RE: New to Group

[Guest guest]

Hi Jen,

My Dad was doing irrational things all last fall, then hallucinations added,

culminating with a “trigger” event and Dad in the hospital with psychosis.

We were all in a panic, thinking death was imminent.

The doctors gave him Zyprexa, Namenda & Aricept. He has been relatively

stable since January, but I do see some decline. This combination of

medicines won’t work for everyone, but if you can get the right team of

doctors and the right team of medicines for your Mom, you will likely be

able to “find a new normal”. These drugs seem like a miracle to me – I can’t

imagine what one did with a LO like this 100 years ago.

That said, it is only now that I am starting to relax with the new normal –

I have been expecting “the other shoe” to drop since January, and nothing

has happened. I’m sure something will, but I have concluded that I can’t

live in panic mode until it does, I have to get on with living for now with

“now’s normal”.

You are correct that the things your Mom said are not her. Her brain is

malfunctioning. It is not her. It is not you. It is the disease.

FYI, it took 5 days in the hospital to get Dad’s meds going – they started

them one at a time and gave time to watch for bad reactions… this is a good

practice. Some of the other folks have said “go low and go slow”… low on the

dose and slow on adding meds until you see how they react. Every person is

different… Even when they released him from the hospital, the meds had not

reached their full strength, but it seemed the combo would keep him stable,

and it has.

I hope these thought will help. Welcome to the group.

Sincerely,

Debbie in SoCal

_____

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of jentrex2000

Sent: Tuesday, June 05, 2007 12:49 PM

To: LBDcaregivers

Subject: New to group

Hello everyone. I'm a new member. My mom was diagnosed with demenia

about 4 1/2 years ago. She is 80 years old and lives right next door

to me and my husband. I work from home, so I am always available to

help my mom. I have 2 sisters that come one afternoon per week and we

recently hired someone to come into the home 3 afternoons per week.

This disease is so overwhelming and so sad. Last evening was extremely

difficult. Just after I left mom's house, about 9:30 pm, Mom went out

in the rain and flagged down a motorist. She told him I had beat her

and stole all her money! The police showed up and immediately

understood the situation, however, this was the first time I saw my

mom totally out of it. It was devasting to hear the awful things she

was saying about me to the police. Totally shocking spiteful things. I

cannot express the hurt I am still feeling. That was not my mom. She

would have never done anything like that. My sister had to come and

pick her up. She is now looking to immediately place my mom in a

facility. I know so many of you have been through this same situation.

I feel as if it's the beginning of the end. I feel so helpless. Thanks

for listening. I know you understand.

Jen

[Guest guest]

Welcome Jen! Glad you found us. Just a thought -- if this behavior is

new to your mom -- it would be wise to check to see if she has a UTI.

We've all seen differences in behaviors with our loved ones when they

have a UTI - her acting out could be a cry for help for a UTI. Check

out the links section:

http://health.groups.yahoo.com/group/LBDcaregivers/links

And go into the folder marked:

Bathroom Aid

List of sites that help caregivers with their LO's constipation, UTIs,

impactions, and diarrhea.

And into the subfolder marked:

UTI?

Does your loved one have a UTI?

[Guest guest]

jen

i can relate to exactly what you are talking about, i am an only child and my

dad asked my then fiance donnie and i to move down to florida and take care fo

him. my dad tried to pimp me out ot his friend and also swroe that i was

robbing him blind and mistreating him generally. he didnt trust me. when my

fiance went back to tenn to viist his family, daddy would be an extreme ass to

me and be taht way until donnie came home. it was awful,

donnie and i and a 24/7 caregiver kept dad home until he broke his hip and had

surgery which was the start of the end. dl d had a brace on and his mind hated

the brace and his mind was so strong that he bent a 1/4' metal bar and popped

his hip out of joint. he had to stay in the nh after taht as i was unable to

give him the quality of care that he needed anymore.

i would like to share a quick story, when daddy was in the hospital, during one

of the florida hurricanes, dad would yelll aand scream at me, calling me a

whore, a thief, a robber. i ran off in tears, but we were in hurricane lock down

so i had no where to go, i went into a nurses lounge where a very nice nurse sat

and told me that the old saying we hurt the ones we love the most , the most, is

very true esp with dementia patients, they know that a duaghter love is supposed

to be immeasureable and constant and nonchanging so he would take his

frustarationand anger out on me, because family loves you no materr what. that

helped me understand the reason i got the ugliness, he loved and trusted me the

most, it didnt always help the hurt with the words, but i did understad and deal

with it alillte different. hope this helps, hugs, sharon

---- jentrex2000 wrote:

Hello everyone. I'm a new member. My mom was diagnosed with demenia

about 4 1/2 years ago. She is 80 years old and lives right next door

to me and my husband. I work from home, so I am always available to

help my mom. I have 2 sisters that come one afternoon per week and we

recently hired someone to come into the home 3 afternoons per week.

This disease is so overwhelming and so sad. Last evening was extremely

difficult. Just after I left mom's house, about 9:30 pm, Mom went out

in the rain and flagged down a motorist. She told him I had beat her

and stole all her money! The police showed up and immediately

understood the situation, however, this was the first time I saw my

mom totally out of it. It was devasting to hear the awful things she

was saying about me to the police. Totally shocking spiteful things. I

cannot express the hurt I am still feeling. That was not my mom. She

would have never done anything like that. My sister had to come and

pick her up. She is now looking to immediately place my mom in a

facility. I know so many of you have been through this same situation.

I feel as if it's the beginning of the end. I feel so helpless. Thanks

for listening. I know you understand.

Jen

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

Absolutely consider an " asymptomatic " UTI (I'd argue that flagging

down passing motorists is a symptom, but hey, I'm not a doctor who

gets to define these things).

MAJOR alterations in state are not necessarily dementia; they can be

acute delirium, and a medical emergency. People don't generally just

flip out randomly for no reason, and " disease progression " should be

considered what you end up with, not what you start with.

As I've said about six zillion times of late, psychostimulant drugs

can help. A lot. But rule out other causes first.

E

[Guest guest]

Hello dear Jen, and a big warm welcome to the LBD group. The best!

I am so sorry about your feelings being hurt by your Mom. From there I won't

say any

more, as others have told you by now of their experiences. Our precious

Sharon has suffered un- bearably from her father, which by now I am sure you

know. She remains on the list to help others just like you. I am proud of her

for

that. I can hardly believe what she has been through, but she

has a big heart and reaches out to help others.

Jen, I haven't reached the point that my husband tells too many bad things

about me. He talks to the doctor about things which made me look shocked and

wide eyed, but not so terrible that it hurt as in your case. I was sure the

doctor knew. It hasn't happened with the police. Thank goodness.

I am so far behind in my mail I may never catch up. But, dear girl welcome

to a good home for crying or telling jokes on your Mom. We all do it.

