depression

October 14, 1999

Thanks Sheryl, I do treat myself to an ultra relaxing facial once a month. I

figure, all the $$ we spend on kids lessons, treatments, etc, I can splurge

$50/month on myself. I had my labs done by my endocrinologist sister in law,

and she said I am starting pre-menopause (age 48), so she is starting me on

estradiol and progesterone, she thinks I'll feel a lot better. The stress

will still be there, but it's my mood and how I handle it I guess, whereas

this time it made me physically sick. We'll see! Thanks for the ear, Barbra

October 14, 1999

Michele, too eats with his mouth open; it is quite disgusting! I don't

think we should worry that it'll get worse though, because they will keep

making progress in lots of ways, and maturing, and learning to deal with

others and vice versa. 's school and friends already are learning to

take care of him and be a friend. everything is slow and sometimes

depressing, but we have to hold onto progress. Good luck, and thanks for the

response. Barbra M

October 14, 1999

,

I feel for you. I haven't reached that stage yet, Brit is only 7 but to know

that was said

at her school, that brought tears to my eyes. Big hugs to you both.

Amy Brittney 7 CHARgE megan 4 robert 3

----------

>

> Barbara,

>

> I definitely know how you feel, Maddie is 12 too, and the 6th grade is so

> stressfully different. She has had so much homework which means " I " have so

> much homework. I have cried a few times this fall and it seems to be

> magnified if I am PMSy. The school is still trying to figure out what works

> for her and that part is frustrating for all us including Maddie. I don't

> mean to digress but to make matters worse she had lunch room teacher tell

> her to chew with her mouth closed. She told the teacher she couldn't and the

> teacher said just try. (Maddie had a cleft palate and lip and of course her

> bite is all screwed up, she has an expander on the roof of her mouth and a

> retainer on the bottom). Maddie asked me at dinner one night why she

> couldn't chew with her mouth closed, when I questioned her she told me what

> had happened at lunch a few days before. I started crying as soon as she

> was done eating and out of the room. The part that scares me is that I think

> it is only going to get harder as she gets older. Hang in there and take

> vitamins!

>

> -----------------------------------------------

> Ed & Bibo Vaughn

> Mom of Maddie(CHARgE) - 12 & Philip-10

> Granger, IN

> bibovaughn@...

> AOL Buddy - bibommm

> ICQ #11128396

>

> " Live Long and Prosper " Mr. Spock

> Depression

>

> > From: MoMouse495@...

> >

> > Hey guys, I've been depressed lately about 's icky behavior, and the

> > feeling like I can't take this for another 10 years or so! (he's 12).

> What

> > do you guys do to get out of a funk like this? I don't have any appetite

> and

> > just go back to bed in the morning for awhile. Could be hormonal, had

> labs

> > drawn today, as I'm 48. That could be why I'm just not handling the stress

> as

> > well right now. Thanks for the ear, Barbra

> >

> > > For information about the CHARGE Syndrome Foundation or to become a member

> please contact marion@....

> >

>

> > For information about the CHARGE Syndrome Foundation or to become a member

> please contact marion@....

>

October 14, 1999

Barbra,

My mom is on the hormones and she is doing really well with the menopause

thing. So, hopefully it'll help you out some!

Mom to Kennedy 20 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

From: MoMouse495@...

Thanks Sheryl, I do treat myself to an ultra relaxing facial once a month.

I

figure, all the $$ we spend on kids lessons, treatments, etc, I can splurge

$50/month on myself. I had my labs done by my endocrinologist sister in

law,

and she said I am starting pre-menopause (age 48), so she is starting me on

estradiol and progesterone, she thinks I'll feel a lot better. The stress

will still be there, but it's my mood and how I handle it I guess, whereas

this time it made me physically sick. We'll see! Thanks for the ear,

Barbra

---------------------------

October 20, 1999

Jeanne, and all..

Must be the mindset, because it goes both ways.. I never let them

see me cry.. one of the nurses told me that the docs were talking

about me.. saying I was too stoic (sp?).. wondering if I was in

denial, had grasped the reality of my son's disabilities or had a

detachment disorder..

