I'm new

[Guest guest]

Wow Amy! That's great!!! You go girl!! Thanks for the welcome! : )

Love ya

Jecka : )

<Welcome!!! I am still somewhat new and this group is great!!

Amy M. <-who has lost one size, almost 10 inches and gained some awesome leg

muscles :-)>

What lies behind us and what lies before us are tiny matters compared

to what lies within us. "

-- Ralph Waldo Emerson

[Guest guest]

Thank you, I noticed something since I've been reading up on bpd. His style

is very solft spoken but when he didn't get his way he became agitated and

started yelling at me. He also accused me of saying things that I'm sure I

never said. My friends tell me their sons behave the same way. Even though

ist's disconcerting it's a teen boy way of challanging authority and trying

to weasle out of punishment. For me how ever that behavior triggered

memories of mom's behavior and caused me to have close to an anxiety attack.

He doesn't know how she behaved. my kids don't know her. I don't want her

near us. Now he's giving me the silent treatment. as far as his friends.

He's with the same bunch of boys he's been with since 1st grade with some

additions and some subtractions. we are in a small southern town with 1 high

school in the suburbs of Birmingham. all the kids know each other and hang

together at some time or another. we get the good and the bad.

Back to me as a KO, My husband and I have tried very hard to be

authoritative easygoing parents, with good boundaries and reasonable ness.

I think we've done ok so far but.. I don't have much relationship with my

son. He's bent out of shape that we have concern over his grades and college

future. He wants to be independent but he still a kid. I don't want to be

unreasonable with my expectations. I understand girl stuff but boy stuff is

a mystery. He's a good kid my husband on the other hand was a terrible kid.

I don't know. I'll take all the advice I can get.

[Guest guest]

Thank you, I noticed something since I've been reading up on bpd. His style

is very solft spoken but when he didn't get his way he became agitated and

started yelling at me. He also accused me of saying things that I'm sure I

never said. My friends tell me their sons behave the same way. Even though

ist's disconcerting it's a teen boy way of challanging authority and trying

to weasle out of punishment. For me how ever that behavior triggered

memories of mom's behavior and caused me to have close to an anxiety attack.

He doesn't know how she behaved. my kids don't know her. I don't want her

near us. Now he's giving me the silent treatment. as far as his friends.

He's with the same bunch of boys he's been with since 1st grade with some

additions and some subtractions. we are in a small southern town with 1 high

school in the suburbs of Birmingham. all the kids know each other and hang

together at some time or another. we get the good and the bad.

Back to me as a KO, My husband and I have tried very hard to be

authoritative easygoing parents, with good boundaries and reasonable ness.

I think we've done ok so far but.. I don't have much relationship with my

son. He's bent out of shape that we have concern over his grades and college

future. He wants to be independent but he still a kid. I don't want to be

unreasonable with my expectations. I understand girl stuff but boy stuff is

a mystery. He's a good kid my husband on the other hand was a terrible kid.

I don't know. I'll take all the advice I can get.

[Guest guest]

Dear , thank you for writing. I feel the same way about making an

extreme effort to not be like my nada. so I also probably did not enforce as

strictly as I should. My girls Have always mostly been very reasonable and

they kept their rooms clean etc becuase they want to. they have helped me

with house hold chores etc because we are family not because of any kind of

rules. my son is okay with mess and until recently he was a lot more

helpful. Do you think this moodiness is hormonal because of their age? I

think I need to work on not having my feelings hurt. my husband too.

[Guest guest]

KareySue,

First of all welcome to the group. I'm new myself and have been spending a lot

of time reading various posts to get as much information as I can possibly get.

It has been a tremendous help...

What trials you are going through! My heart goes out to you. Most of all try not

to feel guilty. You have and are doing all you can and more. Wanting to see your

Mom go peacefully in her sleep is a very normal and human emotion to be feeling

at this time. I feel the very same way about my Dad. No one wants to see the

people they love the most in the world suffer.

I am so sorry for all your losses this past year and I wish you so much courage

and strength. They say that we are not given more than we can handle. Sometimes

I wonder, and sometimes I feel the truth of that.

It is wonderful that you share a great relationship with your Dad. I'm sure it's

of great value to him at this time.

Take good care of yourself.

Anne

kareysue65 wrote:

Hey everybody, I've been reading everybodys posts for awhile now. My

mom has LBD, she's in a nh so I'm not actually a caregiver. I said

something to dad about this group and told him I hadn't actually

written anything to anyone, he told me to do it. Sooo, here I am.

This may be reallly long, but here's moms brief history. (as brief as

possible). She was diagnosed with diabetes about 8 years ago and took

meds to control it. July of 2000 she had double by-pass heart

surgery. At that time, they found out she has liver cirrosis. We

almost lost her due to complications with that. We feel the liver

disease is due to the diabetes meds she was on but never had liver

tests every couple of months like she was supposed to, but we didn't

know that at the time. After the heart surgery, she's taking 4

insulin shots a day.

She started having memory problems shortly after the heart surgery,

had all sorts of tests run. The doctors found that she had a large

growth in her ovary. (she had a partial hysterectomy years ago) They

thought maybe that had something to do with her memory problems.

(WHAT?!?!????) So they removed both ovaries and the growth was

benign, thank God!

While she was in the hospital for this, they found she has lung

disease. This is a woman who never drank alcohol or smoked in her

entire life!!

Dad took her to a neurologist about her memory and he couldn't figure

it out so he told him to bring her back in 6 months. This was about 2

years ago!

Last Sept. she had pneumonia, made it through that even though her

lungs are weak. That started her on oxygen 24/7. Then, Jan. 2003 she

really lost it. Many times dad would call for me to come over to the

house and help him convince her that he wasn't lying to her about

things. Just things like it's time to eat or time for your insulin

shot, things like that. She would listen to me for some reason.

Then one morning dad called me and said he had to call the ambulance

to take her to the hospital, she was having seizures. I got to the

hospital and she looked like hell. I just knew she was going to

die. Well, I guess she's a tough old bird, she survived, barely.

They said she had a UTI and put her on Cipro. This was about the 5th

UTI in a year and each time it made her start acting wierd, but she

seemed to never have any symptoms. Anyway, they took a lot of blood

for more tests and finally figured out that she had a staff

infection, in her blood. By the time they got that figured out, she

was totally unresponsive to anything!! I think a few more hours and

she would have been gone. (Which, looking back on things, would have

been a blessing)

After a 2 week stay in the hospital, dad realized, with the help of

the doctor and me, that he couldn't take her home and care for her

himself. She had fallen numerous times, been very confused, couldn't

finish sentences, couldn't feed herself, couldn't take her own meds.