Like my Mom. She raised eleven of us. We lived on an Island with no

plumbing. We had a " slop jar " and a potty in the house in a big hall. She was

used to

getting the kids up at night to use either, according to the size of the

child.

Well, in the nursing home another dementia patient was moved into Mama's

room. The other patient needed to use the toilet. Being the Mama my Mama was,

she dutifully got the waste basket

and took it and the other patient into the hall to use it. People walking

by, etc, never mind. These two dementia patients were in their world using the

potty. The other patient was on the waste basket when a nurse came running

down the hall.

I laughed until I nearly cried. My sister said " IMOGENE! " She is your

mother!! I said, " Our Mother would have laughed at the same thing. " Finally she

agreed. I told her they were in their world

and were no in pain.

So dear laugh when you can. It is hard when you are the target. But, in

years to come you will see some humor in what your mother did. Keep records,

and

write a book for others to learn.

Love a bunch from an old Granny age 75,

Imogene

Caregiver for my True Texas Gentleman husband of 36 years. He has LBD with

Parkinsonism.

In a message dated 6/5/2007 4:14:40 PM Central Daylight Time,

jentrex@... writes:

Hello everyone. I'm a new member. My mom was diagnosed with demenia

about 4 1/2 years ago. She is 80 years old and lives right next door

to me and my husband. I work from home, so I am always available to

help my mom. I have 2 sisters that come one afternoon per week and we

recently hired someone to come into the home 3 afternoons per week.

This disease is so overwhelming and so sad. Last evening was extremely

difficult. Just after I left mom's house, about 9:30 pm, Mom went out

in the rain and flagged down a motorist. She told him I had beat her

and stole all her money! The police showed up and immediately

understood the situation, however, this was the first time I saw my

mom totally out of it. It was devasting to hear the awful things she

was saying about me to the police. Totally shocking spiteful things. I

cannot express the hurt I am still feeling. That was not my mom. She

would have never done anything like that. My sister had to come and

pick her up. She is now looking to immediately place my mom in a

facility. I know so many of you have been through this same situation.

I feel as if it's the beginning of the end. I feel so helpless. Thanks

for listening. I know you understand.

Jen

************************************** See what's free at http://www.aol.com.

[Guest guest]

hi celine,

i am so sorry you had to find us, but so glad you did, you are now part of our

family.

my dad has completed his lbd journey in 9/05. and it was a terrible journey for

me, i am an only child and my parents divorced in 1988. my then fiance and i

moved ot florida , from tenn to take care of daddy.

to answer some of your questions.

uti's for some reason seem to be common in lbd'ers. and they do make our lo's

(loved ones)go off teh deep end, with anxiety adn aggression. so any time

aggression becomes an issue always have her checked for a uti,

one of the most important 'rules' of cg (caregiving or caregiver) for an lbd'er

is to think like a turtle go low and go slow. they-cannot for some reason

handle too many changes in medicines at one time. th ey react very differently

to medicines. i would suggest a journal with your mom's syptoms and reactions

and changes good and bad. you may see a pattern develop.

as for showers my dad grew up when you took showers on sunday to get ready for

teh school week adn he only wanted to take his showers on sunday. even when he

messed on himself he wanted us to wait. till sunday. bribes worked for dad

with a shower, but doesnt work for many people i would give dad a choice, do you

want your chocolate bar or lunch before you shower or after, and he would always

say- after. i would remind him that he ssaid he would take his shower after

lunch or snack. he usually did take a shower. but this hasnt worked for others

tho.

are you wanting her to take a shower everyday or just when she needs one. it

may be easier to just let her take one when she needs one??

my dad did fairly well on exelon but after falling and breaking his hip his

journey went very quickly.

have you tried calling teh council of aging and /or the elders affairs offices.,

they both were very very helpful to me. i was able to get supplies for daddy on

federally funded programs and was able to get respite care as well.

sounds like you may have a good support system for your dad that i s good, as cg

for an lbd'er is very very trying. with lbd they are here one minute and in

another time /era the next. daddy would say as i was wiping his butt, ' do you

remember yesterday wehn i was changing your diaper and now today you are helping

me with my bottom.

halluciantions are very common with lbders,. are these hallucinations that

sscare your mom or just 'friendly ' hallucinations meaning things that dont

threaten here, ou like does she see/hear animals or small children. you have

to realize that you cannot convince her that she is hallucnating or that youdont

see the same things as she does. she is convinced she is seeing htem and trying

to tell her she is wrong that she is imagining it, is well, it would be easier

for you to move a brick wall. lol.

for aggression and agitation my dad did fairly well on zoloft, he started out

with 50 mg nitely to help him sleep better and with teh aggression. each lbd'er

is different so it is mostly trial and error. if you go to the groups home page

you can search teh files that has done such a good job, there are files

about making a house better for an lbd'er to list of medicines that are 'no'no's

but there are people taht can take some no no meds. read thru some of the

files, but dont overwhelm yourself, do a few at a time. also, print out as much

as you can to help you and your siblings and your dad to help your mom . also

this group is for you and your family, feel free to yell cry, scream, vent,

share stories, get mad, cry, what ever it takes for us to help you we are here

for you anything we can do, we can help you, please make sure your dad takes

care of himself. caregivers tend to forget their own care because they are so

overwhelmed in taking care of their loved one.

good luck and hugs, sharon

yahoo.com> ou cawrote:

Hi Everyone!

My name is Celine and I just subscribed to this group. I live in Grand Island

NE. A city of about 42,000 right smack in the middle of the US.My mom Margaret

is 77 and was disagnosed with Alzheimers a little over 2 years ago. She lives

at home with my dad Bernard who is legally blind. We have been able to keep her

at home because my dad is so dedicated to her and my family and I take turns

going over every day to give him a break in the evenings. We tried having

someone come in a few hours to give him a break but she was adamant about anyone

coming in. We have taken her to a neurologist about 30 minutes from here and she

diagnosed my mom with Diffuse Lewey Body Disease. I am 41, single, a librarian

and I have a brother and sister that live closeby.

We are barely hanging on with several issues looming over our heads. My mom is

taking Seroquel and Namenda, one mild antidepressant,and a few other things for

heart and acid reflux.

Current issues:

We can't get her to shower very often.

Can't get her to the doctor she gets hysterical won't take meds.

Very jealous....thinks her own kids are the object of my dad's attention.

Hallucinates (sees things, has wild dreams sometimes...tried to hit my dad with

a heavy metal cross)

Nags often and belittles my dad.

Has bladder infections quite a bit and those really make her crazy.

Has serious depression where she talks about dying, running away...has a crazy

look in her eyes.

Sleeps until 12 or 1 each day. Goes to sleep about 11;30. Once in a while will

stay up all night.

We are looking for a support group or a way to get her to accept someone coming

in to help my dad. Do most of you have your loved ones at home. Boy I have a lot

to learn about this disease. I know the doctors here don't have a clue about

this disease. Sad.

