Who I am

[Guest guest]

sfaust@...

You forgot one small detail: your name!!

I have 3 children and a husband with ocd and depression. They probably

have more, since no one is treating them for the other things, its not

important.

I saw symptoms in my 16yo old son, Tom, since he was a baby. My middle

daughter, Adi (13), was definatly showing us symptoms by 2, but the

youngest, Ziv (10) was later. She is more of a worrier, hoarder than any

other ocd trait.

We are such a resouceful bunch - there isnt much that someone else hasn't

expereinced, so feel welcome in our community. We all have gone through the

guilts, and occasionaly return to them. the feeling of 'what if' is so

strong, but we have to move past that and use our energy to be proactive in

the future.

What accomodations are you making at school? Perhaps using a computer is

better for homework at this point. It is not an enabler if his anxiety level

is so high that he cant put pen to paper. That can come later... BTW, there

are 2 others that I know of from Indiana on our list. Are you seeing anyone

for yourself (most of us do, btw). Please dont be shy to ask questions,

that's how we all learn from each other....

Rule number one is: TAKE CARE OF YOURSELF!

take care, wendy, in canada

[Guest guest]

Sfaust,

Sorry, I didn't see your name from your post and I just use your email name.

I'm sorry that you are going through so much and feeling much frustrated. Lots

of us have been there and will still be there off and on. We have been with

quite a few different doctors and have not found a knowledgeable one yet. The

current one does not care much about 17 year old, but, the current

medication seems to be working somewhat. We just switched to a new therapyist

and don't know if he is good. We have tried many different medications and

sedation has always been a problem and forced us to give up. Throughout the

trial and error type of experiments, we now have better ideas to deal with it

(or get around with it).

There were times we felt so desperate, even doubt why he should exist or

why he should keep trying. Especially Chris's school does not understand the

problem and did not accomodate our needs. When I recall those days, tears come

into my eyes easily. Yes, homework was a big issue for Chris. He was often

stucked on reading the same page. The english did not and refused to understand

why he could not finish the reading assigments. Social problem was a major

issue in that school. He did not have any friend. He did not want to go to

school. Going to school in the morning used to be a big tug of war between us,

because the school has no positive attraction to him, only all the negative

effects. I don't blame Tyler to escape to the nurse's office to avoid the ugly

reality. For I found a way to get him out from the mess, I enrolled him

into a college and he is much happier there.

Unfortunately, it's normally a long process before you eventually found either

the right medication, the right doctor, the right CBT, or the right

alternatives. For us, changing school helps the situation for now. For Tyler, it

could be working with the current school for better ways to help him or even

switch to a different school and the new environment may suit him better. For

the kids, friends are very vital to them and affect their motivations a lot.

In the current school, can you ask to have some shadow partners to help Tyler

out in all aspects? Of course, these shadow partners need to be a more

understanding type of kids. As for the homework, can you ask the school to

reduce the load? Is Tyler in any special education plan, ie, 504 or IEP? If

so, you can make such request through the plan.

Please hang in there and vent your frustrations here. This list helped me

through the dark days. Best wishes to you.

TC

[Guest guest]

Hi!

Thanks for sharing your story. I know this is

difficult, but just wanted to say you are not alone.

My son 10 has all the problems you just listed. He

does not make friends easily, he is an easy target, he

spends a lot of time with the nurse etc, etc, etc,

Anyway, I am sure you get the picture, everything you

have mentioned so far could by my child.

I just wanted to offer some hope. My son, Brett,

takes prozac. This has eliminated the erasing, holes

in the papers and lengthy hours of homework. His

handwriting is now somewhat sloppy even. It has also

helped with some of the other anxieties. His

therapist has been excellent about giving him the

skills he needs to deal with the ocd as well as giving

us advice on parenting technics to deal with him. I

think you are right to switch therapists if you feel

you have not made progress. This seems to be fairly

common among many of the parents here. I feel

fortunate that we were lucky the first time out.

