm trying not to freak myself out here. Does this sound like renal failure????? I feel like an idiot but I need to present this to my pediatrician to get the appropriate testing and therapy done to help him.Thank-you,Carole

[Guest guest]

Jeannie,

I am taking my son in for bloodwork today but was not given a urine specimen cup so that will have to wait until tomorrow. I just want to clarify what you are saying. Are you saying we need to test for urinary reflux and it's a simple urine sample or that there is something more invasive they do. I think calcium oxalate in the tissues is an issue but didn't know if you could find this out with a urine sample.

Thanks,

Carole

-------------- Original message --------------

be careful! I'm not a doctor but the same thing happened to us.............what is happening is, the urine is going back up into the bladder, or urether tubes, it's called urinary reflux, there is a test for it, BUT, I asked BEFORE they did the test..........WHAT if she does have this after putting her through dye's and going up there? The simply said they'd give an antibiotic!!!!! The medication itself burns the skin...............I'd push water. Please feel free to confirm but I don't believe in putting them through horrible tests if not need be....................I've seen this over and over on this board for 8 almost 9 years.................also the oxalates themselves are tiny little crystyals that must be very uncomfortable up there.............please have them do a urine sample and I'm sure they are there...........it should show elevated calcium as well because they cling to calcium which pulls it from the body....

............

Jeanietyes_mom <carolecarlsonalbertsoncomcast (DOT) net> wrote:

I feel a little dense here, this is a lot to take in. I'm reading the FDA stuff. Ethlene-glycol, is that the SAME as polyethlene glycol in Miralax. If so it looks like our pediattician should do some testing immediatly to see what kind of damage has been done. My son has had frequent urination for years (on and off) which I believe is related to oxalates in the tissue. That is part of why we went LOD and it was also helped by epsom salts baths (which he cannot tolerate now). What has gotten bad the past few months is at bedtime he is crying and screaming because he has allready emptied his bladder and still feels like he has to go. I'm trying not to freak myself out here. Does this sound like renal failure????? I feel like an idiot but I need to present this to my pediatrician to get the appropriate testing and therapy done to help him.Thank-you,Carole

[Guest guest]

they do an invaise test for urinary reflux, you can check the urine with a simple urine specimin for oxalate crystals...........I wouldn't test for urinary reflux because they already know if it's happening and they confirm with an invaisive test to find out, then only treat it with antibiotics if it is, so why put the child through the testcarolecarlsonalbertson@... wrote: Jeannie, I am taking my son in for bloodwork today but was not given a urine specimen cup so that will have to wait until tomorrow. I just want to

clarify what you are saying. Are you saying we need to test for urinary reflux and it's a simple urine sample or that there is something more invasive they do. I think calcium oxalate in the tissues is an issue but didn't know if you could find this out with a urine sample. Thanks, Carole -------------- Original message -------------- From: jeanie ward <dreamjeanieatt (DOT) net> be careful! I'm not a doctor but the same thing happened to us.............what is happening is, the urine is going back up into the bladder, or urether tubes, it's called urinary reflux, there is a test for it, BUT, I asked BEFORE they did the test..........WHAT if she does have this after putting her through dye's and going up there? The simply said they'd give an antibiotic!!!!! The medication itself burns the

skin...............I'd push water. Please feel free to confirm but I don't believe in putting them through horrible tests if not need be....................I've seen this over and over on this board for 8 almost 9 years.................also the oxalates themselves are tiny little crystyals that must be very uncomfortable up there.............please have them do a urine sample and I'm sure they are there...........it should show elevated calcium as well because they cling to calcium which pulls it from the body.... ........... Jeanietyes_mom <carolecarlsonalbertsoncomcast (DOT) net> wrote: I feel a little dense here, this is a lot to take in. I'm reading the FDA stuff. Ethlene-glycol, is that the SAME as polyethlene glycol in Miralax. If so it looks like our pediattician should do

some testing immediatly to see what kind of damage has been done. My son has had frequent urination for years (on and off) which I believe is related to oxalates in the tissue. That is part of why we went LOD and it was also helped by epsom salts baths (which he cannot tolerate now). What has gotten bad the past few months is at bedtime he is crying and screaming because he has allready emptied his bladder and still feels like he has to go. I'm trying not to freak myself out here. Does this sound like renal failure????? I feel like an idiot but I need to present this to my pediatrician to get the appropriate testing and therapy done to help him.Thank-you,Carole

[Guest guest]

Same thing with my son, who still ocassionaly has the problem of wetting pants/bed. Check out my earlier posts for a more thorough picture. He'll feel like he's empty, but then all of a sudden feel fullness again. Sometimes he'll feel he doesn't have to go even though he does, and he'll have an accident.