If you know of any resources, or ANY help it would be sooo greatly appreciated.

I feel for all of you that are dealing with this sad, disease.

God Bless!

Celine in Grand Island NE

spikergirl39@...

________________________________________________________________________________\

____

Bored stiff? Loosen up...

Download and play hundreds of games for free on Yahoo! Games.

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[Guest guest]

Hi June, Go Big Red! Sorry to hear about your husband too. Does he have LBD? My

mom was diagnosed with AD. We took her to a neurologist in Hastings, Dr.

Lorraine . The AD support group recommended her. She seems pretty good if

we can just get my mom down there. She doesn't like to go anywhere. She is

sucking the life out of us. Her normal disposition is a sweet lady so it's hard.

This group seems to be a blessing. I have received a couple of emails from

people already and hopefully one day I will be able to give back too. I wonder

if there are LBD support groups? I think this one will be perfect though because

I love to email.

Thanks for the nice reply.

God Bless! and Yes, I have been to Holdrege, and Minden.

Celine

Celine D. Stahlnecker

spikergirl39@...

Re: New to Group

Celine: Welcome to the group. I just wanted to tell

you that I'm a native Nebraskan, born and raised near

Alma, NE and then lived near Holdrege, Loomis, Axtell,

and last in Minden. In 1973, we moved to Kansas for

my husband's job, but we have bunches of relatives all

over NE and remain Big Red fans.

I am sorry for your reason to be here. My husband

developed short-term memory loss in 1999 at age 69.

He was dx'd as AD and began Aricept, which held him

pretty good until 2003 or so. He finally had to quit

working in 2004, and that fall I also had to quit

working because I could no longer leave him alone. It

is a terrible job, full-time caretaking, and it really

takes it out of the caretaker. I hope your father ill

be able to get some help. I am curious who the

neurologist was that dx'd your mother. Was she from

Hastings? You were fortunate to find one who knew

anything about it, as so many don't.

Most of the symptoms you are describing are typical;

frequent UTIs, paranoia, depression, sleeping too much

or too little, not wanting to take showers and do

other personal care.

You will get lots of info from the group, so be sure

you write in all your questions and her progress.

Just about anything you need to know, you will be able

to find someone who knows something about it.

--- celine stahlnecker <spikergirl39@ yahoo.com> wrote:

> Hi Everyone!

> My name is Celine and I just subscribed to this

> group. I live in Grand Island NE. A city of about

> 42,000 right smack in the middle of the US.My mom

> Margaret is 77 and was disagnosed with Alzheimers a

> little over 2 years ago. She lives at home with my

> dad Bernard who is legally blind. We have been able

> to keep her at home because my dad is so dedicated

> to her and my family and I take turns going over

> every day to give him a break in the evenings. We

> tried having someone come in a few hours to give him

> a break but she was adamant about anyone coming in.

> We have taken her to a neurologist about 30 minutes

> from here and she diagnosed my mom with Diffuse

> Lewey Body Disease. I am 41, single, a librarian

> and I have a brother and sister that live closeby.

>

> We are barely hanging on with several issues looming

> over our heads. My mom is taking Seroquel and

> Namenda, one mild antidepressant, and a few other

> things for heart and acid reflux.

>

> Current issues:

> We can't get her to shower very often.

> Can't get her to the doctor she gets hysterical

> won't take meds.

> Very jealous....thinks her own kids are the object

> of my dad's attention.

> Hallucinates (sees things, has wild dreams

> sometimes... tried to hit my dad with a heavy metal

> cross)

> Nags often and belittles my dad.

> Has bladder infections quite a bit and those really

> make her crazy.

> Has serious depression where she talks about dying,

> running away...has a crazy look in her eyes.

> Sleeps until 12 or 1 each day. Goes to sleep about

> 11;30. Once in a while will stay up all night.

>

> We are looking for a support group or a way to get

> her to accept someone coming in to help my dad. Do

> most of you have your loved ones at home. Boy I have

> a lot to learn about this disease. I know the

> doctors here don't have a clue about this disease.

> Sad.

>

> If you know of any resources, or ANY help it would

> be sooo greatly appreciated. I feel for all of you

> that are dealing with this sad, disease.

>

> God Bless!

> Celine in Grand Island NE

> spikergirl39@ yahoo.com

>

>

>

>

____________ _________ _________ _________ _________ _________ _

> Bored stiff? Loosen up...

> Download and play hundreds of games for free on

> Yahoo! Games.

> http://games. yahoo.com/ games/front

>

> [Non-text portions of this message have been

> removed]

>

>

____________ _________ _________ _________ _________ _________ _Ready for the

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[Guest guest]

Hi Celine. Welcome to the group. My first comment is that your family

should be crushing her meds and hiding them in her food in order for

her to take them.

http://www.dynamic-living.com/medi_crush.htm

The other comment is that the two things you should have on hand are:

* the LBD brochure (for hard copies email lbda@...) (pass around

freely)

http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

* Dr. Bradley Boeve's Diagnostic Review & Medicine Management:

http://www.lewybodydementia.org/docs/DLB-BoeveContinuum04.pdf

* Dr. Gomperts transcript of a Q & A session we had, he answered

many of the most common questions that we have:

http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

[Guest guest]

Ooops. I guess that makes it 3 things... below...

Also -- another reminder of what's available on the board:

Different sections on the LBDCaregivers Group Yahoo board:

Main board:

http://groups.yahoo.com/group/LBDcaregivers/

(Read your emails via the board vs. your `in box'. And get into all

the different sections that are available on the website. Also you

can search messages in the archives here -- have a med. in question?

Search the name of the med. and all the posts related to that med.

will pop up)

Links Section:

http://health.groups.yahoo.com/group/LBDcaregivers/links

(Tons of links that is continuously a `work in progress' – all these

links are useful to the caregiver. A variety of categories neatly

organized into folders – what topic are you interested in? Find the

folder and within it find numerous links to other websites for

additional information.)

Files Section:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

(Read other caregiver's stories, read about the good & bad drugs

here, print a " companion card " from here (cards to hand out in public

areas about your LO's behavior), find the locations of other

caregivers who are possibility living in your immediate area, etc.)

Database Section:

http://health.groups.yahoo.com/group/LBDcaregivers/database

(Suggested reading, learn the common denominators about our loved

ones, medical referrals, nursing home referrals, bibliography of LBD

in literature and film, etc.)

Photos Section:

http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos

(Put a face to a name.)

Polls Section:

http://health.groups.yahoo.com/group/LBDcaregivers/polls

(Several polls running re: LBD)

>

> Hi Celine. Welcome to the group. My first comment is that your

family

> should be crushing her meds and hiding them in her food in order

for

> her to take them.