We all have our own ways of coping.. as for those that think there

is something wrong because it's not the way they cope or think it's

the way we should cope.. well what I think of them can't be posted

on the list <G>

Casey

Mom to Dawn 20 HH, Ken 10 ADHD, 7 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220

October 20, 1999

Jeanne,

You give Caitlyn big hugs for me. She is one incredible little girl. I had

to fight back the tears after reading your post about operating on Barney.

Talk about a child who knows how to cope. The doctor's could take lessons

from her (and us too).

It's absurd to autimatically assume you (as her mother) have a problem

because you are *weepy*. Bet you they'd be referring you if you didn't cry.

Can't win either way!

Janet

Wife to Matt

Mom to & (CHaRGEr) 7, nne 2 1/2

Mom to 16 months.

Weymouth, Massachusetts, USA

<A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</

A>

October 20, 1999

In a message dated 10/19/99 7:50:03 PM Pacific Daylight Time,

jemcat@... writes:

<< I did go to a psychiatrist and a psychologist and they told me that the

doctors should just let her die. Thanks a lot, that really helped me to

cope! >>

Jeanne,

Why in the world would doctors say this to you???? Did they think your heart

would heal better if your daughter just 'went away'??? I do not understand

this type of thinking from professionals! What if Caitlyn was a perfectly

healthy child who was suddenly in an accident and had severe disabilities as

a result, but lived? You would love her just as much either way!! It is

tragic that these things happen but I would never give up my child. I think

people don't understand that this could be there life in an instant!!

Amazed...

Jacque C.

Austin's mom

October 20, 1999

Casey,

I love the way you cope! :0)!

Jackie Kenley

P. S. could you give me the website for Handle again..sorry to be a digbat!

October 20, 1999

I remember when Brit was little and the docs wanted me to turn her over to

the state. I know i was only 20 and a single mom, but I had a heart and I

love my child. It's amazing how heartless the docs can be.

just my 2cents

Amy mom to Brittney 7

Re: depression

> From: JClif222@...

>

> In a message dated 10/19/99 7:50:03 PM Pacific Daylight Time,

> jemcat@... writes:

>

> << I did go to a psychiatrist and a psychologist and they told me that the

> doctors should just let her die. Thanks a lot, that really helped me to

> cope! >>

>

> Jeanne,

>

> Why in the world would doctors say this to you???? Did they think your

heart

> would heal better if your daughter just 'went away'??? I do not

understand

> this type of thinking from professionals! What if Caitlyn was a perfectly

> healthy child who was suddenly in an accident and had severe disabilities

as

> a result, but lived? You would love her just as much either way!! It is

> tragic that these things happen but I would never give up my child. I

think

> people don't understand that this could be there life in an instant!!

>

> Amazed...

> Jacque C.

> Austin's mom

>

> > For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

October 21, 1999

Michele, and everyone,

Matt was like that too. I was very emotional. Crying all the times. My

family, my *nurse* sister in particular, thought Matt was a Pollyanna because

he would not listen to the doctor's poor prognosis for . They said all

of the same things everyone else is saying.

My sister, being a nurse, felt it her obligation to tell me, 1 day after the

boys were born, that I had to be prepared for to die. On one hand I

can understand her attempt to prepare me, especially when you consider that

our Mother had just died 3 weeks earlier, but she's not the most tactful

person in the world, and was quite blunt. A friend of mine was in the room,

and when my sister left (she was on duty in her scrubs), my friend said " who

the *$ & %@ was that!? " When I told her my sister, she was like okay, but

couldn't believe the tone and what she was saying.

Look at him now, 7 1/2, in 1st grade, and doing quite well, thank you very

much!

Janet

Wife to Matt

Mom to & (CHaRGEr) 7, nne 2 1/2

Mom to 16 months.

Weymouth, Massachusetts, USA

<A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</

A>

October 22, 1999

Jeanne,

I was told almost the same about Patty-she is 15 and a beauty! I can't

believe a Psych. told you that, then again I guess I can. Just trust your

heart and your child. Back when Patty was little I think it would have been

good if we got some kind of emotional support-professional- because even

family didn't understand, though they tried. But, if you get people like

this who are supposed to help then forget it. I guess the best support for

all are being on this list. Just keep writing. The people here care and

understand. They also don't judge!

