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My name is Amy and I am a new member. My daughter Hannah is 3yrs. old

and has Rett Syndrome. Everything hit her very early. It starts out

with an autistic phase and loss of hand skills. Then an ugly regression

takes over but they usually become more social, the autistic phase

goes away. During regression tremors, seizures, breath holding,

hyperventilation, stiffness, are common. In the beginning ~6 mo.old

CONSTIPATION became a big issue. All of the natural methods were

useless. Watching and helping her go really was scary. But as she got

worse and I felt sure she was somewhere on the Autistic Spectrum

there were so many issues and therapies... I was a crazy peson.

When I was given the Miralax prescription the dose was 1/2 to

1 capful daily--mix with water in her bottle. I wasn't given the

impression that it needed careful if any monitoring. When I was

concerned that it was too runny or too much or I thought she might be

dehydrated noone ever showed concern. They would ask how many wet

diapers she had a day, which was always plenty(I thought too much)

Not just one doctor but 3 and 4. Said she needed it. I don't know if

they thought I was paranoid and so they just didn't listen to me or

what. 2 mo. before I started giving it to her she had left the autistic

phase and was making great progress socially, physically, and

cognitively. Everyone noticed it. It was like she was waking up.

I thought the GF/CF diet, the supplements, the therapies were working

I thought she was really going to have some kind of a life.

Then I gave her Miralax. I don't KNOW if the regression coincidently

happened almost a month after giving her Miralax. But my gut says NO

She started having tremors with weird giggling spells that would

leave her with no tone and she would go limp. She would fall straight

back like a tree if she was standing up at the couch. Seizures became

horrible and she could no longer sit up. She spent her days slumped

over on the floor occassionally lifting her head. Her eyes would

blink roll around and her face would twitch. Valproic acid didn't

touch it. My mother and aunt are both pharmacists and after 3 mo. on

Miralax they said quit giving it to her. We started pushing pedialyte

for a few days and what seemed like all day seizures became slightly

more intermittent. I took my aunt with me to discuss the EEG results

with the doctor and my aunt suggested that Miralax and nutrition might

be causing some if not all of her symptoms. The doctor said no that

this was all just part of her condition which was unknown at that time.

She was more concerned about pushing me into getting on antidepressants

than she was what I was saying about Hannah. We saw 2 doctors

(3 visits)in 2 weeks at one hospital when she was at her worst

we were just sent home (oh yeah...and keep giving the Miralax-

she needs it)2days after that visit I took her to a different hospital

because I along with everyone in my family thought she looked like she

was going to die. When we got to Texas children's hospital her blood

sugar was the 1ts thing they checked and it was 30! She stayed for 10

days until her sugar stablized with an IV running the whole time so

they hydrated her and she perked up again able to sit up and hold the

saliva in her mouth. The EEG showed no more seizures but she still

twitched and had tremors and still shows behavior that looks like

seizure activity. Still has drop episodes. Even more disturbing

we have recently found out that she has osteoperosis and medullarry

nephrocalcinosis. An ultrasound showed her kidneys covered with

calcium deposits. One of her lab results Anion Gap was 19. It is a

measure of potassium sodium and bicarb in your system. Her's shows that

she is quite acidic (explains her reflux) and when I looked up that

value online *suspect ethylene glycol poisoning came up. Those words

stood out at me MIRALAX POLYETHYLENE GLYCOL. I poisoned her. What has

happened to her kidneys, and everything points to that ..at least to

me. Even the strange pickle breath she had during our miralax time.

When she was admitted to TX CH We told a doctor about it and they

said hmmm pickles...acetic acid and they didn't know what to make of

it. At that time we still didn't have a diagnosis so they were looking

at everything. Recently I looked up acetic acid breath online and

alcohol came up. acetic acid is formed with the breakdown of alcohl.

polyethylene glycol when broken down is alcohol. since we stopped

miralax that has gone away.I know Hannah would have gone through the

regression with or without the Miralax but would it have come as soon

or been as ugly...I'll never know. I feel that it triggered and fueled

her regression and it makes me sick that not only couldn't I help

her I hurt her. Miralax is now protocol for RETT SYNDROME the new

Miracle drug. I fear for them because they already have so many issues

that they sure don't need more.Our story. Grateful to be able to

share our experience. Also hannah has a VERY dry mouth when she wakes

up. Really strange she has a film on her tongue and it is so dry that

your finger sticks to it like a freezer. Completely different texture.