> http://www.dynamic-living.com/medi_crush.htm

>

> The other comment is that the two things you should have on hand

are:

> * the LBD brochure (for hard copies email lbda@...) (pass around

> freely)

> http://www.lewybodydementia.org/docs/LBDAbroch_webLGL.pdf

>

> * Dr. Bradley Boeve's Diagnostic Review & Medicine Management:

> http://www.lewybodydementia.org/docs/DLB-BoeveContinuum04.pdf

>

> * Dr. Gomperts transcript of a Q & A session we had, he

answered

> many of the most common questions that we have:

> http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

>

>

>

[Guest guest]

Sharon,

God Bless you for your reply!

We have tried just letting her shower once or twice a week and washup the other

times. I guess if we could get her to not be so paranoid and to see the doctor

that would be lots of help. I like the journal idea. Thanks for making me feel

welcome and NOT ALONE.

Celine

Celine D. Stahlnecker

spikergirl39@...

[Guest guest]

Thanks I will do that. It is OVERWHELMING ON EMAIL BOX. Holy cow and thanks for

the help explaining the parts of the site.

Celine D. Stahlnecker

spikergirl39@...

[Guest guest]

Thanks I will print these out for my family too. C

Celine D. Stahlnecker

spikergirl39@...

[Guest guest]

Thank you Jeanie for the info and thoughts on our situation.

So-My daughter had been complaining of stomach pains on and off for

months-actually through the last year….but I kind of chalked it off…would

tell her to drink more water….(she never drinks water I don’t know

why!) and when she would poop she always seemed to feel better….sometimes

I would tell her to go…etc. Anyway-she would complain of her sides

hurting and that they would feel better after going to the bathroom. We ended

up in the ER b/c she was on the floor in pain and complaining of her stomach

hurting around her belly button. I was worried about anything

else-appendix-etc. so to rule that out we went in. They suggested MoM….she

took it and nothing….a little watery bm…then I did the enema which gave

more water bm and a million other things to try and get her going MORE-she

already goes daily so it never occurred to me she could be backed up….they

said if her stomach pains did not clear up-to follow up with the Ped. So about

a week later I did b/c it was still not going away….that is when we went

in to the Ped. the day after Christmas and they said-oh-very common-take

Miralax for 1 mnth. and clean her out good- but after one dose and some

research I knew we could not do anymore miralax.

I have spent a lot of time thinking about my daughter’s

stomach pains-they come and go all day for months-sometimes it is so bad (just

recently) she can’t sleep at night-we took her in b/c she was on the

floor in pain-she poops daily but the ER Dr said it was compacted-she has had

yeast in her gut in the past (although I think we got it taken care of) and as

an infant/toddler she had a major distended belly (which I attribute to yeast) as

well as GERD and she is now GFCFSFSF for over a year. Often after she poops,

she will say her sides feel better but when she is having the horrible stomach

pains, she complains it is her naval/around her belly button area so I am

guessing after she goes, she feels some relief everywhere. Also-her stomach

pains come on immediately after eating-she can eat raw non dairy vegan ice

cream and get stomach pains from 2 bites…..and she always has a bm right

after a meal which made me think if she was compacted, only what was right at

the end was emptying? She is not and has not been on any med’s for years…

I am so new to all of this. I have been reading up on the links

and miralax files-I have no problem not using it but just in case my daughter

really is compacted-I want to find the best route to help her and understand

why this is happening to her. Because it has been going on for so long, I don’t

think it is a bug. Any thoughts?

Thanks so much,

J

From:

miralax [mailto:miralax ] On Behalf Of jeanie

ward

Sent: Sunday, December 28, 2008 4:43 PM

To: miralax

Subject: Re: New to Group

,

Welcome! You know it really amazes me that they handle a

problem that probably took days or weeks to occur, and try to handle it in a

couple of hours at the hospital? This is why ex-lax states, over night

relief!

Everyone has stool in there! They tend to look at an

ex-ray and say, " look there's stool " Yea! there's stool, it's the

colon? I would tend to think her tummy pain is probably from something she

ate? I've had tummy pain that I ended up in the ER with and it was diagnosed

as gastritis, which in lay terms is a tummy bug, or bad bacteria that was

eaten, i.e. food borne illness....................although, if she's been on

an antibiotic lately?, this can be the culprit. Where abouts in the tummy was

it hurting?

They aren't aware of the side affects Miralax causes

because they don't have time to submit about the drugs they are giving

because they are too busy making too much money!

I'm sooo against Miralax and I did take the time to look,

and I'll show you why..........................read, really read the FDA

adverse reactions, you need to scroll from left to right to see the dose,

age, etc.

http://health.groups.yahoo.com/group/miralax/files/

Go with your gut..........don't give your child a

medication that's made up of a string of EG ethylene glycol (Antifreeze)

molecules................good thing you found us! There are children that

have died and the FDA isn't doing a darn thing about it................. even

though I've petitioned them twice!

Jeanie

From: momof2hrts

Subject: New to Group

To: miralax

Date: Sunday, December 28, 2008, 1:43 PM

Hello,

I am new to this group. My 6 yr old daughter ended up in the ER

w/serious stomach pains...the results were compacted/constipat ion. She

goes to the bathroom daily-if not more so I was shocked. They had her

take Milk of Magnesia (we did almost the entire bottle with nothing to

show) and then we did an enema which emptied a little..we also did

prunes, prune juice, beans, lots of water, and then some little gentle

tummies laxative stuff. After all of this, she continued to have pain

so we followed up with the Dr. and they put her on miralax. I gave her

ONE dose yesterday and then went online to research it...(yea-kind of

backwards I know.) I came across an article that led me to this group.

I joined and we will not be doing any more miralax. My daughter is

also GFCFSFSF and a million other allergies and also has SPD. Clearly

we are very careful about what she eats and puts into her body. So we

are looking into why my daughter is having these issues and what I am

supposed to do about it now. I don't know HOW to get everything out of

her or WHY she is even constipated. She has been on the GFCF (And more

diet) for about a year now.

Thanks for any help or suggestions,

[Guest guest]

If she goes right after a meal on a normal basis, then no, this would not be impacted or backed up...............If it's been going on this long, then no it's probably not a bug..............With her being on a vegan diet complicates things a bit because I don't know what her normal diet is? Is there anything you can think of in the last year, when this started that you introduced? different bread? Milk? Something is clearly bothering her...........

Sounds like her tummy is having a hard time digesting something? What's in this non-dairy Ice cream? If that's when it happens........... that's what it is..............discontinue what's in that product completely and see if it goes away.................I was addicted to French Vanilla Coffee Mate Non-Daily creamer, it makes the best cup of coffee, but later found out, it was the coffee mate that was making me feel dizzy through-out the day..................here's what to go by:

What did I eat right before the onset?

Keep a diary of what is eaten and when it happens..........

What did I change? as far as introducing new foods.............