When things really get you down, remember to take a

look at the tiny steps of progress you have made. I

know that ocd is very disruptive and upsetting to the

whole family, but good days can be ahead. I always

think we are going 2 steps forward and 1 step back,

but we are moving ahead! This is all I have to hold

on to somedays.

Feel free to write, ask questions or just vent. I

think you will find this list an excellent source of

information and support.

Find sometime for yourself, it is important!!! And

please know you are not alone. We have all been there

at one time or another.

Take Care,

in PA

--- sfaust@... wrote:

[Guest guest]

Well by now you know you have to give us your name.

My daughter Molly also started Middle School this year. It is a hard time

for kids with no issues.

You mentioned all the years of fighting. God, can I relate to that. It is

easy to berate ourselves. Go easy on yourself about what's happened in the

past. I once read a statement, " any mistakes we made that were made out of

love can be fixed. " You obviously love your son, it came through loud and

clear.

I had a very hard time accepting Molly's OCD in the beginning. But now it

is actually a help to know why she does what she does. And it has really

eliminated so many of my fights with her. My husbands fights with her are

another issue.

Sometimes we forget that all adolescents can try our patience. It is their

job. Add the quirks of OCD and I am sure each parent here finds themselves

on the end of their ropes pretty frequently.

You received some good advice from one of our other parents earlier.

TAKE CARE OF YOURSELF!!

I am on Zoloft myself. It keeps me from losing my temper and feeling

totally overwhelmed.

I am still a newbie her put everyone has been warm, supportive and

incredibly informative.

As to the school, I have learned, thanks to this list, about a 504 Plan.

The school, myself and Molly's psychologist have set up an interim plan

while Molly is being evaluated. I am lucky in that this little public

school in rural New Hampshire is willing to do anything they need to. You

should look into the 504 Plan and other resources. The Mom, Kathy Hammes

seems to be the 504 Queen.

Our kids do need us to help them get some relief from their anxieties.

We need relief also, remember that.

Thank you for sharing, I know how hard that is.

Patti R.

[Guest guest]

Hi sfaust,

Welcome to the list. My daughter andra (6) was diagnosed with OCD a

year ago, but she was clearly showing symptoms since age 3 and probably

before. She has sensory issues, as well. (About sock seams: she used

to fold HALF of her sock up over her toes and then stuff it in her

shoe!)

What you wrote about guilt really struck home. Perhaps it will help you

to think of it as regret, rather than guilt. We experienced the same

thing (shouting, losing our tempers) before we knew that we were dealing

with OCD. Once we learned how much andra had been suffering we felt

terrible. I learned to frame these feelings as regret (for what you

would like to have done) through a bereavement support group.

Take care,

Lesli (Bay Area)

[Guest guest]

Hello Tyler's mom,

Reading your story brought tears to my eyes (and I'm a man!), but your story

could be ours, and as you have read, other's on this list share. Our daughter

Tori is now 14 and was initially dx with exactly what Tyler was. The socks,

the clothes, order, perfectionism, erasing, her hair, her severe fears as a

child (with a fear of toilets that still is with her), erasing, endless

homework, specific contaminations, social difficulties (Tori cannot forget any

perceived wrong doing from another child, even as far back as age 4), school

refusal,..... the list goes on.

I should say that Tori is a wonderful, bright, creative and humour filled

child. Although we have been through some very dark times we still have moved

forward. Tori has seen 6 different doctors, some good some bad. She was on

Luvox for a short time but refuses to take anything now. She has not attended

school for two years ( an issue we are trying to resolve through a home tutor

system).

