Bad Days

February 16, 1999

Hi Kathy!

My prayers are with you. My son also tried prozac, for approximately

three months. His OCD symptoms worsened and he went into a deep

depression. He also started having anxiety attacks.

Remember that every person is different and a medication that works

for one may not work for another. Keep a journal and alert your Dr. to

any changes. There are other medicines to try. My son is currently on

Zoloft and anafranil.

It is very important that you talk openly to your Dr. in front of your

daughter

and let him know how her behavior is different when she is with him.

Good luck and keep me posted. I care.

February 16, 1999

Hi Kathy R,

I can identify with the up all night thing!! Also with the acting

perfectly normal when she is around others. It took from Sept to Jan

for the teachers at my son's school to truly see what he is all about.

Now they want the " old " back. I can only imagine what they

would do if they actually had the " old " back. He has come so

far in the last few years. This is something I have to keep reminding

myself of when we get to points like we are at now. He is once again

out of control. Even though it is better than before it almost seems

worse since we have had a glimpse of what he can be like when things

are going well. We are still fighting to get out of our bed

into his, the nightmares will never allow this to happen. The are

getting worse on a daily basis. Two nights ago he knocked my tooth

through my lip while I was sleeping. He was screaming and flinging

his arms looking for me, I was right beside him and his dad was on the

other side. My poor husband is getting so little sleep, I can see it

taking it's toll on him. Last night he spent about 20 minutes

restraining to calm him down.

As far as being concerned about having to take her to the ER and them

seeing bruising,etc. I would be letting my primary care doctor and

psychologist know what is happening. They should be able to back you

up just in case someone would question the marks. It's like living

under a microscope, always worrying what people will think, say, or do

because of what is happening with your child. Believe me I've more

than once come to tears worrying over the same thing.

It sounds awful but it is so nice being able to have contact with

other parents and be able to express our feelings without the fear of

being condemned. My own mother, bless her heart, just can't seem to

understand why he can't stop obsessing on things. She always tries to

reason with him, as I also did more often in the beginning. It just

doesn't work, often it opens up a whole new avenue of obsessing.

Take care and stay strong,

Kay D

February 16, 1999

I am new to this list, but am an active person on the ocd-spouce

list. My husband and 3 children (15,13,9) all have OCD. Everyone is on

medication. The doctor works with us as a team and I'm the team leader.

I am a social worker by profession, and this really helps. At present I

work with youth. At present, we live in Canada.

I know this all sounds stuffy, but I am really an aproachable person,

so if anyone wants to contact me, please feel welcome!

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

Kathy R,

I know what you mean about abusive signs on your daughters body. My

son was/is much the same. I call the doctor and report any specific

episodes so that they are documented. This worked to our benefit. My son

(again) called Childrens Aid (social services) and yelled abuse. The

doctor backed our story - and identified my son as the abuser that he

is. Keeping a diary is good - but may not necessarily stand up as

legitimate. If your doctor is not accessable, ask if there is another

service, such as a social worker that can help you.

Re: medication. If your daughter is having such adverse reactions to

her Prozac she needs to be back in the doctors office. My experience is

that you need to make it clear to your doctor that you are part of a

team - OCD requires team work. The medication is not working - either

change it, increase it, or do something else! Bang on tables - if you

need to!!!!

The sleeping issue needs to be addressed, but I wouldnt do it yet.

Once her medication is better managed, she may feel more secure, and

therefore sleep.

wow, I have gone on, sorry!

take care, Kathy, you'll survive!

wendy

February 16, 1999

HI Kathy:

I am sorry to hear how hard it has been for your daughter being so involved

in the self-harm behaviors. These are so very upsetting to observe, my

heart goes out to you and your family. You are showing amazing patience in

waiting for the Prozac to kick in and these BSEs to subside. I am very

impressed.

We also used to worry about what people might think about all the sores

(picked), crazy hair cuttings, suicide attempts, etc. What I think is that

no one would like to deal with a kid with these kinds of problems and they

won't take our son away from us because they wouldn't know how to handle

the tough times. Strangely this gives me reassurance that he is ours no

matter what.

What you describe about keeping a lid on it is very typical. I think that

is why I have even been accused of being a Munchausen's-by-proxy mom.