Her urine is frequent and dilluted. But at night her diaper gets so

full and it is extremely concentrated. It smells so strong of ammonia

that it gives your eyes vapors. All things that have lingered since

Miralax. I look forward to reading the posts and looking for any

similarities.

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May I ask when you post can you break up the paragraphs? Your post is hard to follow in one mass.

I have heard too that the urine is very concentrated at night. Day it's freqent and diluted. Frequent giggling sounds familiar then sometimes falling backwards as if they forgot what they were doing, standing. Did your child have tendency to swing their head or shake it as well?

Did she crave a lot of water or juice and not dairy?

I'm not a doctor but trying to find anything common with other posts...

Reply-To: miralax

Date: Fri, 01 Apr 2005 16:40:08 -0000

To: miralax

Subject: Re: new members

My name is Amy and I am a new member. My daughter Hannah is 3yrs. old

and has Rett Syndrome. Everything hit her very early. It starts out

with an autistic phase and loss of hand skills. Then an ugly regression

takes over but they usually become more social, the autistic phase

goes away. During regression tremors, seizures, breath holding,

hyperventilation, stiffness, are common. In the beginning ~6 mo.old

CONSTIPATION became a big issue. All of the natural methods were

useless. Watching and helping her go really was scary. But as she got

worse and I felt sure she was somewhere on the Autistic Spectrum

there were so many issues and therapies... I was a crazy peson.

When I was given the Miralax prescription the dose was 1/2 to

1 capful daily--mix with water in her bottle. I wasn't given the

impression that it needed careful if any monitoring. When I was

concerned that it was too runny or too much or I thought she might be

dehydrated noone ever showed concern. They would ask how many wet

diapers she had a day, which was always plenty(I thought too much)

Not just one doctor but 3 and 4. Said she needed it. I don't know if

they thought I was paranoid and so they just didn't listen to me or

what. 2 mo. before I started giving it to her she had left the autistic

phase and was making great progress socially, physically, and

cognitively. Everyone noticed it. It was like she was waking up.

I thought the GF/CF diet, the supplements, the therapies were working

I thought she was really going to have some kind of a life.

Then I gave her Miralax. I don't KNOW if the regression coincidently

happened almost a month after giving her Miralax. But my gut says NO

She started having tremors with weird giggling spells that would

leave her with no tone and she would go limp. She would fall straight

back like a tree if she was standing up at the couch. Seizures became

horrible and she could no longer sit up. She spent her days slumped

over on the floor occassionally lifting her head. Her eyes would

blink roll around and her face would twitch. Valproic acid didn't

touch it. My mother and aunt are both pharmacists and after 3 mo. on

Miralax they said quit giving it to her. We started pushing pedialyte

for a few days and what seemed like all day seizures became slightly

more intermittent. I took my aunt with me to discuss the EEG results

with the doctor and my aunt suggested that Miralax and nutrition might

be causing some if not all of her symptoms. The doctor said no that

this was all just part of her condition which was unknown at that time.

She was more concerned about pushing me into getting on antidepressants

than she was what I was saying about Hannah. We saw 2 doctors

(3 visits)in 2 weeks at one hospital when she was at her worst

we were just sent home (oh yeah...and keep giving the Miralax-

she needs it)2days after that visit I took her to a different hospital

because I along with everyone in my family thought she looked like she

was going to die. When we got to Texas children's hospital her blood

sugar was the 1ts thing they checked and it was 30! She stayed for 10

days until her sugar stablized with an IV running the whole time so

they hydrated her and she perked up again able to sit up and hold the

saliva in her mouth. The EEG showed no more seizures but she still

twitched and had tremors and still shows behavior that looks like

seizure activity. Still has drop episodes. Even more disturbing

we have recently found out that she has osteoperosis and medullarry

nephrocalcinosis. An ultrasound showed her kidneys covered with

calcium deposits. One of her lab results Anion Gap was 19. It is a

measure of potassium sodium and bicarb in your system. Her's shows that

she is quite acidic (explains her reflux) and when I looked up that

value online *suspect ethylene glycol poisoning came up. Those words

stood out at me MIRALAX POLYETHYLENE GLYCOL. I poisoned her. What has

happened to her kidneys, and everything points to that ..at least to

me. Even the strange pickle breath she had during our miralax time.