One thing I would like to mention since Tyler's and Tori's story is so much

alike is AS. I've mentioned this before to the group. We were told by Tori's

doctor to look into a dx of Asperger's Syndrome. I wonder if you have look

into this? It can present itself much the same as OCD or even co-exist with

AS. It helped us approach our daughter's treatment and her dealings with life

in a new light. A very good site to look into is at

http://www.udel.edu/bkirby/asperger

All the best,

from Canada

[Guest guest]

I appreciate you clearing the air JR. I live in Wilmington, NC now but grew

up in NY and have traveled the world. I am not hiding behind my screen name,

My name is Stuart Kaplan. I do not profess to be an expert in nutrition. I

have studied and practiced for over twenty years and have observed the power

of good nutrition. JR I gave my mother advice since 1975, I supplied her with

supplements that were unopened on her shelf six months later. A prophet is

never recognized in his own country. I was not surprised to hear of the

initial colon cancer. I knew she would not change but I did do something that

seems to have really helped. I teach meditation- I am not a California

" weirdo " but the evidence is clear that it helps on many levels. I also teach

yoga and deep relaxation. I made a tape for my Mom to listen to-in the spirit

of the Simontons- their classic book Getting Well Again. She listened to it

and it gave her peace. She did try Chemo but stopped after the terrible side

effects. She lived three years with very little discomfort. She actually

gained weight and was fully conscious and laughing till the day she died. I

am now looking into mind body techniques and would appreciate any direction

you could give me, I am relatively new to the Internet and I do see the

tremendous power it has. I have started making tapes for my patients now and

I see this as part of my healing work. I have seen your keen mind at work, I

know you are looking out for people and will point out ignorance and greed,

thank you for that. I assure you I am speaking the Truth and want to

contribute what I can to people with dis-ease.

Sincerely,

Dr K (Stuart Y. Kaplan DC)

[Guest guest]

Welcome Carolyn ,

Glad you have your family to support you and your son . I have a

nephew who has a very rare Syndrome call Treacher and his

father could not accept him , too . Out of the picture , too . My sis

had a hard time at first , but realize she was able to Love and care

for her son on her own , also knowing her family were here for

support . That was 18 yrs . ago , going on 19 in Sept . and he is

such a joy . My sis is happily married now and my brother-in-law

welcomed him with open arms , that was about 7 yrs. ago . Now when my

nephew comes over to visit me he loves to try teach my son

DS/ASD things that I can't make him understand . Just love watching

them together . Sounds like you're doing a great job for your son ,

keep it up . Take Care .

Irma , 12 Ds/ASD .

-- In @y..., carolyn treadwell <crtreadwell@y...> wrote:

> I am a new member, 35 year old mother of 1. I live in

> Temple Texas in an ajoining home with my parents.

>

> I am a single mom to my son Danny, his father could

> not handle his child being born with a disability and

> is out of the picture. Danny is surrounded by love

> however. I have a great family.

>

> Danny is 10 years old and the light of my life. he is

> in the local public school system here, near my home

> but I am checking out other options for him, so I will

> be glad to see other perspectives. I would like to

> know the storys of some of you.

>

> Carolyn

>

> __________________________________________________

>

[Guest guest]

Great to meet you carolyn! my son nathan is 9yrs, will

be 10 in august, so very close in age. has been

fully integrated since 4yrs of age in preschool, but

for this fall he would be going into fourth grade, we

have opted for a classic classroom setting, as have a

few other parents of disabled children in the same

grades, We feel he is too far behind his peers to be

sitting in classroom not really learning anything, he

will still continue all specials with peers such as

p.e., music, art, computer, guidance, lunch recess

etc.

and allready spends most of his academic time in the

resource room, so it wont be much of a change for him,

just less transitions from room to room, and no more

waisted time. We feel integration has more than served

its purpose for him and his peers and now its time for

him to work on a more personal gain level. But

remember this is our situation, as danny's mom im

postivie you will know whats the best for danny.

shawna, mom to nathan 9yr w/ds, pdd, add/hd, ocd, and

nicholas 8yrs did great at babseball last nite,lol.