Early on my son could do this too and many well-meaning friends thought we

were crazy to think something was really wrong. What I found was when they

were over during a severe OCD attack they really changed their minds fast.

Being able to keep a lid on is very helpful to our OCDer, they feel a bit

less out of control. It takes its toll though and they rapidly decompress

coming home. At first my son used to ask me to take him out and about so

he could keep things together and we had quite a bit of fun going to

Borders. When it got really bad though going out did not help anymore to

keep a lid on.

Please watch out for the sleep deprivation, it can make dealing with OCD

even more challenging. I hope you can get some good rest soon. take care,

aloha, Kathy (H)

At 11:05 AM 2/16/99 -0500, you wrote:

Hi everyone, well my daughter has been on Prozac for 17 days now (feels

like 17 weeks.) She's had the worsening symptoms since she started it that

I've mentioned in other posts. She's worse yet with the compulsions and

hurting herself, which I guess are compulsions too, maybe because her Dad

had to leave on Sunday for a business trip. By now she's covered in little

bruises from pinching herself and her belly has striped bruises of various

shades from pressing herself hard against the edges of tables and so forth.

She's back to having explosive rages and kicked the dishwasher so hard

this morning she dented it. I'm honestly worried I'll have to take her to

the ER after one of these explosions and they will see all these

bruises--what then?

One of my own problems in all this is that somehow, when she's with her

therapist or psychiatrist or anyone else really, she manages to put a lid

on her compulsions and her anger, and she seems pretty much ok to anyone

who doesn't know her well. She chats, smiles, " acts " fine. But as soon as

we leave she explodes, and the hurting behavior and the constant other

compulsions start again. Her father and I are the only ones so far to see

these, and friends and family who we've told of our daughter's OCD think we

are making a mountain out of a molehill, and seem to suspect that we are

overanxious parents overreacting to normal five-year-old behaviors.

Sigh. Particularly bad day with this stuff since I was up all night with

it. Kel never slept more than an hour or so together last night--many bad

dreams, that's a new one--and so, neither did I. :-(

Thanks, Kathy R.

..

February 16, 1999

Hi Kathy,

My son also reacted to prozac, I called his Dr. after just a few

days of his ocd becoming worse. (he also was 5) He was really sensitive to

prozac, he told me

he didn't like the way it made him feel. We did not push it any further,luckly

his

Dr. listens to him. We finally ended up with a simple 25mg of zoloft a day,

and 0.5 mg clonidineat bedtime. he has been doing really good for 8mos now.

Even as a baby

he never would sleep more than 1 full hour at night . I found with Spencer

the

more tired the worse the ocd, so when the various meds and doses made him

tired it was circle time.. At least the clonidine gives him a good night

sleep.

I hope things get better for you and your daughter. Serena

February 16, 1999

In a message dated 2/16/99 2:59:20 PM Eastern Standard Time,

kathyh@... writes:

<< We also used to worry about what people might think about all the sores

(picked), crazy hair cuttings, suicide attempts, etc. >>

Perhaps you could videotape your child during one of his/her tantrums and

keep it on hand just in case! Hope this helps,

February 16, 1999

In a message dated 2/16/99 6:54:06 PM Eastern Standard Time, desk@...

writes:

<< Away from me, she " keeps a lid on it, " as you

said. At school, for example, she does very well. Alone with my

husband, she shows maybe only 10 to 25% of her symptoms. As soon as I

enter the picture, anything she's experiencing can become full blown. >>

It's because she feels most safe with you and can let it all out. It's not a

lot of fun but it tells you that you are a very important person in her life!

Imagine taking it as a compliment!! LOL It can't hurt to think positive I

guess! Hope this helps,

February 16, 1999

Dear Kathy R.,

How difficult for you to deal with all this while your husband is on a

business trip. Please know that I am with you in spirit.

You are not alone - my daughter's worst angry behavior and

uncontrollable anxiety shows itself in my presence, whether we are in

public or alone at home. Away from me, she " keeps a lid on it, " as you

said. At school, for example, she does very well. Alone with my

husband, she shows maybe only 10 to 25% of her symptoms. As soon as I

enter the picture, anything she's experiencing can become full blown.

We have also worried in the past that the neighbors would hear her

screaming and report us to the authorities.