When she was admitted to TX CH We told a doctor about it and they

said hmmm pickles...acetic acid and they didn't know what to make of

it. At that time we still didn't have a diagnosis so they were looking

at everything. Recently I looked up acetic acid breath online and

alcohol came up. acetic acid is formed with the breakdown of alcohl.

polyethylene glycol when broken down is alcohol. since we stopped

miralax that has gone away.I know Hannah would have gone through the

regression with or without the Miralax but would it have come as soon

or been as ugly...I'll never know. I feel that it triggered and fueled

her regression and it makes me sick that not only couldn't I help

her I hurt her. Miralax is now protocol for RETT SYNDROME the new

Miracle drug. I fear for them because they already have so many issues

that they sure don't need more.Our story. Grateful to be able to

share our experience. Also hannah has a VERY dry mouth when she wakes

up. Really strange she has a film on her tongue and it is so dry that

your finger sticks to it like a freezer. Completely different texture.

Her urine is frequent and dilluted. But at night her diaper gets so

full and it is extremely concentrated. It smells so strong of ammonia

that it gives your eyes vapors. All things that have lingered since

Miralax. I look forward to reading the posts and looking for any

similarities.

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She didn't shake or swing her head, just kind of bobbed it

in a wierd jittery way on the way down.

As far as craving anything...she doesn't communicate in anyway but

crying or smiling so it's hard to say. She drank what I gave her

if she was thirsty. When she refused a bottle it was usually because

she was too weak to suck or seizures would not let her. That's what got

her in the hospital.

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Hi--I " m going to put my posts in your text with *** marks preceding

them..read thru till you see my signature...

> My name is Amy and I am a new member. My daughter Hannah is 3yrs.

old

> and has Rett Syndrome.

***You don't happen to know a mom named Tammy with a dd with Rett's

do you? I know Tamko from another board...just curious! :-) Tamko

knows about my son's experience with miralax.

> When I was

> concerned that it was too runny or too much or I thought she might

be

> dehydrated noone ever showed concern.

**** I sadly feel that many docs do not think about the gut as being

very important. My thought is, if it was very runny for long periods

of time, she might not have been getting the nutrients she needed

from her food, because they were passing through so fast.

They would ask how many wet

> diapers she had a day, which was always plenty(I thought too much)

**** the issue with frequent urination is one that comes up now and

then with people who are reporting weird/bad effects from miralax.

For my son I remember it happening and I can't remember how long it

lasted, but I distinctly remembering increased volume and frequency.

> Not just one doctor but 3 and 4. Said she needed it.

*** of course! It's made their job easier... tasteless, odorless,

easy to mix in... the " miracle laxative " of course.

before I started giving it to her she had left the autistic

> phase and was making great progress socially, physically, and

> cognitively. Everyone noticed it. It was like she was waking up.

> I thought the GF/CF diet, the supplements, the therapies were

working I thought she was really going to have some kind of a life.

**** Good for you for researching all these avenues and seeing how

these things CAN and DO help kids with Rett's.

> Then I gave her Miralax. I don't KNOW if the regression coincidently

> happened almost a month after giving her Miralax.

**** For my son, the first few days/week on it, he hadn't changed

much personality wise, but after that I remember it being a steady

spiral downwards further and further into the spectrum. So it

doesn't surprise me to read that you saw a worsening about a month

afterwards because it was about that point that things were really

bad for him. At first I just excused away a lot of what I was seeing

but I remember about that time it was just too much to ignore or

excuse away.