--- carolyn treadwell <crtreadwell@...> wrote:

> I am a new member, 35 year old mother of 1. I live

> in

> Temple Texas in an ajoining home with my parents.

>

> I am a single mom to my son Danny, his father could

> not handle his child being born with a disability

> and

> is out of the picture. Danny is surrounded by love

> however. I have a great family.

>

> Danny is 10 years old and the light of my life. he

> is

> in the local public school system here, near my home

> but I am checking out other options for him, so I

> will

> be glad to see other perspectives. I would like to

> know the storys of some of you.

>

> Carolyn

>

> __________________________________________________

>

[Guest guest]

hi Carolyn iam Donna i'am kind of new to the board also ,i have a 12 year

old son with downs syndrome, his name is ,he will be 13 august 7 .i

also have a 6 year old liile girl with autism, is her name,they are my

heart, we live in new jersey. its nice to meet you

.

Donna

[Guest guest]

Carolyn,

Welcome to this wonderful group.

I just posted a brief bio on myself and Matt.

Has Danny been officially diagnosed with DS and ASD?

Seems like there are quite a few people on this list going through this

now.

Welcome, and we look for ward to hearing more from you.

S

On Fri, 1 Jun 2001 05:58:23 -0700 (PDT) carolyn treadwell

<crtreadwell@...> writes:

> I am a new member, 35 year old mother of 1. I live in

> Temple Texas in an ajoining home with my parents.

>

> I am a single mom to my son Danny, his father could

> not handle his child being born with a disability and

> is out of the picture. Danny is surrounded by love

> however. I have a great family.

>

> Danny is 10 years old and the light of my life. he is

> in the local public school system here, near my home

> but I am checking out other options for him, so I will

> be glad to see other perspectives. I would like to

> know the storys of some of you.

>

> Carolyn

>

> __________________________________________________

>

[Guest guest]

Hi Carolyn

My name is Kathy and I have a son, , who has DS-ASD . is 11 years

old and we live in Folsom, California (just outside Sacramento)

Nice to meet you

Kathy

Who I am

> I am a new member, 35 year old mother of 1. I live in

> Temple Texas in an ajoining home with my parents.

[Guest guest]

Hi, since my old buddies Zazzy and Bobby have introduced themselves, I think

I should also. I was diagnosed in 1996 just a few days past my 67th birthday.

Not much information forthcoming, in fact it looked so bleak, I planned my

funeral with my hairdresser. I have been on so many trials, I have the title,

Trial Queen. LOL. I have been married to my husband, Jimmy for over 52 years

and we have 5 boys. If I tell you their ages, I would be giving my own age

away. As though you couldn't do the math. LOL.

Yes, I was on the hated INF, but at the same time, I had an infusion pump

with a CVC in my chest to receive HHT which was a trial drug. I do have one

favor, it would be helpful if you would sign your name to your post, so the

newcomers would get to know you. Thanks.

Good luck to you , with your Sprycel. I was on it a little over 2

years, but had problems with pleural and pericaradial effusions and pneumonia.

I am now in the SKI 606 trial. I had severe side effects on that, too. The

hives were so extensive I had to stop taking ski for about 3 weeks. I went to

an internist who ordered every test there was from gastro and they are all

negative, but I still have the stomach pain. I do have an appointment next week

to see if they can give me anything.

I didn't get any cytogenic results with the other drugs, but even on a 300

mg. dose (which is low and may even be sub-optimal), my last BMA showed I only

have 65% Ph+ cells. I am pleased with that. My WBC is always low, the last one

was 2.5, RBC is 3.28, Hgb is 27.8 and Hct is only 9.5. When it gets to 8, then

I need a transfusion. Now there are warnings that Procrit and Arensep may

cause or raise risk of death in cancer patients, along with even higher blood

clot risks. I thought about that for a long time and if I can get along

without it, I will. http://tinyurl.com/yu53uz

Going back to anemia and iron, you do have to be careful when and why you

take iron. Here is a letter from Dr. Lam, who is an M.D. and Nutritionist. Take

from it what you will. Also see the attached supplement facts table.

http://www.drlam.com/Supplements/Supplementfacts.html In another letter he told

me that leukemia was an iron loving disease, to keep that in mind. Check with

your doctor, no matter what we post, we are not doctors, we are only sharing our

experience.