So she went into the nh the end of January of this year, 2003. At

that point, we still didn't know what exactly was going on. The

doctor said dimentia, that's it. She seemed to know what was going on

and where she was and knew everybody who came to see her.

Since going into the nh she has had 3 UTI, in the last 2 months she

has lost 12 pounds. Up until a month ago she was eating very well, of

course she has to be fed. They just recently stopped physical therapy

because they realized that they can't help her. She can't stand, she

doesn't move her arms at all anymore and now she won't even look at

me unless I get right up in her face and even then her eyes are

blank. The last time I got a hug from her was in Feb. of this year.

It all hurts so much. OK, here come the tears!

Now about the LBD diagnosis. She had an appointment with a different

neurologist back in May, I think, of this year. He asked a lot of

questions of me and dad, then examined mom by asking her questions

and having her touch her nose and things like that. After about half

an hour he told us she has LBD. He put her on Aricept for her memory,

upped her dose of Cinemit (sp?) and wanted to see her in 3 months.

The Aricept seemed to help at first, now I think it's a waste of time

to give it to her. She was supposed to go back to the neurologist

tomorrow. We cancelled the appointment because we think it would be

too much for her. She breathes so heavy and her blood oxygen level

drops into the lower 80's. They want it above 90. Keep in mind, she

is on oxygen 24/7.

Dad and I are going to get a list of all the meds she takes and see

which ones we think could possibly be eliminated. I also forgot to

mention, she takes Synthroid for thyroid problems.

This poor woman!!! And to top off everything. I was pregnant in

Jan., had a miscarriage in Feb., got a tubal sterilization in March,

I'm my dad's right hand girl and his brain through all this and

getting medical assistance for mom, splitting their assets to

qualify, and on and on. And, on Sept. 23 my 50 year old brother died

of a " Ritter style " massive heart attack!!! This year has

really sucked!!! But I'm hanging in there. I put on a good front

for dad and try to be strong for him, but...how long can I do this?!

I'm already on Effexor XR 150 mg daily for panic and anxiety (which

runs in our family) and Zoloft 50 mg daily for depression (which also

runs in our family).I just I need to get feedback from people who

actually know what I'm going through.

I'm to the point now where I wish mom would just die peacefully in

her sleep. I feel guilty for saying that but it's true. I'm the

youngest of 5 children, 7 years behind the one just older than me.

My mom has been like my best friend. The one really good thing to

come of all this is the relationship between dad and me

is....AWESOME!!! Instead of him treating me like his baby girl who

doesn't know anything, he actually values and wants my opinion on

everything!

Mom is 71 years old now. She is just like a fragile baby, I feel so

sorry for her....or am I feeling sorry for me!?!???

Sorry this is so long, but I feel better just knowing that I've

shared my story with people who understand and can sympathize and

share their thoughts with me.

THANK YOU EVERYONE!!!!!

[Guest guest]

welcome to the group! Please know that you have been through an extremely

rough time. It is amazing that you are as together as you are. We don't

get to pick about this disease and we have little help (except the support

here) in dealing with it.

Do not feel guilty about wishing your LO will die peacefully in their sleep.

I bet if you took a poll on here that there would be few that have not

thought that since dealing with this " beast " . My mother said the other day

" I 'm better off dead than like this " . I said nothing because I couldn't

think of anything to say. I know how frustrating it is to me but it doesn't

even compare to what is happening to THEM.

We have to realize that anything that happened before we found this group

and it's combined knowledge WAS NOT OUR FAULT. Even if we knew something

was true for one person on this site, we still don't know if it will have

the same effect on our loved one. Someone on this board once said this is

the do it yourself disease. Find the information yourself-cause not many

doctors have heard about it, decide what medicine is the best for your

LO--because what works in the textbooks and on someone else, might have a

terrible effect to them, take each day and moment and enjoy the good ones,

treasure them for the next one might be horrible, and when they are

horrible, hold tight to the idea that this is a fluctuating disease and when

you feel that they could not possibly return to " better days " , they do, and

when they are on death's doorstep and the end seems inevitable, they live

on.

So hang in there (like you have a choice), share your ups and downs, try to

find humour in any way you can, because laughter is something that gets us

through it believe it or not, and be good to yourself. BE GOOD TO YOURSELF.

Otherwise you will be no good to anyone.

Kath in Toronto

I'm new

> Hey everybody, I've been reading everybodys posts for awhile now. My

> mom has LBD, she's in a nh so I'm not actually a caregiver. I said

> something to dad about this group and told him I hadn't actually

> written anything to anyone, he told me to do it. Sooo, here I am.

>

> This may be reallly long, but here's moms brief history. (as brief as

> possible). She was diagnosed with diabetes about 8 years ago and took

> meds to control it. July of 2000 she had double by-pass heart

> surgery. At that time, they found out she has liver cirrosis. We

> almost lost her due to complications with that. We feel the liver

> disease is due to the diabetes meds she was on but never had liver

> tests every couple of months like she was supposed to, but we didn't

> know that at the time. After the heart surgery, she's taking 4

> insulin shots a day.

>

> She started having memory problems shortly after the heart surgery,

> had all sorts of tests run. The doctors found that she had a large

> growth in her ovary. (she had a partial hysterectomy years ago) They

> thought maybe that had something to do with her memory problems.

> (WHAT?!?!????) So they removed both ovaries and the growth was

> benign, thank God!

>

> While she was in the hospital for this, they found she has lung

> disease. This is a woman who never drank alcohol or smoked in her

> entire life!!

>

> Dad took her to a neurologist about her memory and he couldn't figure

> it out so he told him to bring her back in 6 months. This was about 2

> years ago!

>

> Last Sept. she had pneumonia, made it through that even though her

> lungs are weak. That started her on oxygen 24/7. Then, Jan. 2003 she

> really lost it. Many times dad would call for me to come over to the

> house and help him convince her that he wasn't lying to her about

> things. Just things like it's time to eat or time for your insulin

> shot, things like that. She would listen to me for some reason.

>

> Then one morning dad called me and said he had to call the ambulance

> to take her to the hospital, she was having seizures. I got to the

> hospital and she looked like hell. I just knew she was going to

> die. Well, I guess she's a tough old bird, she survived, barely.

> They said she had a UTI and put her on Cipro. This was about the 5th

> UTI in a year and each time it made her start acting wierd, but she

> seemed to never have any symptoms. Anyway, they took a lot of blood

> for more tests and finally figured out that she had a staff

> infection, in her blood. By the time they got that figured out, she

> was totally unresponsive to anything!! I think a few more hours and

> she would have been gone. (Which, looking back on things, would have

> been a blessing)

>

> After a 2 week stay in the hospital, dad realized, with the help of

> the doctor and me, that he couldn't take her home and care for her

> himself. She had fallen numerous times, been very confused, couldn't

> finish sentences, couldn't feed herself, couldn't take her own meds.