When I hear nondairy........... it screams poly sorbate 80, a bad chemical

Jeanie

From: momof2hrts <doanlawroadrunner (DOT) com>Subject: New to GroupTo: miralax@yahoogroups .comDate: Sunday, December 28, 2008, 1:43 PM

Hello,I am new to this group. My 6 yr old daughter ended up in the ERw/serious stomach pains...the results were compacted/constipat ion. Shegoes to the bathroom daily-if not more so I was shocked. They had hertake Milk of Magnesia (we did almost the entire bottle with nothing toshow) and then we did an enema which emptied a little..we also didprunes, prune juice, beans, lots of water, and then some little gentletummies laxative stuff. After all of this, she continued to have painso we followed up with the Dr. and they put her on miralax. I gave herONE dose yesterday and then went online to research it...(yea-kind ofbackwards I know.) I came across an article that led me to this group.I joined and we will not be doing any more miralax. My daughter isalso GFCFSFSF and a million other allergies and also has SPD. Clearlywe are very careful about what she eats and puts into her body.

So weare looking into why my daughter is having these issues and what I amsupposed to do about it now. I don't know HOW to get everything out ofher or WHY she is even constipated. She has been on the GFCF (And morediet) for about a year now. Thanks for any help or suggestions,

[Guest guest]

Ok I will look into this….she is not taking/eating anything

not natural but she is gluten/casein, sugar and soy free. The only sweeteners

she eats are agave and stevia instead of sugar but nothing else and she can’t

really eat anything that is processed b/c it is hard to find anything free of

all of the things it needs to be free of so mostly fresh fruits/veggies/meats/etc.…..The

non dairy ice cream is all natural-coconut, agave, I can’t think-like 5

or 6 ingredients….it is a raw organic ice cream with simple ingredients.

I will look into keeping a food diary. I guess I just feel

confused about why he said she was compacted? She had even pooped right before

we went to the ER. I just want to make sure I am not missing anything.

Thanks so much J

From:

miralax [mailto:miralax ] On Behalf Of jeanie

ward

Sent: Sunday, December 28, 2008 6:37 PM

To: miralax

Subject: RE: New to Group

If she goes right after a meal on a normal basis, then no,

this would not be impacted or backed up...............If it's been going on

this long, then no it's probably not a bug..............With her being on a

vegan diet complicates things a bit because I don't know what her normal diet

is? Is there anything you can think of in the last year, when this started

that you introduced? different bread? Milk? Something is clearly bothering

her...........

Sounds like her tummy is having a hard time digesting

something? What's in this non-dairy Ice cream? If that's when it

happens........... that's what it is..............discontinue what's in that

product completely and see if it goes away.................I was addicted to

French Vanilla Coffee Mate Non-Daily creamer, it makes the best cup of coffee,

but later found out, it was the coffee mate that was making me feel dizzy

through-out the day..................here's what to go by:

What did I eat right before the onset?

Keep a diary of what is eaten and when it happens..........

What did I change? as far as introducing new foods.............

When I hear nondairy........... it screams poly sorbate

80, a bad chemical

Jeanie

From: momof2hrts <doanlawroadrunner (DOT) com>

Subject: New to Group

To: miralax@yahoogroups .com

Date: Sunday, December 28, 2008, 1:43 PM

Hello,

I am new to this group. My 6 yr old daughter ended up in the ER

w/serious stomach pains...the results were compacted/constipat ion. She

goes to the bathroom daily-if not more so I was shocked. They had her

take Milk of Magnesia (we did almost the entire bottle with nothing to

show) and then we did an enema which emptied a little..we also did

prunes, prune juice, beans, lots of water, and then some little gentle

tummies laxative stuff. After all of this, she continued to have pain

so we followed up with the Dr. and they put her on miralax. I gave her

ONE dose yesterday and then went online to research it...(yea-kind of

backwards I know.) I came across an article that led me to this group.

I joined and we will not be doing any more miralax. My daughter is

also GFCFSFSF and a million other allergies and also has SPD. Clearly

we are very careful about what she eats and puts into her body. So we

are looking into why my daughter is having these issues and what I am

supposed to do about it now. I don't know HOW to get everything out of

her or WHY she is even constipated. She has been on the GFCF (And more

diet) for about a year now.

Thanks for any help or suggestions,

[Guest guest]

Have you considered getting a second opinion regarding the impaction?

Perhaps her gut is in a state of dysbiosis - an imbalance in the

natural gut flora. Coconut milk (and coconut oil) has some natural

antifungal activity and, while very good for people generally, can

cause yeast " die off " issues for some people with candida overgrowth.

Maybe she has trouble with something else in her diet (I know, you've

been trying and restricting a lot this past year - it truly can be a

mystery!). Have you considered trying the SCD (specific carbohydrate

diet) or paleo diet? Some people have a really hard time with grains

in general and perhaps when she went GF (and all her other

restrictions), she started getting more rice, corn, or other grain

that is also bothersome to her. My boys and I are

GF/CF/Soy-free/egg-free and generally corn-free. But, as we tried out

different " GF " flours and grains, we found we cannot do sorghum,

quinoa, or millet. We also get a great deal of distress from the bean

flours (e.g., garbanzo, fava). (We can eat properly soaked and

prepared beans - and I've never tried soaking the bean flour or

soaking beans and making my own flour.)

Maybe your DD is having trouble with one of the GF grains? We ended

up being essentially grain-free for a while and slowly trying one " GF "

grain/flour at a time.

Even with our dietary restrictions (which were an amazing

improvement!), my DS#1 (4 yrs) still needs 500mg magnesium and about

500mg vitamin C every day to keep him going *almost* daily. We also

do a mineral supplement for children (with zinc, iodine, selenium, and

a few other minerals in amounts appropriate for children). We keep

working on reintroducing probiotics, but are having to go slowly on

this one - he used to tolerate big doses just fine, but for some

reason (suspecting yeast) he's having a hard time with them these days.

What really got my DS#1 headed down the poop-almost-every-day-path was

(in addition to GF/CF/EF/SF/corn-free) being grain-free (then slowly

adding in one GF grain at a time to see how he reacted), magnesium (we

currently use a capsule form of magnesium supplement, but initially

used MOM, then mag citrate powder from Kirkman lab) and vitamin C.

We've also used senna (e.g., Senokot) during tough patches. We tried

aloe vera juice - others here seem to have more success with that than

my son did.

Epsom salt baths and baking soda baths also really made a difference

in the beginning and now whenever we have a dietary mishap.

You can try checking her urine and saliva pH - my DS#1's pH is always

out of whack after a dietary infraction - that sets him on a path to

painful poops and crystals in urine (seemingly an oxalate dump-like

phase) and keeping his pH in check really helps during those times.

(baking soda & salt in water to drink (away from meals) can help in

addition to the baking soda in the bath).