YOu dont need to take iron becuase your body already has enough, provided

that you are not anemic. Iron is added only in laboratory cell cultures and

not in clinical use. The dosage varies depending on the weight, and the

person. It varies from 200 to 1000 a day. There are also some signs to look

out for . The good news is that CML is a good " cancer " to have, and with

your age, you can outlast it.

Dr. Lam (www.drlam.com)

Bobby, bananas are rich in potassium, that is why when you are Lasix you should

eat bananas to replish the potassium lost in the fluids (urine). Potassium

deficiency causes heart attacks. I usually eat one with my breakfast. Good to

see your posting.

Cheers,

Lottie

[Guest guest]

Hi Lottie,

Thank you for your post. You are so generous with information and support for

others that I just assumed (bad idea) that you were doing well. Queen of the

trials, huh?

You have really been through it. I must tell you that I am now doing quite well

and do not have any pleural effusion, peripheral neuropathy or any other side

effects at present so I am truly enjoying my Life.

If you don't have a taste for bananas or some of the other foods you can eat to

raise your level of potassium, you can take potassium pills. If you take Lasix

in the morning then I have read (on this List, I think) that you should take

your potassium in the afternoon so that it is not peed out of you along with the

Lasix. Good advice, I think, that I never received before. It was from a

nurse, too.

All the best,

L

[ ] Who I am

Hi, since my old buddies Zazzy and Bobby have introduced themselves, I think I

should also. I was diagnosed in 1996 just a few days past my 67th birthday. Not

much information forthcoming, in fact it looked so bleak, I planned my funeral

with my hairdresser. I have been on so many trials, I have the title, Trial

Queen. LOL. I have been married to my husband, Jimmy for over 52 years and we

have 5 boys. If I tell you their ages, I would be giving my own age away. As

though you couldn't do the math. LOL.

Yes, I was on the hated INF, but at the same time, I had an infusion pump with

a CVC in my chest to receive HHT which was a trial drug. I do have one favor, it

would be helpful if you would sign your name to your post, so the newcomers

would get to know you. Thanks.

Good luck to you , with your Sprycel. I was on it a little over 2 years,

but had problems with pleural and pericaradial effusions and pneumonia. I am now

in the SKI 606 trial. I had severe side effects on that, too. The hives were so

extensive I had to stop taking ski for about 3 weeks. I went to an internist who

ordered every test there was from gastro and they are all negative, but I still

have the stomach pain. I do have an appointment next week to see if they can

give me anything.

I didn't get any cytogenic results with the other drugs, but even on a 300 mg.

dose (which is low and may even be sub-optimal), my last BMA showed I only have

65% Ph+ cells. I am pleased with that. My WBC is always low, the last one was

2.5, RBC is 3.28, Hgb is 27.8 and Hct is only 9.5. When it gets to 8, then I

need a transfusion. Now there are warnings that Procrit and Arensep may cause or

raise risk of death in cancer patients, along with even higher blood clot risks.

I thought about that for a long time and if I can get along without it, I will.

http://tinyurl.com/yu53uz

Going back to anemia and iron, you do have to be careful when and why you take

iron. Here is a letter from Dr. Lam, who is an M.D. and Nutritionist. Take from

it what you will. Also see the attached supplement facts table.

http://www.drlam.com/Supplements/Supplementfacts.html In another letter he told

me that leukemia was an iron loving disease, to keep that in mind. Check with

your doctor, no matter what we post, we are not doctors, we are only sharing our

experience.