> So she went into the nh the end of January of this year, 2003. At

> that point, we still didn't know what exactly was going on. The

> doctor said dimentia, that's it. She seemed to know what was going on

> and where she was and knew everybody who came to see her.

>

> Since going into the nh she has had 3 UTI, in the last 2 months she

> has lost 12 pounds. Up until a month ago she was eating very well, of

> course she has to be fed. They just recently stopped physical therapy

> because they realized that they can't help her. She can't stand, she

> doesn't move her arms at all anymore and now she won't even look at

> me unless I get right up in her face and even then her eyes are

> blank. The last time I got a hug from her was in Feb. of this year.

> It all hurts so much. OK, here come the tears!

>

> Now about the LBD diagnosis. She had an appointment with a different

> neurologist back in May, I think, of this year. He asked a lot of

> questions of me and dad, then examined mom by asking her questions

> and having her touch her nose and things like that. After about half

> an hour he told us she has LBD. He put her on Aricept for her memory,

> upped her dose of Cinemit (sp?) and wanted to see her in 3 months.

> The Aricept seemed to help at first, now I think it's a waste of time

> to give it to her. She was supposed to go back to the neurologist

> tomorrow. We cancelled the appointment because we think it would be

> too much for her. She breathes so heavy and her blood oxygen level

> drops into the lower 80's. They want it above 90. Keep in mind, she

> is on oxygen 24/7.

>

> Dad and I are going to get a list of all the meds she takes and see

> which ones we think could possibly be eliminated. I also forgot to

> mention, she takes Synthroid for thyroid problems.

>

> This poor woman!!! And to top off everything. I was pregnant in

> Jan., had a miscarriage in Feb., got a tubal sterilization in March,

> I'm my dad's right hand girl and his brain through all this and

> getting medical assistance for mom, splitting their assets to

> qualify, and on and on. And, on Sept. 23 my 50 year old brother died

> of a " Ritter style " massive heart attack!!! This year has

> really sucked!!! But I'm hanging in there. I put on a good front

> for dad and try to be strong for him, but...how long can I do this?!

> I'm already on Effexor XR 150 mg daily for panic and anxiety (which

> runs in our family) and Zoloft 50 mg daily for depression (which also

> runs in our family).I just I need to get feedback from people who

> actually know what I'm going through.

>

> I'm to the point now where I wish mom would just die peacefully in

> her sleep. I feel guilty for saying that but it's true. I'm the

> youngest of 5 children, 7 years behind the one just older than me.

> My mom has been like my best friend. The one really good thing to

> come of all this is the relationship between dad and me

> is....AWESOME!!! Instead of him treating me like his baby girl who

> doesn't know anything, he actually values and wants my opinion on

> everything!

>

> Mom is 71 years old now. She is just like a fragile baby, I feel so

> sorry for her....or am I feeling sorry for me!?!???

>

> Sorry this is so long, but I feel better just knowing that I've

> shared my story with people who understand and can sympathize and

> share their thoughts with me.

>

> THANK YOU EVERYONE!!!!!

>

>

>

>

>

[Guest guest]

Karey:

I lost track of how many times I teared up while I was reading your

post. Your story and the way you told it to us reminds us all of

just how much we've sacrificed to this illness. It's so bloody

unjust....

It truly sounds as if your mom has this incredible will to survive.

She's been through just about everything by the sounds of it. To

hear you describe her later in your post as a " fragile baby " almost

makes it appear as if you're talking about someone else. Yet, I

understand that she's become that way since LBD has begun having its

way with her in earnest.

I completely understand your desire to have your mother die

peacefully. Anyone who loves someone deeply would want that for

someone in so much pain and angst. Why would anyone want to prolong

something that we know won't get better? I don't think your " wish "

sounds horrible - in this instance anyway it sounds loving.

My own father is in the early stages of this disease (although on

days like today-a horrible day for him- I wonder if he's in that

early of a stage), yet I would want for him to die well before he'd

ever get to the stage most of our loved ones get to with this disease.

Thanks so much for sharing your story with us. You need support

given what you've been through and this is a phenomenal place for you

to get it. Everyone hear is the epitome of compassion and care and

you'll find them knowledgeable beyond the medical profession in most

cases.

Welcome. I'm sorry you came to this board for the reason that you

did but I know you're in the right place now that you've found it.

Abby

[Guest guest]

Karey,

I am blown away by all that your mother has survived, the losses that you

have had and then the loss of you brother. Words cannot adequately express

how much I am feeling for you and your father right now.

While your mother's physical problems are beyond me I would be interested in

hearing what meds/dose your mother is taking. I am constantly trying to

tweak my mother's meds to help her function from day to day and for the most

part have been pretty successful.

I don't think you are awful for thinking that your mother would be better

off passing in her sleep. After all that she has been through I believe

that she deserves a good death though many would argue that LBD prevents one

from having this. If anything, your mother has shown a tremendous amount of

courage and strength to not only have to face the awful news that the

doctor's were giving her but to go through the surgeries as well. Please

take some comfort in knowing that as your mother's daughter you have some of

her strength and courage too.

I, too, am on medication to help me through the day (depression and anxiety

run in our family too) and I am the second youngest of 5 children. Mom is

still living with Dad and my sister at home and I care for her during the

day.

Please feel free to share all that you need here. Please give your father

my best.

Courage

I'm new

>Hey everybody, I've been reading everybodys posts for awhile now. My

>mom has LBD, she's in a nh so I'm not actually a caregiver. I said

>something to dad about this group and told him I hadn't actually

>written anything to anyone, he told me to do it. Sooo, here I am.

>

>This may be reallly long, but here's moms brief history. (as brief as

>possible). She was diagnosed with diabetes about 8 years ago and took

>meds to control it. July of 2000 she had double by-pass heart

>surgery. At that time, they found out she has liver cirrosis. We

>almost lost her due to complications with that. We feel the liver

>disease is due to the diabetes meds she was on but never had liver

>tests every couple of months like she was supposed to, but we didn't

>know that at the time. After the heart surgery, she's taking 4

>insulin shots a day.

>

>She started having memory problems shortly after the heart surgery,

>had all sorts of tests run. The doctors found that she had a large

>growth in her ovary. (she had a partial hysterectomy years ago) They

>thought maybe that had something to do with her memory problems.

>(WHAT?!?!????) So they removed both ovaries and the growth was

>benign, thank God!