Hang in there! You're doing a great job trying to figure all this out

& I know how hard these dietary restrictions can be! You'll get to

the right combination of dietary interventions and supplements at some

point - just have to hang in there!!

best,

>

> From: momof2hrts <doanlawroadrunner (DOT) com>

> Subject: New to Group

> To: miralax@yahoogroups .com

> Date: Sunday, December 28, 2008, 1:43 PM

>

> Hello,

>

> I am new to this group. My 6 yr old daughter ended up in the ER

> w/serious stomach pains...the results were compacted/constipat ion. She

> goes to the bathroom daily-if not more so I was shocked. They had her

> take Milk of Magnesia (we did almost the entire bottle with nothing to

> show) and then we did an enema which emptied a little..we also did

> prunes, prune juice, beans, lots of water, and then some little gentle

> tummies laxative stuff. After all of this, she continued to have pain

> so we followed up with the Dr. and they put her on miralax. I gave her

> ONE dose yesterday and then went online to research it...(yea-kind of

> backwards I know.) I came across an article that led me to this group.

> I joined and we will not be doing any more miralax. My daughter is

> also GFCFSFSF and a million other allergies and also has SPD. Clearly

> we are very careful about what she eats and puts into her body. So we

> are looking into why my daughter is having these issues and what I am

> supposed to do about it now. I don't know HOW to get everything out of

> her or WHY she is even constipated. She has been on the GFCF (And more

> diet) for about a year now.

>

> Thanks for any help or suggestions,

>

>

>

[Guest guest]

Have she tried digestive enzymes? My 'aha' moment was when my son

seemed to do so much better when he was having quite a bit of

pineapple. He takes Kirkman EnzymComplete with DPP-IV, although I

have tried other brands too.

2nd thought is gall bladder problems -- and for that I'd suggest

Herb Pharm Healthy Liver Tonic

http://www.iherb.com/ProductDetails.aspx?pid=5189289662434911809 & at=0

Other thought -- I have a friend whose daughter had a twist or kink

in her small intestine that caused a ton of pain -- sounds similar

to your daughter's reaction. However if it that is the situation

they would have seen it on the xray

http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.j

sp?requestURI=/healthatoz/Atoz/ency/intestinal_obstructions.jsp

Other than that you have me stumped!

HTH

>

> From: momof2hrts <doanlawroadrunner (DOT) com>

> Subject: New to Group

> To: miralax@yahoogroups .com

> Date: Sunday, December 28, 2008, 1:43 PM

>

> Hello,

>

> I am new to this group. My 6 yr old daughter ended up in the ER

> w/serious stomach pains...the results were compacted/constipat

ion. She

> goes to the bathroom daily-if not more so I was shocked. They had

her

> take Milk of Magnesia (we did almost the entire bottle with

nothing to

> show) and then we did an enema which emptied a little..we also did

> prunes, prune juice, beans, lots of water, and then some little

gentle

> tummies laxative stuff. After all of this, she continued to have

pain

> so we followed up with the Dr. and they put her on miralax. I gave

her

> ONE dose yesterday and then went online to research it...(yea-kind

of

> backwards I know.) I came across an article that led me to this

group.

> I joined and we will not be doing any more miralax. My daughter is

> also GFCFSFSF and a million other allergies and also has SPD.

Clearly

> we are very careful about what she eats and puts into her body. So

we

> are looking into why my daughter is having these issues and what I

am

> supposed to do about it now. I don't know HOW to get everything

out of

> her or WHY she is even constipated. She has been on the GFCF (And

more

> diet) for about a year now.

>

> Thanks for any help or suggestions,

>

>

>

[Guest guest]

,

some people react to things that are natural.................one needs to look at what she's eating that a normal diet doesn't contain and/or what creates the onset of the pain............

could it be this? That's hard for her to digest? The very middle of a garlic clove, is very hard to digest..............also did you know that stevia is a diaretic?

http://en.wikipedia.org/wiki/Agave

Stevia has been linked to gastrointestinal disorders.................

http://www.truthaboutabs.com/artificial-sweeteners-natural-stevia.html

I'm only looking at what you've told me about pertaining to her diet, it may be something else that's causing it or it could be something serious

Chiro's are good at this..........my nephew had asthma and he went to the er and they were going to put him on those inhalers...............he evaluated his diet and did some kind of test on the computer and found out he was allergic to the preservatives in lunch meats, he recommended that he stay away from all preservitives for 3 months.............he was absolutely right............. doesn't have asthma any more...........viola!

Good luck to you and your dd..............

Kirkman labs makes a chewable probiotic that contains xylitol and it works like a laxative and helps replenish the good bacteria, this is the only thing that has helped us..........I truely believe if there's truely a problem, you'll be taking laxatives til the cows come home unless you find the problem, i.e. bacteria imbalance

http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@184@Product_Group_ID@...

It's worth a try..............I swear by them

Jeanie

From: momof2hrts <doanlawroadrunner (DOT) com>Subject: New to GroupTo: miralax@yahoogroups .comDate: Sunday, December 28, 2008, 1:43 PM

Hello,I am new to this group. My 6 yr old daughter ended up in the ERw/serious stomach pains...the results were compacted/constipat ion. Shegoes to the bathroom daily-if not more so I was shocked. They had hertake Milk of Magnesia (we did almost the entire bottle with nothing toshow) and then we did an enema which emptied a little..we also didprunes, prune juice, beans, lots of water, and then some little gentletummies laxative stuff. After all of this, she continued to have painso we followed up with the Dr. and they put her on miralax. I gave herONE dose yesterday and then went online to research it...(yea-kind ofbackwards I know.) I came across an article that led me to this group.I joined and we will not be doing any more miralax. My daughter isalso GFCFSFSF and a million other allergies and also has SPD. Clearlywe are very careful about what she eats and puts into her body.

So weare looking into why my daughter is having these issues and what I amsupposed to do about it now. I don't know HOW to get everything out ofher or WHY she is even constipated. She has been on the GFCF (And morediet) for about a year now. Thanks for any help or suggestions,

[Guest guest]

Hi ,

Sorry to not get back to this message sooner.

About pH - I used the pH strips from pH-Ion (http://www.ph-ion.com/index.asp?

PageAction=VIEWCATS & Category=205) - ordered them from Amazon.com but I think you

can order at the pHion site. I think Whole Foods and some HFSs sell pH strips

as well (not

necessarily this brand) and you can ask a pharmacist at your local drugstore as

well. If

you ask the pharmacist, you may need to ask for litmus paper - our local

pharmacy's

order catalog didn't list " pH paper or strips " but did list " Litmus paper. "

However, I like

the accuracy and specificity in pH range of the pHion strips. you can check

urine and

saliva pH. There's a lot of info with the pHion strips and

on the internet about body pH and correcting it.

Additionally, there are several posts in the archives here by LeeAnn

( " mommtlc " ), Bonnie,

myself and others on the pH issue.