Bonnie

October 24, 1999

I have to agree. Just think about what happened to . Because of

what the doctors told his biological parents he spent 51/2 years in an

institution. They were very wrong in their dx. might have been

spared all that if the doctors hadn't painted the very worst scenero

picture. That goodness God was watching out for him.

) Vicki mom to (24)

Graeme & Weir wrote:

> Everyone,Talking about all these doctors painting the worst case

> scenarios for CHARGErs, and telling moms & dads all these horrible

> things makes me really upset. The reason it makes me really upset

> is: just imagine all the moms & dads out there without the hope of

> this list and the others telling them that the doctors are full of

> s**t, cause look how well our CHARGErs are doing. I feel really bad

> for anyone going through any of this without access to this list.

> Just another thing to thank Casey & the list for...

> Mom to Kennedy 20 mos old CHARGEr, 10, 8, and wife to Graeme

>

> New Brunswick, Canada

March 1, 2002

Helena........I have been feeling the same way. I had my operation Feb 5th and

have been pretty restricted as to what I can have. I can finally have full

liquids, but I have to tell you that something feels off. Its because we are

changing our habits. Its hard to believe that so much of who we are was

centered around food, and sometimes we don't know what to do with that. I am

even mourning that I can't eat the same foods as I use to. I know this is

temporary, but it still hurts to a certain extent. This is not even mentioning

that our bodies are physically changing. I still hurt, and still have one tube

in. I will be getting that out in about two weeks, so I don't feel normal.

Just drink in small sips and when you have anything of substance, enjoy it

SLOWLY!!! ITs so important not to push too hard. Anyway, we are going through

the same thing, so write me if you want and we can figuer it out together

Carol

March 2, 2002

i am a year post op, but i do remember being depressed in the first few

months, i was told by my doctor that our bodies store estrogen in fat, and

when we quickly lose weight, we are more prone to depression when that

estrogen is released due to chemical imbalances...talk to your doctor about

this, you can get through this!

best of luck

cathi

July 18, 2008

Jan -

What an amazing conversation with Jim!

Have you read " Final Gifts " ? It's a great book to help people

prepare to die.

On the LBDA Forum, the two antidepressants that seem to be used the

most frequently are Lexapro and Paxil.

Robin

>

> Yesterday, I was visiting Jim at the nh. It's the first time I have

ever seen him actually depressed.

> Everything was as usual earlier in the evening. I took him to an

outdoor concert in a shopping plaza that we go to weekly. I pull up

in a hanicap parking space right next to the concert. The space has

been there every week for us. Amazing! I put the top down on the

convertible and we are right amongst the concert. He enjoys it. We

got back to the nh after the concert and he got ready for bed and

fell asleep very fast. It was around 8:30PM. I sit and read a book

next to his bed until around 10PM, because almost like clock work

around 9:30PM, he will wake up and have to go to the bathroom. He

will hold on for as long as possible and he gets very restless. I

know if I wasn't there to take him, he would hold on for a very long

time and then release in his diaper and be in a wet diaper all night.

I think this helps to contribute to his frequent UTIs, so I stay to

bring him to the toilet one last time before he falls asleep for the

night. He woke up his usual

> time around 9:30PM to go to the bathroom, so I took him in and

brought him back to bed only this time he did not fall back to sleep.

> He was saying things like it was time for him to go and that he

didn't want to leave me. I told him it's ok, I'll be fine but I will

miss him and I told him I love him very much and he smiled and

said, " thank you " He said he felt like crying. I told him it's ok to

cry, but he didn't cry. He told me he was a coward and didn't want to

leave this world. It went on like this for a good hour and a half. He

didn't want me to walk out of the room and when I told him I have to

go, it was then 11PM, he screamed for me to come back and

said, " don't leave! "

> Just yesterday, he was joking and laughing with everyone. All the

staff was saying what a great mood he is in. Not just yesterday, but

the last few days. Last night tore me apart to see him like that. How

this disease fluctuates! If this continues he may have to be put on

an antidepressent.