>

>While she was in the hospital for this, they found she has lung

>disease. This is a woman who never drank alcohol or smoked in her

>entire life!!

>

>Dad took her to a neurologist about her memory and he couldn't figure

>it out so he told him to bring her back in 6 months. This was about 2

>years ago!

>

>Last Sept. she had pneumonia, made it through that even though her

>lungs are weak. That started her on oxygen 24/7. Then, Jan. 2003 she

>really lost it. Many times dad would call for me to come over to the

>house and help him convince her that he wasn't lying to her about

>things. Just things like it's time to eat or time for your insulin

>shot, things like that. She would listen to me for some reason.

>

>Then one morning dad called me and said he had to call the ambulance

>to take her to the hospital, she was having seizures. I got to the

>hospital and she looked like hell. I just knew she was going to

>die. Well, I guess she's a tough old bird, she survived, barely.

>They said she had a UTI and put her on Cipro. This was about the 5th

>UTI in a year and each time it made her start acting wierd, but she

>seemed to never have any symptoms. Anyway, they took a lot of blood

>for more tests and finally figured out that she had a staff

>infection, in her blood. By the time they got that figured out, she

>was totally unresponsive to anything!! I think a few more hours and

>she would have been gone. (Which, looking back on things, would have

>been a blessing)

>

>After a 2 week stay in the hospital, dad realized, with the help of

>the doctor and me, that he couldn't take her home and care for her

>himself. She had fallen numerous times, been very confused, couldn't

>finish sentences, couldn't feed herself, couldn't take her own meds.

>So she went into the nh the end of January of this year, 2003. At

>that point, we still didn't know what exactly was going on. The

>doctor said dimentia, that's it. She seemed to know what was going on

>and where she was and knew everybody who came to see her.

>

>Since going into the nh she has had 3 UTI, in the last 2 months she

>has lost 12 pounds. Up until a month ago she was eating very well, of

>course she has to be fed. They just recently stopped physical therapy

>because they realized that they can't help her. She can't stand, she

>doesn't move her arms at all anymore and now she won't even look at

>me unless I get right up in her face and even then her eyes are

>blank. The last time I got a hug from her was in Feb. of this year.

>It all hurts so much. OK, here come the tears!

>

>Now about the LBD diagnosis. She had an appointment with a different

>neurologist back in May, I think, of this year. He asked a lot of

>questions of me and dad, then examined mom by asking her questions

>and having her touch her nose and things like that. After about half

>an hour he told us she has LBD. He put her on Aricept for her memory,

>upped her dose of Cinemit (sp?) and wanted to see her in 3 months.

>The Aricept seemed to help at first, now I think it's a waste of time

>to give it to her. She was supposed to go back to the neurologist

>tomorrow. We cancelled the appointment because we think it would be

>too much for her. She breathes so heavy and her blood oxygen level

>drops into the lower 80's. They want it above 90. Keep in mind, she

>is on oxygen 24/7.

>

>Dad and I are going to get a list of all the meds she takes and see

>which ones we think could possibly be eliminated. I also forgot to

>mention, she takes Synthroid for thyroid problems.

>

>This poor woman!!! And to top off everything. I was pregnant in

>Jan., had a miscarriage in Feb., got a tubal sterilization in March,

>I'm my dad's right hand girl and his brain through all this and

>getting medical assistance for mom, splitting their assets to

>qualify, and on and on. And, on Sept. 23 my 50 year old brother died

>of a " Ritter style " massive heart attack!!! This year has

>really sucked!!! But I'm hanging in there. I put on a good front

>for dad and try to be strong for him, but...how long can I do this?!

>I'm already on Effexor XR 150 mg daily for panic and anxiety (which

>runs in our family) and Zoloft 50 mg daily for depression (which also

>runs in our family).I just I need to get feedback from people who

>actually know what I'm going through.

>

>I'm to the point now where I wish mom would just die peacefully in

>her sleep. I feel guilty for saying that but it's true. I'm the

>youngest of 5 children, 7 years behind the one just older than me.

>My mom has been like my best friend. The one really good thing to

>come of all this is the relationship between dad and me

>is....AWESOME!!! Instead of him treating me like his baby girl who

>doesn't know anything, he actually values and wants my opinion on

>everything!

>

>Mom is 71 years old now. She is just like a fragile baby, I feel so

>sorry for her....or am I feeling sorry for me!?!???

>

>Sorry this is so long, but I feel better just knowing that I've

>shared my story with people who understand and can sympathize and

>share their thoughts with me.

>

>THANK YOU EVERYONE!!!!!

>

>

>

>

>

[Guest guest]

Dear kareysue,

My heart aches for you and all that you and your Dad are enduring.

We all have difficult roads here but what you wrote about you and

your family and what your mom has gone thru -- so much and she is

still so young; it is too much!

My heart has been so heavy with my mom's diagnosis. My mom was

healthy considering what others her age were going thru; she never

took any medications until in 2000, she was 75 then, when her doctor

said she had Parkinsons! She was finally diagnosed with LBD in July.

She too is in a nursing home now and on a feeding tube. We have

your same feelings about our Mom passing peacefully already. Though

I will miss her terribly, I miss her now; they are the living dead

like this; this is not a life anymore.

Please know that you are in my prayers and know that you have found

a wonderful site filled with so many informed and caring

individuals. I'm sure you will find some comfort in that; knowing

you are not alone and that others have gone thru this helps

tremendously.

You can respond to the post or sit back and just read them. Your

tears will flow no matter what but knowing that others know what you

going thru definitely helps.

Be strong...

Elaine

[Guest guest]

Anne,

Thank you for responding. I, too, have been spending a lot of time

reading previous posts. They are very helpful, just knowing I'm not

the only one.

> Hey everybody, I've been reading everybodys posts for awhile now.

My

> mom has LBD, she's in a nh so I'm not actually a caregiver. I said

> something to dad about this group and told him I hadn't actually

> written anything to anyone, he told me to do it. Sooo, here I am.

>

> This may be reallly long, but here's moms brief history. (as brief

as

> possible). She was diagnosed with diabetes about 8 years ago and

took

> meds to control it. July of 2000 she had double by-pass heart

> surgery. At that time, they found out she has liver cirrosis. We

> almost lost her due to complications with that. We feel the liver

> disease is due to the diabetes meds she was on but never had liver

> tests every couple of months like she was supposed to, but we

didn't

> know that at the time. After the heart surgery, she's taking 4

> insulin shots a day.

>

> She started having memory problems shortly after the heart surgery,

> had all sorts of tests run. The doctors found that she had a large

> growth in her ovary. (she had a partial hysterectomy years ago)

They

> thought maybe that had something to do with her memory problems.