Her anxiety is also compounded by anger at me for not " fixing, " whatever

it is.

Yesterday, she practically drove people off the side of a mountain

during an OCD attack during a family hike.

Take care, Kathy, my thoughts are with you,

Lesli

>

February 16, 1999

Hi Kathy, Sounds like things are really hard right now. I'm sorry! I

think I know a little how you feel. My son Jeff was on Prozac for

about 2 months and all the while he was getting worse and worse. It

all blew up about 4 weeks ago at school when he had to take a timed

math test. Sence he knew he wouldn't be able to do it " perfectly " he

just blew. Fell a part right there in class. Up until that time all

the teachers and staff thought my husband and I were just making more

of some of Jeffs " bad behaviors or bad habits " then needed to be. We

got a lot more respect after that!

We did find out later after Jeff talked about suicide,( he's 9 and in

3rd grade) that he was having a toxic effect with the Prozac. This was

his 4th medicine. He is now on Celexa and BuSpar and doing SO MUCH

better! I agree with that maybe a med. Change might help. Not

that I'm a Dr. or anything....But just something to think about.

This OCD monster is hard to tame and share the same child with!!

Take care, I'll be thinking of you! )

---Kathy <klr@...> wrote:

>

> Hi everyone, well my daughter has been on Prozac for 17 days now

(feels like 17 weeks.) She's had the worsening symptoms since she

started it that I've mentioned in other posts. She's worse yet with

the compulsions and hurting herself, which I guess are compulsions

too, maybe because her Dad had to leave on Sunday for a business trip.

By now she's covered in little bruises from pinching herself and her

belly has striped bruises of various shades from pressing herself hard

against the edges of tables and so forth. She's back to having

explosive rages and kicked the dishwasher so hard this morning she

dented it. I'm honestly worried I'll have to take her to the ER after

one of these explosions and they will see all these bruises--what then?

>

> One of my own problems in all this is that somehow, when she's with

her therapist or psychiatrist or anyone else really, she manages to

put a lid on her compulsions and her anger, and she seems pretty much

ok to anyone who doesn't know her well. She chats, smiles, " acts "

fine. But as soon as we leave she explodes, and the hurting behavior

and the constant other compulsions start again. Her father and I are

the only ones so far to see these, and friends and family who we've

told of our daughter's OCD think we are making a mountain out of a

molehill, and seem to suspect that we are overanxious parents

overreacting to normal five-year-old behaviors.

>

> Sigh. Particularly bad day with this stuff since I was up all night

with it. Kel never slept more than an hour or so together last

night--many bad dreams, that's a new one--and so, neither did I. :-(

>

> Thanks, Kathy R.

>

<HR>

<!DOCTYPE HTML PUBLIC " -//W3C//DTD W3 HTML//EN " >

<HTML>

<HEAD>

</HEAD>

<DIV><FONT color=#000000 size=2>Hi everyone, well my daughter has been

on Prozac

for 17 days now (feels like 17 weeks.) She's had the worsening

symptoms

since she started it that I've mentioned in other posts. She's worse

yet

with the compulsions and hurting herself, which I guess are

compulsions too,

maybe because her Dad had to leave on Sunday for a business trip. By

now

she's covered in little bruises from pinching herself and her belly

has striped

bruises of various shades from pressing herself hard against the edges

of tables

and so forth. She's back to having explosive rages and kicked the

dishwasher so hard this morning she dented it. I'm honestly worried

I'll

have to take her to the ER after one of these explosions and they will

see all

these bruises--what then?</FONT></DIV>

<DIV><FONT size=2>One of my own problems in all this is that somehow,

when she's

with her therapist or psychiatrist or anyone else really, she manages

to put a

lid on her compulsions and her anger, and she seems pretty much ok to

anyone who

doesn't know her well. She chats, smiles, " acts " fine. But

as soon as we leave she explodes, and the hurting behavior and the

constant

other compulsions start again. Her father and I are the only ones so

far

to see these, and friends and family who we've told of our daughter's

OCD think

we are making a mountain out of a molehill, and seem to suspect that

we are

overanxious parents overreacting to normal five-year-old

behaviors.</FONT></DIV>

<DIV><FONT size=2>Sigh. Particularly bad day with this stuff since I

was

up all night with it. Kel never slept more than an hour or so together

last night--many bad dreams, that's a new one--and so, neither did

I. :-(</FONT></DIV>

<DIV><FONT size=2>Thanks, Kathy R.</FONT></DIV>

February 16, 1999

Hi :