He had the VCUG jeanie refers to and there were no structural abnormalities, even though he had urine retention in the kidneys (Stage 1 Hydronephrosis). His latest ultrasound (roughly 3 yrs after the last) shows no hydronephrosis at present.

The urologist dx'd him with a narrowed/adhesioned urethra (as opposed to the ureters, which travel down from the kidneys to the bladder). This is causing a pressure buildup in the bladder, and also sets the stage for staph infections - my son has had the same symptoms and via urine culture (3-day) has been confirmed with staph in the urine. Urinary staph infections are mostly found in girls, and a boy who presents with one is not that common.

My son is allergic to most antibiotics that are used for urinary infections...we stick with cranberry flushes (and even a bottle of O'Doul's) to flush him out.

If you bump up water, cranberry juice intake and have him void every 1-1/2 to 2 hours, you may find that the condition heals itself (that's how it's been working for us).

However, don't be surprised if you find that he either wets his underwear or his bed. It's not an issue of volume as much as an issue of leakage.

BTW, all of this started AFTER one week on Miralax (which led me to this board).

Hope this helps, and good luck.

I feel a little dense here, this is a lot to take in. I'm reading the FDA stuff. Ethlene-glycol, is that the SAME as polyethlene glycol in Miralax. If so it looks like our pediattician should do some testing immediatly to see what kind of damage has been done. My son has had frequent urination for years (on and off) which I believe is related to oxalates in the tissue. That is part of why we went LOD and it was also helped by epsom salts baths (which he cannot tolerate now). What has gotten bad the past few months is at bedtime he is crying and screaming because he has allready emptied his bladder and still feels like he has to go. I'm trying not to freak myself out here. Does this sound like renal failure????? I feel like an idiot but I need to present this to my pediatrician to get the appropriate testing and therapy done to help

him.Thank-you,Carole

[Guest guest]

Need to add that they way to dx urine retention in the kidneys (non-invasively) is via thermal ultrasound, which shows (in red and in blue) where there is "laying" or "stagnant" urine.

A VCUG is used to confirm that uretal reflux (urine "regurgitating" from the bladder back to the kidney) is the culprit for the urine retention. Uretal reflux is most commonly due to a structural abnormality where the sphincter muscle at the bottom of one or both ureters allows the urine to flow back up to the kidney.

With my son, the first step was the urine culture followed same day with a thermal ultrasound, then a VCUG when the ultrasound showed hydronephrosis.

I feel a little dense here, this is a lot to take in. I'm reading the FDA stuff. Ethlene-glycol, is that the SAME as polyethlene glycol in Miralax. If so it looks like our pediattician should do some testing immediatly to see what kind of damage has been done. My son has had frequent urination for years (on and off) which I believe is related to oxalates in the tissue. That is part of why we went LOD and it was also helped by epsom salts baths (which he cannot tolerate now). What has gotten bad the past few months is at bedtime he is crying and screaming because he has allready emptied his bladder and still feels like he has to go. I'm trying not to freak myself out here. Does this sound like renal failure????? I feel like an idiot but I need to present this to my pediatrician to get the appropriate testing and therapy done to help

him.Thank-you,Carole

[Guest guest]

Yes and I don't necessarily think that all of the miralax is degraded

by the bacteria into ethylene glycol. After all, at our worst point

with my son, he still wasn't near-death or anything. I mean, he had

a lot in him, because we were being told to increase the dose when

his body stopped recognizing the urge to go. At the worst point, my

son's health was being affected. He began to look thin and sickly,

with pale white skin and dark circles under his eyes and his eyes

looked a bit sunken. He was having some trouble with walking. He

could walk but it was clumsy, kind of ataxic like. He had difficulty

with motor planning and coordination. He had tics and facial

grimacing. I mean, it was definitely enough ethylene glycol

producing oxalates in him that it was affecting his health, but it's

not like the entire doses were getting converted, if that makes

sense. I think if every molecule of the PEG were being degraded into

EG, then my son probably would have died. So that's why I say, I do

believe that it is a portion of it, maybe even a small portion of

it... I do think it is possible.