> (WHAT?!?!????) So they removed both ovaries and the growth was

> benign, thank God!

>

> While she was in the hospital for this, they found she has lung

> disease. This is a woman who never drank alcohol or smoked in her

> entire life!!

>

> Dad took her to a neurologist about her memory and he couldn't

figure

> it out so he told him to bring her back in 6 months. This was about

2

> years ago!

>

> Last Sept. she had pneumonia, made it through that even though her

> lungs are weak. That started her on oxygen 24/7. Then, Jan. 2003

she

> really lost it. Many times dad would call for me to come over to

the

> house and help him convince her that he wasn't lying to her about

> things. Just things like it's time to eat or time for your insulin

> shot, things like that. She would listen to me for some reason.

>

> Then one morning dad called me and said he had to call the

ambulance

> to take her to the hospital, she was having seizures. I got to the

> hospital and she looked like hell. I just knew she was going to

> die. Well, I guess she's a tough old bird, she survived, barely.

> They said she had a UTI and put her on Cipro. This was about the

5th

> UTI in a year and each time it made her start acting wierd, but she

> seemed to never have any symptoms. Anyway, they took a lot of

blood

> for more tests and finally figured out that she had a staff

> infection, in her blood. By the time they got that figured out,

she

> was totally unresponsive to anything!! I think a few more hours and

> she would have been gone. (Which, looking back on things, would

have

> been a blessing)

>

> After a 2 week stay in the hospital, dad realized, with the help of

> the doctor and me, that he couldn't take her home and care for her

> himself. She had fallen numerous times, been very confused,

couldn't

> finish sentences, couldn't feed herself, couldn't take her own

meds.

> So she went into the nh the end of January of this year, 2003. At

> that point, we still didn't know what exactly was going on. The

> doctor said dimentia, that's it. She seemed to know what was going

on

> and where she was and knew everybody who came to see her.

>

> Since going into the nh she has had 3 UTI, in the last 2 months she

> has lost 12 pounds. Up until a month ago she was eating very well,

of

> course she has to be fed. They just recently stopped physical

therapy

> because they realized that they can't help her. She can't stand,

she

> doesn't move her arms at all anymore and now she won't even look at

> me unless I get right up in her face and even then her eyes are

> blank. The last time I got a hug from her was in Feb. of this

year.

> It all hurts so much. OK, here come the tears!

>

> Now about the LBD diagnosis. She had an appointment with a

different

> neurologist back in May, I think, of this year. He asked a lot of

> questions of me and dad, then examined mom by asking her questions

> and having her touch her nose and things like that. After about

half

> an hour he told us she has LBD. He put her on Aricept for her

memory,

> upped her dose of Cinemit (sp?) and wanted to see her in 3 months.

> The Aricept seemed to help at first, now I think it's a waste of

time

> to give it to her. She was supposed to go back to the neurologist

> tomorrow. We cancelled the appointment because we think it would

be

> too much for her. She breathes so heavy and her blood oxygen level

> drops into the lower 80's. They want it above 90. Keep in mind,

she

> is on oxygen 24/7.

>

> Dad and I are going to get a list of all the meds she takes and see

> which ones we think could possibly be eliminated. I also forgot to

> mention, she takes Synthroid for thyroid problems.

>

> This poor woman!!! And to top off everything. I was pregnant in

> Jan., had a miscarriage in Feb., got a tubal sterilization in

March,

> I'm my dad's right hand girl and his brain through all this and

> getting medical assistance for mom, splitting their assets to

> qualify, and on and on. And, on Sept. 23 my 50 year old brother

died

> of a " Ritter style " massive heart attack!!! This year has

> really sucked!!! But I'm hanging in there. I put on a good front

> for dad and try to be strong for him, but...how long can I do

this?!

> I'm already on Effexor XR 150 mg daily for panic and anxiety (which

> runs in our family) and Zoloft 50 mg daily for depression (which

also

> runs in our family).I just I need to get feedback from people who

> actually know what I'm going through.

>

> I'm to the point now where I wish mom would just die peacefully in

> her sleep. I feel guilty for saying that but it's true. I'm the

> youngest of 5 children, 7 years behind the one just older than me.

> My mom has been like my best friend. The one really good thing to

> come of all this is the relationship between dad and me

> is....AWESOME!!! Instead of him treating me like his baby girl who

> doesn't know anything, he actually values and wants my opinion on

> everything!

>

> Mom is 71 years old now. She is just like a fragile baby, I feel so

> sorry for her....or am I feeling sorry for me!?!???

>

> Sorry this is so long, but I feel better just knowing that I've

> shared my story with people who understand and can sympathize and

> share their thoughts with me.

>

> THANK YOU EVERYONE!!!!!

>

>

>

>

[Guest guest]

Kathy,

Thank you for responding. I'm glad I sound " together " because

sometimes I sure don't feel like it. I've already gotten a lot from

this group just from reading past posts and knowing I'm not alone.

> welcome to the group! Please know that you have been through an

extremely

> rough time. It is amazing that you are as together as you are. We

don't

> get to pick about this disease and we have little help (except the

support

> here) in dealing with it.

>

> Do not feel guilty about wishing your LO will die peacefully in

their sleep.

> I bet if you took a poll on here that there would be few that have

not

> thought that since dealing with this " beast " . My mother said the

other day

> " I 'm better off dead than like this " . I said nothing because I

couldn't

> think of anything to say. I know how frustrating it is to me but

it doesn't

> even compare to what is happening to THEM.

>

> We have to realize that anything that happened before we found this

group

> and it's combined knowledge WAS NOT OUR FAULT. Even if we knew

something

> was true for one person on this site, we still don't know if it

will have

> the same effect on our loved one. Someone on this board once said

this is

> the do it yourself disease. Find the information yourself-cause

not many

> doctors have heard about it, decide what medicine is the best for

your

> LO--because what works in the textbooks and on someone else, might

have a

> terrible effect to them, take each day and moment and enjoy the

good ones,

> treasure them for the next one might be horrible, and when they are

> horrible, hold tight to the idea that this is a fluctuating disease

and when

> you feel that they could not possibly return to " better days " , they

do, and

> when they are on death's doorstep and the end seems inevitable,

they live

> on.

>

> So hang in there (like you have a choice), share your ups and

downs, try to

> find humour in any way you can, because laughter is something that

gets us

> through it believe it or not, and be good to yourself. BE GOOD TO

YOURSELF.

> Otherwise you will be no good to anyone.

>

> Kath in Toronto

> I'm new

>

>

> > Hey everybody, I've been reading everybodys posts for awhile now.