> She started having tremors

**** yes, Debbie's son here had tremors with it...

with weird giggling spells that would

> leave her with no tone and she would go limp. She would fall

straight

> back like a tree if she was standing up at the couch.

*** I remember the giggling with Ethan... I don't remember him

falling but I do remember it affecting his tone and for a while, when

he wasn't having bm's and yet still getting his 17+grams per day,

whoa, his walking and tone were greatly affected!

My mother and aunt are both pharmacists and after 3 mo. on

> Miralax they said quit giving it to her.

*** Good for them for seeing the possibility that not everyone is

going to react well to miralax... just like any other medicine...bad

reactions are possible for some of the population. Question is, with

so many people on miralax, who is really looking at all of this to

see what are the real numbers of adverse reactions??

The doctor said no that

> this was all just part of her condition which was unknown at that

time.

*** I had heard the same lines " not related " ... it was such a huge

relief to me when we finally met a pedi neurologist who HAD heard of

bad reports on miralax and said that yes, what we were seeing now

couldn't be ruled out as causing it (the worsening of the sensory

issues, mild neuro issues, etc.)

>> because I along with everyone in my family thought she looked like

she

> was going to die.

*** During the days that Ethan had been holding that in and unable to

go, I thought the same thing. He was ghost white, dark circles under

his eyes, he had lost weight...he looked SO sickly. I have

photographs of it and they make my heart sink to look at them.

she has osteoperosis and medullarry

> nephrocalcinosis. An ultrasound showed her kidneys covered with

> calcium deposits.

*** SOmetime I will have to dig through some of the polyethylene

glycol info that a friend sent me... I remember it was a study with

animals, rabbits I think, and the kidneys were what was affected. Do

her kidneys look " fuzzy " on an x-ray--I'm vaguely remembering that

was mentioned in the report.

Her's shows that

> she is quite acidic (explains her reflux) and when I looked up that

> value online *suspect ethylene glycol poisoning came up. Those

words

> stood out at me MIRALAX POLYETHYLENE GLYCOL. I poisoned her. What

has

> happened to her kidneys, and everything points to that ..at least

to

> me.

******* Again, good for you for doing all that research to help you

figure it out. I'm also wondering if Owens had time to read

your post and if she has any thoughts on what might have happened

here.

I feel that it triggered and fueled

> her regression and it makes me sick that not only couldn't I help

> her I hurt her.

*** You made the best choice you could at the time, given the limited

amount of info that you had on it at the time. If we only knew...

Miralax is now protocol for RETT SYNDROME the new

> Miracle drug. I fear for them because they already have so many

issues

> that they sure don't need more.Our story.

**** It would be good for you to pass this on to various Rett's

boards because people NEED to know to WATCH for these regressions

following the onset of miralax use. SOme may never have it happen,

but it's those that do that the parents need to know that there is a

connection.

Grateful to be able to

> share our experience.

**** Thank you for your post!

Also hannah has a VERY dry mouth when she wakes

> up. Really strange she has a film on her tongue and it is so dry

that

> your finger sticks to it like a freezer.

*** I don't know what it could be but am just thinking that at night,

the body does try to do some " detoxing " with the kidneys and liver

and I'm wondering if since her kidneys are so taxed right now, that

this could be related... OR perhaps she is a mouth-breather at night

(when she's relaxed in her sleep her jaw is slightly open and so

she's breathing all night over that tongue and by morning it is so

dry...-- maybe check on her at night and hold your hand or a small

mirror near her lips to see if breath is exiting from her mouth...)

But at night her diaper gets so

> full and it is extremely concentrated. It smells so strong of

ammonia

> that it gives your eyes vapors.

*** Again, just a guess that because the body does try to move toxins

and bad things out at night while we sleep, that it's really trying

to eliminate something and it results in the strong

odor/concentration??? I don't know.

All things that have lingered since

> Miralax. I look forward to reading the posts and looking for any

> similarities.

**** there were issues that lingered on for my son post-miralax use

but I can say that time did help... he did improve over time... if

there are supplements that you can safely give to help support the

kidneys--that might be one idea, but since she has an obvious medical

diagnosis with her kidneys, you of course would want to run anything

by a doc to be safe and know that you wouldn't be causing her harm.