Welcome to the list. I am looking forward to reading more

of your posts as I have really learned a lot from your posts to the

ocd-spouse list that I joined before this one was started. As a mom of

just one OCDer I am in awe of what you are dealing with. Your comment

about forming a team is very, very true. A problem we have found is that

mental health professionals tend to be loners and unaccustomed to working

in teams. Luckily we have found three (psychiatrist, psychologist and CBT

therapist) who enjoy being on the same team but it has taken tremendous

effort and I know how fragile and ephemeral these arrangements can be.

Take care, aloha, Kathy (H)

P.S. I have never read a " stuffy " post from you yet! K.

At 07:09 PM 2/16/99 PST, you wrote:

>From: " W. Birk " <wb4@...>

>

> I am new to this list, but am an active person on the ocd-spouce

>list. My husband and 3 children (15,13,9) all have OCD. Everyone is on

>medication. The doctor works with us as a team and I'm the team leader.

>I am a social worker by profession, and this really helps. At present I

>work with youth. At present, we live in Canada.

> I know this all sounds stuffy, but I am really an aproachable person,

>so if anyone wants to contact me, please feel welcome!

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

>

>Kathy R,

>

> I know what you mean about abusive signs on your daughters body. My

>son was/is much the same. I call the doctor and report any specific

>episodes so that they are documented. This worked to our benefit. My son

>(again) called Childrens Aid (social services) and yelled abuse. The

>doctor backed our story - and identified my son as the abuser that he

>is. Keeping a diary is good - but may not necessarily stand up as

>legitimate. If your doctor is not accessable, ask if there is another

>service, such as a social worker that can help you.

>

> Re: medication. If your daughter is having such adverse reactions to

>her Prozac she needs to be back in the doctors office. My experience is

>that you need to make it clear to your doctor that you are part of a

>team - OCD requires team work. The medication is not working - either

>change it, increase it, or do something else! Bang on tables - if you

>need to!!!!

>

> The sleeping issue needs to be addressed, but I wouldnt do it yet.

>Once her medication is better managed, she may feel more secure, and

>therefore sleep.

>

>wow, I have gone on, sorry!

>

>take care, Kathy, you'll survive!

>

>wendy

>

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

>

February 16, 1999

HI :

Great suggestion, thanks. We had suffered from video aversion since the

first time my son went through the March protocol the whole thing was

videoed and I would have sleepless nights about some of the bad behavior on

there, also from my non-OCD son. Apparently about 10 psychiatrists were

watching these videos, or parts of them. I will remember to tape these

difficult behaviors, although luckily we are going through a great patch of

reasonable behavior right now. He is doing very well, we are enjoying it a

lot. Aloha, Kathy

wrote:

Perhaps you could videotape your child during one of his/her tantrums and

>keep it on hand just in case! Hope this helps,

>

August 1, 2008

Just venting.... yesterday I started having a bad swallowing day and I

know when that happens I'll be miserable for a couple of days. So,

today I'm having a hard time getting anything down. I just hate these

days. Living in Kansas and trying to get around with 4 kids while my

hubby works all day is kinda rough when I'm having a bad day. They are

all old enough to get around on their own which is really great. We

only live 2 blocks from the waterpark and we live in a very small safe

town. We also have no family that lives close by, so I'm struggling

with how do I take the time to get surgery when no one in my state is

an expert with this horrible disease? Flying out of town just really

isn't much of an option. I've been doing research on surgeons, but

none are within driving. I can't imagine flying somewhere for

consultations and appts. and surgery and then follow ups. Trying to

decide what to do for this has been really hard and I feel as if I've

hit a road block. There is just no way for me to be gone. So, do I

ask a local surgeon to look into helping me out?

Thanks for your advice and support

jen

August 1, 2008

Jen

Where abouts do you live in Kansas? I'm in NW Arkansas!

From: achalasia [mailto:achalasia ] On Behalf

Of Crouch

Sent: Friday, August 01, 2008 9:45 AM

achalasia

Subject: Bad Days