Here is why I think it is oxalates...when my son was on the miralax,

there was a real icky change to his personality and the look in his

eyes. I call it jekyl and hyde look. I had never seen it before

miralax. It was definitely caused by it. Post-miralax, I would see

if maybe a handful of times afterwards, usually in conjunction with a

medicine he was taking or a supplement he was taking.

My daughter has never used miralax, but I have seen the same weird

jekyl/hyde look in her eyes and the same distant behavior, almost

autism-spectrum like. (and I'm not talking about the average kid

having a bad moment in a day. I'm talking about feeling like she is

just in her own world and very distant, for days and weeks). For her,

it was when she was eating high-oxalate-producing foods. So in my

own little laboratory called 'home', I do think that the same

component for both my kids was oxalates. For my son, it was oxalate

overload when portions of the PEG were degraded into ethylene

glycol. For my daughter, it was definitely high oxalate food

related.

As far as detoxing my son, it seemed to be something that took time.

We did do some heavy metal chelation because he had some exposures to

mercury and lead and aluminum, but that's not what everyone should

do. I would say do things like, eat organic foods whenever possible

to reduce the pesticide and chemical exposures, change your household

cleansers to non-toxic natural cleansers, reduce the use of chemicals

in your home, supplement with magnesium or a calcium-magnesium-

vitamin D combination, you can also do Epsom Salt baths which provide

Sulfate to the body which helps with detoxing. And do what you can

to help the body keep stool moving through regularly...use of

probiotics, fiber, other things may help like oxypowder, aloe vera

('s brand tastes like water), Juice with Fibre juice boxes work

well (but they are pricey! mail order only or local pickup only).

>

> My son's pediatrician is not agreeing to do a blood test to check

for Ethylene glycol toxicity. According to him there is no chance Tye

could have that due to miralax. The only way he would have it is if

he drank antifreeze. Obviously I think otherwise and my son seems

very toxic,

> though he has a complex medical profile at this point so sorting

out what is what has been near impossible.

> If we assume he has at least moderate toxicity from miralax can he

be detoxed? What do you use?

> Carole

>

[Guest guest]

if he's so sure - can't he order the test to put your mind at ease

(and prove he's right)? arghhh.......

What about checking oxalates instead - they are produced after EG

toxicity - but also found in foods - so he could at least try to see

if oxalates are part of your son's urinary problems. He could debate

that any elevated oxalates are just from diet, but you could argue

it's possible that some EG was being release from the PEG and thus

resulting in increased oxalates...

sorry to hear - but glad you asked your son's doctor - maybe

eventually one will just test - just once......

Best of luck to you in figuring this all out - hang in there!

> >

> > I feel a little dense here, this is a lot to take in. I'm reading the

> > FDA stuff. Ethlene-glycol, is that the SAME as polyethlene glycol in

> > Miralax. If so it looks like our pediattician should do some testing

> > immediatly to see what kind of damage has been done. My son has had

> > frequent urination for years (on and off) which I believe is

related to

> > oxalates in the tissue. That is part of why we went LOD and it was

also

> > helped by epsom salts baths (which he cannot tolerate now). What has

> > gotten bad the past few months is at bedtime he is crying and

screaming

> > because he has allready emptied his bladder and still feels like

he has

> > to go. I'm trying not to freak myself out here. Does this sound like

> > renal failure????? I feel like an idiot but I need to present this to

> > my pediatrician to get the appropriate testing and therapy done to

help

> > him.

>

> > Thank-you,

> > Carole

> >

>