My

> > mom has LBD, she's in a nh so I'm not actually a caregiver. I said

> > something to dad about this group and told him I hadn't actually

> > written anything to anyone, he told me to do it. Sooo, here I am.

> >

> > This may be reallly long, but here's moms brief history. (as

brief as

> > possible). She was diagnosed with diabetes about 8 years ago and

took

> > meds to control it. July of 2000 she had double by-pass heart

> > surgery. At that time, they found out she has liver cirrosis. We

> > almost lost her due to complications with that. We feel the liver

> > disease is due to the diabetes meds she was on but never had liver

> > tests every couple of months like she was supposed to, but we

didn't

> > know that at the time. After the heart surgery, she's taking 4

> > insulin shots a day.

> >

> > She started having memory problems shortly after the heart

surgery,

> > had all sorts of tests run. The doctors found that she had a

large

> > growth in her ovary. (she had a partial hysterectomy years ago)

They

> > thought maybe that had something to do with her memory problems.

> > (WHAT?!?!????) So they removed both ovaries and the growth was

> > benign, thank God!

> >

> > While she was in the hospital for this, they found she has lung

> > disease. This is a woman who never drank alcohol or smoked in her

> > entire life!!

> >

> > Dad took her to a neurologist about her memory and he couldn't

figure

> > it out so he told him to bring her back in 6 months. This was

about 2

> > years ago!

> >

> > Last Sept. she had pneumonia, made it through that even though her

> > lungs are weak. That started her on oxygen 24/7. Then, Jan. 2003

she

> > really lost it. Many times dad would call for me to come over to

the

> > house and help him convince her that he wasn't lying to her about

> > things. Just things like it's time to eat or time for your insulin

> > shot, things like that. She would listen to me for some reason.

> >

> > Then one morning dad called me and said he had to call the

ambulance

> > to take her to the hospital, she was having seizures. I got to the

> > hospital and she looked like hell. I just knew she was going to

> > die. Well, I guess she's a tough old bird, she survived, barely.

> > They said she had a UTI and put her on Cipro. This was about the

5th

> > UTI in a year and each time it made her start acting wierd, but

she

> > seemed to never have any symptoms. Anyway, they took a lot of

blood

> > for more tests and finally figured out that she had a staff

> > infection, in her blood. By the time they got that figured out,

she

> > was totally unresponsive to anything!! I think a few more hours

and

> > she would have been gone. (Which, looking back on things, would

have

> > been a blessing)

> >

> > After a 2 week stay in the hospital, dad realized, with the help

of

> > the doctor and me, that he couldn't take her home and care for her

> > himself. She had fallen numerous times, been very confused,

couldn't

> > finish sentences, couldn't feed herself, couldn't take her own

meds.

> > So she went into the nh the end of January of this year, 2003. At

> > that point, we still didn't know what exactly was going on. The

> > doctor said dimentia, that's it. She seemed to know what was

going on

> > and where she was and knew everybody who came to see her.

> >

> > Since going into the nh she has had 3 UTI, in the last 2 months

she

> > has lost 12 pounds. Up until a month ago she was eating very

well, of

> > course she has to be fed. They just recently stopped physical

therapy

> > because they realized that they can't help her. She can't stand,

she

> > doesn't move her arms at all anymore and now she won't even look

at

> > me unless I get right up in her face and even then her eyes are

> > blank. The last time I got a hug from her was in Feb. of this

year.

> > It all hurts so much. OK, here come the tears!

> >

> > Now about the LBD diagnosis. She had an appointment with a

different

> > neurologist back in May, I think, of this year. He asked a lot of

> > questions of me and dad, then examined mom by asking her questions

> > and having her touch her nose and things like that. After about

half

> > an hour he told us she has LBD. He put her on Aricept for her

memory,

> > upped her dose of Cinemit (sp?) and wanted to see her in 3 months.

> > The Aricept seemed to help at first, now I think it's a waste of

time

> > to give it to her. She was supposed to go back to the neurologist

> > tomorrow. We cancelled the appointment because we think it would

be

> > too much for her. She breathes so heavy and her blood oxygen level

> > drops into the lower 80's. They want it above 90. Keep in mind,

she

> > is on oxygen 24/7.

> >

> > Dad and I are going to get a list of all the meds she takes and

see

> > which ones we think could possibly be eliminated. I also forgot to

> > mention, she takes Synthroid for thyroid problems.

> >

> > This poor woman!!! And to top off everything. I was pregnant in

> > Jan., had a miscarriage in Feb., got a tubal sterilization in

March,

> > I'm my dad's right hand girl and his brain through all this and

> > getting medical assistance for mom, splitting their assets to

> > qualify, and on and on. And, on Sept. 23 my 50 year old brother

died

> > of a " Ritter style " massive heart attack!!! This year has

> > really sucked!!! But I'm hanging in there. I put on a good front

> > for dad and try to be strong for him, but...how long can I do

this?!

> > I'm already on Effexor XR 150 mg daily for panic and anxiety

(which

> > runs in our family) and Zoloft 50 mg daily for depression (which

also

> > runs in our family).I just I need to get feedback from people who

> > actually know what I'm going through.

> >

> > I'm to the point now where I wish mom would just die peacefully in

> > her sleep. I feel guilty for saying that but it's true. I'm the

> > youngest of 5 children, 7 years behind the one just older than me.

> > My mom has been like my best friend. The one really good thing to

> > come of all this is the relationship between dad and me

> > is....AWESOME!!! Instead of him treating me like his baby girl who

> > doesn't know anything, he actually values and wants my opinion on

> > everything!

> >

> > Mom is 71 years old now. She is just like a fragile baby, I feel

so

> > sorry for her....or am I feeling sorry for me!?!???

> >

> > Sorry this is so long, but I feel better just knowing that I've

> > shared my story with people who understand and can sympathize and

> > share their thoughts with me.

> >

> > THANK YOU EVERYONE!!!!!

> >

> >

> >

> >

> >

[Guest guest]

Abby,

I have teared up numerous times just reading past posts. Why do

people have an incredible will to live when they are just a shell? I

don't understand, never will. Also, they say the average life span of

this beast is 5-7 years. How do you know when that time starts?

After looking back on things that have happened, mom probably had

this disease shortly after her heart by-pass in 2000.

I guess life is one big learning experience. I'm tired of learning.

> Karey:

>

> I lost track of how many times I teared up while I was reading your

> post. Your story and the way you told it to us reminds us all of

> just how much we've sacrificed to this illness. It's so bloody

> unjust....

>

> It truly sounds as if your mom has this incredible will to

survive.