Continuing the dietary modifications and the supplements that you are

giving should help her system over time...

I only wish we knew what the long-term ramifications of this was, if

indeed it did make it to the kidneys...

W

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Yes, this head movement was something I saw with Ethan, too...

W

>

> She didn't shake or swing her head, just kind of bobbed it

> in a wierd jittery way on the way down.

>

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  • 2 years later...

Fire ants...when we moved to East Texas, my son and I had never seen fire ants

before. was about 10 and he clumb a tree. The fire ants " liked to have

eat him up, " as they say down there.

Colleen

Bracewell wrote:

I had a carload of boys in Florida on the way to Lake Okeechobee for a

fishin' trip. We were on Alligator Alley and saw " something " going down a

dirt road. We followed, stopped, got out and looked at that little armadillo

for a long time, since he didn't seem to object. My two sons and their

friends had never seen one before and neither had I! Now Alabama is full of

them and they're on the increase in Tennessee, too. They say armadillos and

fire ants are moving along with climate change. That was back in the early

'80's.

Old

Re: New Members

, I love you and wouldn't care if you looked like an armadillo.

New Members

I just wanted to take a time out and welcome our new members.

We've

had fourteen people join this month. Some have posted and some have

not. Which is ok of course.

Just wanted them to know we welcome them into the group and look

forward to their questions, answers and discussions!

MaC

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____________ _________ _________ _________ _________ _________ _

________

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I sprinkle a packet of aspartame on my fire ants. They go away. Even the

persistent ones who built their empire in the corner of my front steps went

away.

Aspartame was made to be ant poison. Attacks the nervous system and zaps

'em. Zaps us, too, but we're not supposed to know that.

I swore off " diet " stuff a LONG time ago!

Old

Re: New Members

, I love you and wouldn't care if you looked like an armadillo.

New Members

I just wanted to take a time out and welcome our new members.

We've

had fourteen people join this month. Some have posted and some have

not. Which is ok of course.

Just wanted them to know we welcome them into the group and look

forward to their questions, answers and discussions!

MaC

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Well, I don't really look like an armadillo, Bob, but my daughter has

described me to people as " the one who looks just like Queen " and

they come right to me!

I will send in a picture as soon as I get one that isn't a sneaky snapshot

of me in my bathrobe without my teeth!

I'm not vain.

And that's a good thing.

Old

Re: New Members

No, silly I have not seen you, but I read you every time you post on here.

You are witty, intellegent, and warm hearted. I just have had my values

rearanged in recent years. You dont have to put a picture up if you dont

want , but it wouldnt change how I think of you. Somehow, it just seems so

much more of a tight knit group, and I think one reason is our picture

gallery. Happy new year.

New Members

I just wanted to take a time out and welcome our new members.

We've

had fourteen people join this month. Some have posted and some have

not. Which is ok of course.

Just wanted them to know we welcome them into the group and look

forward to their questions, answers and discussions!

MaC

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I also drink splenda. It will take some time , but if it's bad for you, somone

will find out, and blow the whistle. Aspartame isnt worse than nicotine, or say,

whisky, but it does turn into fermaldehyde(saw it on the discovery health

channel, so it must be true)so I drink real coke when we eat out. It's a bleamin

100 calories.It's less calories than a beer.I used to drink 15 a day. You know,

when we do eat at micky d's I get a happy meal,no salt on the fries and it will

usually make me happy.

New Members

>

>

>

> I just wanted to take a time out and welcome our new members.

>

> We've

>

>

>

> had fourteen people join this month. Some have posted and some have

>

>

>

> not. Which is ok of course.

>

>

>

> Just wanted them to know we welcome them into the group and look

>

>

>

> forward to their questions, answers and discussions!

>

>

>

> MaC

>

>

>

>

>

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> ____________ _________ _________ _________ _________ _________ _

>

> ________

>

> Looking for last minute shopping deals?

>

> Find them fast with Yahoo! Search.

>

> http://tools. search.yahoo. com/newsearch/ category. php?category=

> shopping

>

>

>

>

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