Basically I found for my oldest son (now 4, then about 2.5 yrs old) that prior

to going GF

he did have a generally constantly acidic state. He had crystals in his urine,

stinging/burning when he pooped and a red ring around his anus for a day or two

after

each BM, and he had a lot of bed wetting and even daytime pee accidents, despite

being

quite proficient at peeing on the potty (he still doesn't poop on the potty or

toilet - but at

least he's pooping!).

I want to mention also that he NEVER had Miralax - NEVER. I think that these

issues may

be exacerbated by the use of Miralax, but I believe that food intolerances and

GI

inflammation are a big cause of acidic body conditions. Once we went GF (mind

you, he

was already casein-free, egg-free, soy-free, corn-free), his pH began to

stabilize, the

painful poops eased up, the urine crystals started to clear up and he had less

bedwetting/pee accidents. I noticed that any time we had a dietary

infraction/accidental

gluten (or one of our other problematic foods), his pH went acidic again, poop

was painful

again, crystals in urine again.

during these episodes, I give him baking soda in his Epsom salt baths, I try to

get him to

drink bicarb and salt in water (baking soda and sea salt) - away from meals, and

have him

drink fresh squeezed lemon juice in water with a little stevia. I also give him

extra

magnesium and extra vitamin c.

LeeAnn has posted a lot info on helping fix pH at this group and you may also

want to

check out the Vitamin K yahoo! group - lots of info there about pH, oxalates,

gut healing,

etc.

Thanks for the link to Diane Craft's site - I'll check it out!

best,

p.s. - My acidic condition also improved upon going GF - as did many other

urinary

symptoms that I didn't even actually realize were 'symptoms' until I started

paying

attention (e.g., urgency to go several times a day and night (I thought I was

either

pregnant or had a UTI many different times!), never checked my own urine for

crystals

though!, bladder discomfort, etc.)

>

> ,

>

>

>

> Where would you go for a 2nd opinion and do you say that b/c you think it is

> probably sounding like it is " not " impaction? It has been suggested possibly

> her previous GERD could be a cause to the problems now as well?

>

>

>

> I did a yeast die off program a while back-almost a year ago to rid her of

> yeast w/probiotics and grapefruit seed extract-but that was over a year ago.

> I wonder if we are still dealing w/yeast issues. I wouldn't be surprised as

> she eats a lot of fruit.

>

>

>

> I have heard of but don't know much about the SCD or paleo diets so thank

> you, I will look into this. She does a lot of rice-probably too much and

> literally none of the grains although I am ready to start introducing some

> stuff slowly it seems I might have to wait to figure this out first. Because

> she showed so many intolerances, we removed the majority of stuff to work

> things back in slowly, one at a time.. Same with many of the bean

> flours.although she does eat a ton of legumes which I have heard can also

> cause constipation-seems so ironic!

>

>

>

> Have YOU tried the Dianne Craft Program-The biology of behavior? She has a

> supplement program in a specific order to help yeast die off and get things

> back into the diet right. You might look into this J She suggests many of

> these same supplements, but in a different order for different reasons

> thinking that until certain things are under control, other things won't be

> able to do their job as well? We are def. going to be getting my daughter

> more supplements after today.

>

> http://www.diannecraft.com/

>

> How do you check urine and saliva PH? I have not heard of this.

>

> Thank you so much! I really appreciate what everyone has suggested here.

> Lots of great advice and thought. When did eating and pooping become so

> complicated? Seriously!!! I have a lot of research and ordering to do today!

>

> Thanks Again!!!

>

>

>

> From: miralax [mailto:miralax ] On Behalf Of

> littlelief

> Sent: Sunday, December 28, 2008 8:25 PM

> To: miralax

> Subject: Re: New to Group

>

>

>

> <snip>

>

> Have you considered getting a second opinion regarding the impaction?

>

> Perhaps her gut is in a state of dysbiosis - an imbalance in the

> natural gut flora. Coconut milk (and coconut oil) has some natural

> antifungal activity and, while very good for people generally, can

> cause yeast " die off " issues for some people with candida overgrowth.

>

> Have you considered trying the SCD (specific carbohydrate

> diet) or paleo diet? Some people have a really hard time with grains

> in general and perhaps when she went GF (and all her other

> restrictions), she started getting more rice, corn, or other grain

> that is also bothersome to her.

>

>

>

> Even with our dietary restrictions (which were an amazing

> improvement!), my DS#1 (4 yrs) still needs 500mg magnesium and about

> 500mg vitamin C every day to keep him going *almost* daily. We also

> do a mineral supplement for children (with zinc, iodine, selenium, and

> a few other minerals in amounts appropriate for children). We keep

> working on reintroducing probiotics, but are having to go slowly on

> this one - he used to tolerate big doses just fine, but for some

> reason (suspecting yeast) he's having a hard time with them these days.

>

>

> You can try checking her urine and saliva pH - my DS#1's pH is always

> out of whack after a dietary infraction

>

[Guest guest]

Ok I def. have my work cut out for me. LOL Thanks for the info

on the pH strips. I will look into this for sure…

Check into the Dianne Craft stuff-We have used her recommendations….some

things we changed a little-there is no one size fits all. Her CD is worth

listening to-it has the supplement info in a specific order. A lot of people

dealing with sensory and/or gut related issues (Which can come out on a million

different forms from behavior to constipation and everywhere in between have

used her program) You don’t have to BUY her supplements-but she gives a

great informative step by step plan and why she does it in the order she does

it in…Her plan/supplement program is what got my daughter healed from the

yeast overgrowth…..and helped us in many other areas as well…we did

not even do the entire thing b/c we also found out she had multiple allergies

and went GFCFSFSF (among other things) and I couldn’t keep up with the

diet and trying to supplement that way too.

Anyway-best of luck!

I will look into the pH info J

[Guest guest]

No.

But we haven't vaccinated except 2 doses of DtAP for oldest, we found out about

food

intolerances early, they were breastfed, no interventions used to get pregnant,

few

interventions at birth (youngest was born at home),never used Miralax, oldest

only

had one round of antibiotics - youngest has never had them (except during birth

for both

boys - even the home birth), etc. etc. I feel lucky to have followed intuition

and instincts

on many of these things - esp vaccination (I had to really convince my DH that

after the

two doses of DtAP we couldn't do any more). Am glad I did. I don't know *If*

things

would've turned out differently for my children but I feel fortunate to not

wonder.

I have a suspicion that (mild) Aspergers runs in my family - but none of us has

been

diagnosed.

> >

> > ,

> >

> >

> >

> > Where would you go for a 2nd opinion and do you say that b/c you think it is

> > probably sounding like it is " not " impaction? It has been suggested possibly

> > her previous GERD could be a cause to the problems now as well?

> >

> >

> >

> > I did a yeast die off program a while back-almost a year ago to rid her of

> > yeast w/probiotics and grapefruit seed extract-but that was over a year ago.

> > I wonder if we are still dealing w/yeast issues. I wouldn't be surprised as

> > she eats a lot of fruit.