YOu dont need to take iron becuase your body already has enough, provided

that you are not anemic. Iron is added only in laboratory cell cultures and

not in clinical use. The dosage varies depending on the weight, and the

person. It varies from 200 to 1000 a day. There are also some signs to look

out for . The good news is that CML is a good " cancer " to have, and with

your age, you can outlast it.

Dr. Lam (www.drlam.com)

Bobby, bananas are rich in potassium, that is why when you are Lasix you

should eat bananas to replish the potassium lost in the fluids (urine).

Potassium deficiency causes heart attacks. I usually eat one with my breakfast.

Good to see your posting.

Cheers,

Lottie

[Guest guest]

Lottie-

Thanks for the great info.

Wow- married for 52 years there has to be a special

award for that. I stopped drinking alcohol but how

about bananas all around -we could all use the

potassium. Good luck to you and nice to meet you.

Chi

--- Lottie Duthu <lotajam@...> wrote:

> Hi, since my old buddies Zazzy and Bobby have

> introduced themselves, I think I should also. I was

> diagnosed in 1996 just a few days past my 67th

> birthday. Not much information forthcoming, in fact

> it looked so bleak, I planned my funeral with my

> hairdresser. I have been on so many trials, I have

> the title, Trial Queen. LOL. I have been married to

> my husband, Jimmy for over 52 years and we have 5

> boys. If I tell you their ages, I would be giving

> my own age away. As though you couldn't do the

> math. LOL.

> Yes, I was on the hated INF, but at the same

> time, I had an infusion pump with a CVC in my chest

> to receive HHT which was a trial drug. I do have

> one favor, it would be helpful if you would sign

> your name to your post, so the newcomers would get

> to know you. Thanks.

> Good luck to you , with your Sprycel. I

> was on it a little over 2 years, but had problems

> with pleural and pericaradial effusions and

> pneumonia. I am now in the SKI 606 trial. I had

> severe side effects on that, too. The hives were so

> extensive I had to stop taking ski for about 3

> weeks. I went to an internist who ordered every

> test there was from gastro and they are all

> negative, but I still have the stomach pain. I do

> have an appointment next week to see if they can

> give me anything.

> I didn't get any cytogenic results with the

> other drugs, but even on a 300 mg. dose (which is

> low and may even be sub-optimal), my last BMA showed

> I only have 65% Ph+ cells. I am pleased with that.

> My WBC is always low, the last one was 2.5, RBC is

> 3.28, Hgb is 27.8 and Hct is only 9.5. When it gets

> to 8, then I need a transfusion. Now there are

> warnings that Procrit and Arensep may cause or raise

> risk of death in cancer patients, along with even

> higher blood clot risks. I thought about that for

> a long time and if I can get along without it, I

> will. http://tinyurl.com/yu53uz

> Going back to anemia and iron, you do have to

> be careful when and why you take iron. Here is a

> letter from Dr. Lam, who is an M.D. and

> Nutritionist. Take from it what you will. Also see

> the attached supplement facts table.

>

http://www.drlam.com/Supplements/Supplementfacts.html

> In another letter he told me that leukemia was an

> iron loving disease, to keep that in mind. Check

> with your doctor, no matter what we post, we are not

> doctors, we are only sharing our experience.

>

> YOu dont need to take iron becuase your body already

> has enough, provided

> that you are not anemic. Iron is added only in

> laboratory cell cultures and

> not in clinical use. The dosage varies depending on

> the weight, and the

> person. It varies from 200 to 1000 a day. There are

> also some signs to look

> out for . The good news is that CML is a good

> " cancer " to have, and with

> your age, you can outlast it.

> Dr. Lam (www.drlam.com)

>

> Bobby, bananas are rich in potassium, that is why

> when you are Lasix you should eat bananas to replish

> the potassium lost in the fluids (urine). Potassium

> deficiency causes heart attacks. I usually eat one

> with my breakfast. Good to see your posting.

> Cheers,

> Lottie

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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