> I WILL NOT ALLOW ATIVAN and they already have that on their charts

at the nh. What is recommended for LBD as an antidepressant? Is

Lexapro recommended? I know it is not a benzodiazepine. If this kind

of behavior continues, I might have to think of putting him on an

antidepressant.

>

July 18, 2008

Jan, Im sorry, the " IT " I was referring to is the anti depressant Paxil.I havent

gotten my coffee fix yet this morning and my mind is barely crawling along.I do

hope things get better.heartfelt best Ron

depression

Yesterday, I was visiting Jim at the nh.. It's the first time I have ever seen

him actually depressed.

Everything was as usual earlier in the evening. I took him to an outdoor concert

in a shopping plaza that we go to weekly. I pull up in a hanicap parking space

right next to the concert. The space has been there every week for us. Amazing!

I put the top down on the convertible and we are right amongst the concert. He

enjoys it. We got back to the nh after the concert and he got ready for bed and

fell asleep very fast. It was around 8:30PM. I sit and read a book next to his

bed until around 10PM, because almost like clock work around 9:30PM, he will

wake up and have to go to the bathroom. He will hold on for as long as possible

and he gets very restless. I know if I wasn't there to take him, he would hold

on for a very long time and then release in his diaper and be in a wet diaper

all night. I think this helps to contribute to his frequent UTIs, so I stay to

bring him to the toilet one last time before he falls asleep for the night. He

woke up his usual

time around 9:30PM to go to the bathroom, so I took him in and brought him back

to bed only this time he did not fall back to sleep.

He was saying things like it was time for him to go and that he didn't want to

leave me. I told him it's ok, I'll be fine but I will miss him and I told him I

love him very much and he smiled and said, " thank you " He said he felt like

crying. I told him it's ok to cry, but he didn't cry. He told me he was a coward

and didn't want to leave this world. It went on like this for a good hour and a

half. He didn't want me to walk out of the room and when I told him I have to

go, it was then 11PM, he screamed for me to come back and said, " don't leave! "

Just yesterday, he was joking and laughing with everyone. All the staff was

saying what a great mood he is in. Not just yesterday, but the last few days.

Last night tore me apart to see him like that. How this disease fluctuates! If

this continues he may have to be put on an antidepressent.

I WILL NOT ALLOW ATIVAN and they already have that on their charts at the nh.

What is recommended for LBD as an antidepressant? Is Lexapro recommended? I know

it is not a benzodiazepine. If this kind of behavior continues, I might have to

think of putting him on an antidepressant.

July 18, 2008

Jan,

This just made me want to cry. I totally feel for Jim and you. I know my mom was

on Prozac for a short time. It takes about a month until they feel different.

Kaiser seems to be old school on a lot of their meds. Just warning you. I hope

he was just having an off day. That is the one thing my mom never could do was

ask me to take her home. I can only imagine how awful that must be for you all

who have experienced it. My mom's mind was just about totally gone when I had to

put her in the NH. She is doing very well now in the Residential Care Home. She

is more at peace. In fact, they are having a hard time waking her to feed her. I

think she was much more anxious in the NH with all the noise and moving her

constantly etc.. She stays in bed now with a air mattress thing. They only move

her to change her. She is in a lovely room with a great view of a garden in

their backyard. She can look at through the french doors. She listens to music

or the TV is on

some of the time. She always loved it quiet and that is one thing she could not

get in the NH. I am so glad I made the change. I think she may be able to let go

now and let God take her home. She is sleeping more and just seems content. I

wish I would have figured this out years ago. She may last for years yet, but

she is very, very peaceful. I just feel so much better about where she is too.

I will keep you and Jim in my prayers Jan.

Are you coming down to Laguna this summer? For Meredith's annual party?

Did Stevie email you? Just wondering.

Dena in SoCal

Mother (85) Existing with LBD in Residential Care Home

Subject: depression

To: LBDcaregivers

Date: Friday, July 18, 2008, 8:31 AM

Yesterday, I was visiting Jim at the nh. It's the first time I have