> >

> >

> >

> > I have heard of but don't know much about the SCD or paleo diets so thank

> > you, I will look into this. She does a lot of rice-probably too much and

> > literally none of the grains although I am ready to start introducing some

> > stuff slowly it seems I might have to wait to figure this out first. Because

> > she showed so many intolerances, we removed the majority of stuff to work

> > things back in slowly, one at a time.. Same with many of the bean

> > flours.although she does eat a ton of legumes which I have heard can also

> > cause constipation- seems so ironic!

> >

> >

> >

> > Have YOU tried the Dianne Craft Program-The biology of behavior? She has a

> > supplement program in a specific order to help yeast die off and get things

> > back into the diet right. You might look into this J She suggests many of

> > these same supplements, but in a different order for different reasons

> > thinking that until certain things are under control, other things won't be

> > able to do their job as well? We are def. going to be getting my daughter

> > more supplements after today.

> >

> > http://www.diannecr aft.com/

> >

> > How do you check urine and saliva PH? I have not heard of this.

> >

> > Thank you so much! I really appreciate what everyone has suggested here.

> > Lots of great advice and thought. When did eating and pooping become so

> > complicated? Seriously!!! I have a lot of research and ordering to do today!

> >

> > Thanks Again!!!

> >

> >

> >

> > From: miralax@yahoogroups .com [mailto:miralax@yahoogroups .com] On Behalf

Of

> > littlelief

> > Sent: Sunday, December 28, 2008 8:25 PM

> > To: miralax@yahoogroups .com

> > Subject: Re: New to Group

> >

> >

> >

> > <snip>

> >

> > Have you considered getting a second opinion regarding the impaction?

> >

> > Perhaps her gut is in a state of dysbiosis - an imbalance in the

> > natural gut flora. Coconut milk (and coconut oil) has some natural

> > antifungal activity and, while very good for people generally, can

> > cause yeast " die off " issues for some people with candida overgrowth.

> >

> > Have you considered trying the SCD (specific carbohydrate

> > diet) or paleo diet? Some people have a really hard time with grains

> > in general and perhaps when she went GF (and all her other

> > restrictions) , she started getting more rice, corn, or other grain

> > that is also bothersome to her.

> >

> >

> >

> > Even with our dietary restrictions (which were an amazing

> > improvement! ), my DS#1 (4 yrs) still needs 500mg magnesium and about

> > 500mg vitamin C every day to keep him going *almost* daily. We also

> > do a mineral supplement for children (with zinc, iodine, selenium, and

> > a few other minerals in amounts appropriate for children). We keep

> > working on reintroducing probiotics, but are having to go slowly on

> > this one - he used to tolerate big doses just fine, but for some

> > reason (suspecting yeast) he's having a hard time with them these days.

> >

> >

> > You can try checking her urine and saliva pH - my DS#1's pH is always

> > out of whack after a dietary infraction

> >

>

[Guest guest]

yeah, Dtap seems to be the culprit in MANY constipation problems.................I wonder if there's an antidote for it to fix what it did?

Subject: Re: New to GroupTo: miralax Date: Thursday, January 1, 2009, 8:06 PM

No.But we haven't vaccinated except 2 doses of DtAP for oldest, we found out about food intolerances early, they were breastfed, no interventions used to get pregnant, few interventions at birth (youngest was born at home),never used Miralax, oldest only had one round of antibiotics - youngest has never had them (except during birth for both boys - even the home birth), etc. etc. I feel lucky to have followed intuition and instincts on many of these things - esp vaccination (I had to really convince my DH that after the two doses of DtAP we couldn't do any more). Am glad I did. I don't know *If* things would've turned out differently for my children but I feel fortunate to not wonder.I have a suspicion that (mild) Aspergers runs in my family - but none of us has been diagnosed. > >> > ,> > > > > > > > Where would you go for a 2nd opinion and do you say that b/c you think it is> > probably sounding like it is "not" impaction? It has been suggested possibly> > her previous GERD could be a cause to the problems now as well? > > > > > > > > I did a yeast die off program a while back-almost a year ago to rid her of> > yeast w/probiotics and grapefruit seed extract-but that was over a year ago.> > I wonder if we are still dealing w/yeast issues. I wouldn't be surprised as> > she eats a lot of fruit.> > > > >

> > > I have heard of but don't know much about the SCD or paleo diets so thank> > you, I will look into this. She does a lot of rice-probably too much and> > literally none of the grains although I am ready to start introducing some> > stuff slowly it seems I might have to wait to figure this out first. Because> > she showed so many intolerances, we removed the majority of stuff to work> > things back in slowly, one at a time.. Same with many of the bean> > flours.although she does eat a ton of legumes which I have heard can also> > cause constipation- seems so ironic!> > > > > > > > Have YOU tried the Dianne Craft Program-The biology of behavior? She has a> > supplement program in a specific order to help yeast die off and get things> > back into the diet right. You might look into this J She suggests many

of> > these same supplements, but in a different order for different reasons> > thinking that until certain things are under control, other things won't be> > able to do their job as well? We are def. going to be getting my daughter> > more supplements after today. > > > > http://www.diannecr aft.com/> > > > How do you check urine and saliva PH? I have not heard of this. > > > > Thank you so much! I really appreciate what everyone has suggested here.> > Lots of great advice and thought. When did eating and pooping become so> > complicated? Seriously!!! I have a lot of research and ordering to do today!> > > > Thanks Again!!!> > > > > > > > From: miralax@yahoogroups .com [mailto:miralax@ yahoogroups .com] On

Behalf Of> > littlelief> > Sent: Sunday, December 28, 2008 8:25 PM> > To: miralax@yahoogroups .com> > Subject: Re: New to Group> > > > > > > > <snip>> > > > Have you considered getting a second opinion regarding the impaction? > > > > Perhaps her gut is in a state of dysbiosis - an imbalance in the> > natural gut flora. Coconut milk (and coconut oil) has some natural> > antifungal activity and, while very good for people generally, can> > cause yeast "die off" issues for some people with candida overgrowth.> > > > Have you considered trying the SCD (specific carbohydrate> > diet) or paleo diet? Some people have a really hard time with grains> > in general and perhaps when she went GF (and all her other> > restrictions) , she started getting

more rice, corn, or other grain> > that is also bothersome to her. > > > > > > > > Even with our dietary restrictions (which were an amazing> > improvement! ), my DS#1 (4 yrs) still needs 500mg magnesium and about> > 500mg vitamin C every day to keep him going *almost* daily. We also> > do a mineral supplement for children (with zinc, iodine, selenium, and> > a few other minerals in amounts appropriate for children). We keep> > working on reintroducing probiotics, but are having to go slowly on> > this one - he used to tolerate big doses just fine, but for some> > reason (suspecting yeast) he's having a hard time with them these days.> > > > > > You can try checking her urine and saliva pH - my DS#1's pH is always> > out of whack after a dietary infraction>

>>