> She's been through just about everything by the sounds of it. To

> hear you describe her later in your post as a " fragile baby " almost

> makes it appear as if you're talking about someone else. Yet, I

> understand that she's become that way since LBD has begun having

its

> way with her in earnest.

>

> I completely understand your desire to have your mother die

> peacefully. Anyone who loves someone deeply would want that for

> someone in so much pain and angst. Why would anyone want to

prolong

> something that we know won't get better? I don't think your " wish "

> sounds horrible - in this instance anyway it sounds loving.

>

> My own father is in the early stages of this disease (although on

> days like today-a horrible day for him- I wonder if he's in that

> early of a stage), yet I would want for him to die well before he'd

> ever get to the stage most of our loved ones get to with this

disease.

>

> Thanks so much for sharing your story with us. You need support

> given what you've been through and this is a phenomenal place for

you

> to get it. Everyone hear is the epitome of compassion and care and

> you'll find them knowledgeable beyond the medical profession in

most

> cases.

>

> Welcome. I'm sorry you came to this board for the reason that you

> did but I know you're in the right place now that you've found it.

>

> Abby

[Guest guest]

Elaine,

Thanks for responding. I know exactly what you mean when you say you

already miss her. I miss my mom sooo much even though she is still

with us. She was one of my best friends! This damn disease took that

from us!!

So far mom eats very well when fed. If it gets to the point where she

won't eat, there will be no feeding tube. Her and Dad both have

living wills stating that. That will be really difficult if it comes

to that.

I have no choice but to be strong. Dad needs me.

> Dear kareysue,

> My heart aches for you and all that you and your Dad are enduring.

> We all have difficult roads here but what you wrote about you and

> your family and what your mom has gone thru -- so much and she is

> still so young; it is too much!

> My heart has been so heavy with my mom's diagnosis. My mom was

> healthy considering what others her age were going thru; she never

> took any medications until in 2000, she was 75 then, when her

doctor

> said she had Parkinsons! She was finally diagnosed with LBD in

July.

> She too is in a nursing home now and on a feeding tube. We have

> your same feelings about our Mom passing peacefully already.

Though

> I will miss her terribly, I miss her now; they are the living dead

> like this; this is not a life anymore.

> Please know that you are in my prayers and know that you have found

> a wonderful site filled with so many informed and caring

> individuals. I'm sure you will find some comfort in that; knowing

> you are not alone and that others have gone thru this helps

> tremendously.

> You can respond to the post or sit back and just read them. Your

> tears will flow no matter what but knowing that others know what

you

> going thru definitely helps.

> Be strong...

> Elaine

[Guest guest]

Bless your mom and dad for making it so that you won't have to make that

choice. I, too, am going to ammend my living will so that my children will

not have to sit up nights agonizing over the choices this darned disease

demands we make.

Courage

Re: I'm new

>Elaine,

>

>Thanks for responding. I know exactly what you mean when you say you

>already miss her. I miss my mom sooo much even though she is still

>with us. She was one of my best friends! This damn disease took that

>from us!!

>

>So far mom eats very well when fed. If it gets to the point where she

>won't eat, there will be no feeding tube. Her and Dad both have

>living wills stating that. That will be really difficult if it comes

>to that.

>

>I have no choice but to be strong. Dad needs me.

>

>

>

>> Dear kareysue,

>> My heart aches for you and all that you and your Dad are enduring.

>> We all have difficult roads here but what you wrote about you and

>> your family and what your mom has gone thru -- so much and she is

>> still so young; it is too much!

>> My heart has been so heavy with my mom's diagnosis. My mom was

>> healthy considering what others her age were going thru; she never

>> took any medications until in 2000, she was 75 then, when her

>doctor

>> said she had Parkinsons! She was finally diagnosed with LBD in

>July.

>> She too is in a nursing home now and on a feeding tube. We have

>> your same feelings about our Mom passing peacefully already.

>Though

>> I will miss her terribly, I miss her now; they are the living dead

>> like this; this is not a life anymore.

>> Please know that you are in my prayers and know that you have found

>> a wonderful site filled with so many informed and caring

>> individuals. I'm sure you will find some comfort in that; knowing

>> you are not alone and that others have gone thru this helps

>> tremendously.

>> You can respond to the post or sit back and just read them. Your

>> tears will flow no matter what but knowing that others know what

>you

>> going thru definitely helps.

>> Be strong...

>> Elaine

>

>

>

>

[Guest guest]

Bless your mom and dad for making it so that you won't have to make that

choice. I, too, am going to ammend my living will so that my children will

not have to sit up nights agonizing over the choices this darned disease

demands we make.

Courage

Re: I'm new

>Elaine,

>

>Thanks for responding. I know exactly what you mean when you say you

>already miss her. I miss my mom sooo much even though she is still

>with us. She was one of my best friends! This damn disease took that

>from us!!

>

>So far mom eats very well when fed. If it gets to the point where she

>won't eat, there will be no feeding tube. Her and Dad both have

>living wills stating that. That will be really difficult if it comes

>to that.

>

>I have no choice but to be strong. Dad needs me.

>

>

>

>> Dear kareysue,

>> My heart aches for you and all that you and your Dad are enduring.

>> We all have difficult roads here but what you wrote about you and

>> your family and what your mom has gone thru -- so much and she is

>> still so young; it is too much!

>> My heart has been so heavy with my mom's diagnosis. My mom was

>> healthy considering what others her age were going thru; she never

>> took any medications until in 2000, she was 75 then, when her

>doctor

>> said she had Parkinsons! She was finally diagnosed with LBD in

>July.

>> She too is in a nursing home now and on a feeding tube. We have

>> your same feelings about our Mom passing peacefully already.

>Though

>> I will miss her terribly, I miss her now; they are the living dead

>> like this; this is not a life anymore.

>> Please know that you are in my prayers and know that you have found

>> a wonderful site filled with so many informed and caring

>> individuals. I'm sure you will find some comfort in that; knowing

>> you are not alone and that others have gone thru this helps

>> tremendously.

>> You can respond to the post or sit back and just read them. Your

>> tears will flow no matter what but knowing that others know what

>you

>> going thru definitely helps.

>> Be strong...

>> Elaine

>

>

>

>

[Guest guest]

Hi Rob,

My name is Danni. I just wanted to welcome you to the group. I know what it

is like to have alot of free time on swollen hands... If you have any

questions feel free to e-mail me at blondedolphin172@... anytime.

Again welcome to the group.

Danni

________________________________________________________________________

Check out AOL.com today. Breaking news, video search, pictures, email and IM.

All on demand. Always Free.

[Guest guest]

Hi Rob,

My name is Danni. I just wanted to welcome you to the group. I know what it

is like to have alot of free time on swollen hands... If you have any

questions feel free to e-mail me at blondedolphin172@... anytime.

Again welcome to the group.

Danni

________________________________________________________________________

Check out AOL.com today. Breaking news, video search, pictures, email and IM.

All on demand. Always Free.

[Guest guest]

Hi Rob You will meet alot of nice people here. I have a feeling you might

not get too many answers. I can't think of anyone in the mid west. How weird.

Stay tuned for good friends, support and lots of Info. I think tho there might

be a list of doctors on the website. I live near Philadelphia . I have had

this since 1972. Am well more than I have been sick...but when i am sick...no

good....Hugs Liz NJ( near Philadelphia in southern NJ )

[Guest guest]

Hi Rob You will meet alot of nice people here. I have a feeling you might

not get too many answers. I can't think of anyone in the mid west. How weird.

Stay tuned for good friends, support and lots of Info. I think tho there might

be a list of doctors on the website. I live near Philadelphia . I have had

this since 1972. Am well more than I have been sick...but when i am sick...no

good....Hugs Liz NJ( near Philadelphia in southern NJ )

[Guest guest]

Hi a,

Welcome to the group!

What meds did the Doctor put you on?

Are you taking any of the natural stuff?

Alana

>

> My name is a and i have had Asthma all my life. but just got

told

> last tuesday what meds i should be on for it, so i am new sort of i

> like to learn more about how and what to do thanks

>

[Guest guest]

Hi Alana

I am on Salbutamol 100MCS one puff four times a day as needed and Pulmicort Turbuhaler 100UG inhale two puffs twice a day

what natural meds can i take?

thanks for the welcome

Hugs

a

Hi a,Welcome to the group!What meds did the Doctor put you on?Are you taking any of the natural stuff?Alana>> My name is a and i have had Asthma all my life. but just got told > last tuesday what meds i should be on for it, so i am new sort of i > like to learn more about how and what to do thanks>

[Guest guest]

Have you had an IGg done on him to determine exactly what he is allergic to?

I'm New

I read all of the files and am very excited about doing this for myson. Some things do not apply to him since he never had anyimmunizations. I don't have to worry about measles or herpes.The problem is his horrendous allergies. His reaction to a food orsupplement are seizures. Wish it were rashes instead! I reallystruggle to get new supplements in him. When he has a reaction it isat least 4 days til he is seizure free again. What if this protocolis the answer? Maybe this is why he is regressing. No matter what Ido or try, he regresses. He has been sugar, dairy, gluten andprocessed food free for 4 years. He is scd since september. Everytime I try the probiotics or homemade dripped goat yogurt, I endup taking them back out because of seizures. I feel like it is goingto be impossible to get him to tolerate anything but I have to try.Could his seizures and allergies be from viruses? I was pregnant withhim while living in a home with mold and we lived there til he was 3.Does anyone have any ideas? Also, are bananas a bad idea for him?Thank you jo

[Guest guest]

Yes, he had the tests done and it came back he was allergic to almost

everything. Some foods cause an immediate seizure.

jo

In mb12 valtrex , " Handley " wrote:

>

> Have you had an IGg done on him to determine exactly what he is

allergic to?

>

> I'm New

>

>

> I read all of the files and am very excited about doing this for my

> son. Some things do not apply to him since he never had any

> immunizations. I don't have to worry about measles or herpes.

>

> The problem is his horrendous allergies. His reaction to a food or

> supplement are seizures. Wish it were rashes instead! I really

> struggle to get new supplements in him. When he has a reaction it is

> at least 4 days til he is seizure free again. What if this protocol

> is the answer? Maybe this is why he is regressing. No matter what I

> do or try, he regresses. He has been sugar, dairy, gluten and

> processed food free for 4 years. He is scd since september.

> Everytime I try the probiotics or homemade dripped goat yogurt, I end

> up taking them back out because of seizures. I feel like it is going

> to be impossible to get him to tolerate anything but I have to try.

>

> Could his seizures and allergies be from viruses? I was pregnant with

> him while living in a home with mold and we lived there til he was 3.

>

> Does anyone have any ideas? Also, are bananas a bad idea for him?

>

> Thank you

> jo

>

[Guest guest]

Is he autistic too? Have you seen a homeopathic doctor?

I'm New> > > I read all of the files and am very excited about doing this for my> son. Some things do not apply to him since he never had any> immunizations. I don't have to worry about measles or herpes.> > The problem is his horrendous allergies. His reaction to a food or> supplement are seizures. Wish it were rashes instead! I really> struggle to get new supplements in him. When he has a reaction it is> at least 4 days til he is seizure free again. What if this protocol> is the answer? Maybe this is why he is regressing. No matter what I> do or try, he regresses. He has been sugar, dairy, gluten and> processed food free for 4 years. He is scd since september. > Everytime I try the probiotics or homemade dripped goat yogurt, I end> up taking them back out because of seizures. I feel like it is going> to be impossible to get him to tolerate anything but I have to try.> > Could his seizures and allergies be from viruses? I was pregnant with> him while living in a home with mold and we lived there til he was 3.> > Does anyone have any ideas? Also, are bananas a bad idea for him?> > Thank you > jo>

[Guest guest]

jo,

My daughter deals with seizures also. So many of the probiotics have

enough milk residue that they will trigger a seizure. Her response to

goat milk/yogurt is also seizure. We've had success making yogurt

with coconut milk.

> >

> > Have you had an IGg done on him to determine exactly what he is

> allergic to?

> >

> > I'm New

> >

> >

> > I read all of the files and am very excited about doing this

for my

> > son. Some things do not apply to him since he never had any

> > immunizations. I don't have to worry about measles or herpes.

> >

> > The problem is his horrendous allergies. His reaction to a food

or

> > supplement are seizures. Wish it were rashes instead! I really

> > struggle to get new supplements in him. When he has a reaction

it is

> > at least 4 days til he is seizure free again. What if this

protocol

> > is the answer? Maybe this is why he is regressing. No matter

what I

> > do or try, he regresses. He has been sugar, dairy, gluten and

> > processed food free for 4 years. He is scd since september.

> > Everytime I try the probiotics or homemade dripped goat yogurt,

I end

> > up taking them back out because of seizures. I feel like it is

going

> > to be impossible to get him to tolerate anything but I have to

try.

> >

> > Could his seizures and allergies be from viruses? I was

pregnant with

> > him while living in a home with mold and we lived there til he

was 3.

> >

> > Does anyone have any ideas? Also, are bananas a bad idea for

him?

> >

> > Thank you

> > jo

> >

>