New Here Too

[Guest guest]

My heartfelt sympathy. Sue

[Guest guest]

Thank you Sue. Re: [ ] New Here too My heartfelt sympathy. Sue

[Guest guest]

,

Welcome to the group.

I also have a boy with AS named Eli :-) , but he is in 7th grade now. In

addition,

I have a 9th grade boy with AS, and both of us parents seem to have AS also.

Neither of my kids was identified as AS until they were older and school

disasters started (5th grade). Starting with kindergarten, however, they both

complained that " school is a waste of my time trying to teach me stuff I already

know. "

Some advice that may help (assuming you aren't already doing this) is to make

sure Eli knows in advance what is going to happen. This includes things like

going to a playground. Try to let him participate in making schedules for

things that need to be done. Then he won't be surprised/disrupted by

something he doesn't expect.

Remember: We all know that he is not " just spoiled " .

in Massachusetts

[Guest guest]

Hi Mandy,

I am so sorry about how much you are suffering. Have you started any meds?

This is a great group to belong to.

God Bless, Sue.

Mandy <mjdelahunt@...> wrote:

I was just diagnosed 2 weeks ago. I have had a strange water

blister like rash on my elbows and knees and scalp since I was 14.

It came and went once or twice a month. My dermatologist told me it

was hormonal. I have just been so sore and my feet feel like they

are going to explode, my fingers hurt in the cold etc, etc. My

lower back also kills me. I dread standing up after a long period

of sitting, it's agony. I am 29 but feel like I am sooo much

older. What can I expect down the road???

Thanks,

Mandy

[Guest guest]

Hi Sue!

No not yet. I have to get a sacral spine xr yet, but had more lab

work drawn. My next appt w/ Rheumy is on the 17th. Thanks for the

welcome! I will post when I know more.

Mandy

>

>

> I was just diagnosed 2 weeks ago. I have had a strange water

> blister like rash on my elbows and knees and scalp since I was

14.

> It came and went once or twice a month. My dermatologist told me

it

> was hormonal. I have just been so sore and my feet feel like they

> are going to explode, my fingers hurt in the cold etc, etc. My

> lower back also kills me. I dread standing up after a long period

> of sitting, it's agony. I am 29 but feel like I am sooo much

> older. What can I expect down the road???

> Thanks,

> Mandy

[Guest guest]

Hi Mandy,

I'm glad you found us. Just sorry you had to. Are you seeing a

Rheumatologist? If not you should get an appointment and see what he can come up

with to

help you. A lot of us have had similar problems at one time or another. With

the right treatment you CAN feel better. It's a case of finding the right

treatment for you.

This is a great group you have joined. Hopefully we can be of some help to

you with advice, sympathy or you can use us just to vent when you need to.

Good luck,

[Guest guest]

Hi Amy, I hope someone could provide some advice to

you on some of the symptoms.

I am 30 years old and i do have some joints and muscle

ache now and then. I am not sure if it is cause by

hyperthyroidism. At this moment of time, i still think

that it is cause by bad sleeping posture, bed, pillow

or just lack of adequate exercise. The ache are not

that bad, but it does make you feel so irritated and

annoyed most of the times. My main aching are around

the neck and shoulder. Anyway, as hyper causes

osteoporosis,i think we should take more calcium. Does

anyone else on the list have these sort of problem?

I am wondering why are you still taking inderal after

taking the PTU for the past five years?

I started on PTU and inderal 2 years ago. The GP

prescribe a dosage of 20mg of Inderal(propanolol) from

the start, but after a year of taking it, i decided on

my own accord to discontinue taking the inderal.

Inderal is prescribe for those with heart palpitation.

Since my hormone is under control, why should i

continue taking it? Would it affect my heart in the

long term? I think you should really check this out

with whatever doctors that you are consulting. Ask

them how does inderal works, and what would be the

long term affect it will have on a normal heart....

My first GP never ask me to stop Inderal, my second GP

advise me to stop (which i already did), my third GP

warn me of possible heart attack if i continue....!!!!

I am slowly reducing the dosage of PTU, currently i am

taking 100 mg of PTU. What is your dosage? Do you go

for regular blood test?

As for the diet, i never restrict myself, except of

food rich in iodine, but i still do take fish.

take care, hope to hear from you soon.

--- lucki721 <lucki721@...> wrote:

> Hello! My name is Amy and I have had Grave's

> Disease for about 7

> years now. I've been on PTU for about 5 years and

> Inderal LA for

> about the same time. I'm 28.

>

> I've had three kids, 4, 3 and 5 months. I recently

> have had a lot of

> problems with my hair falling out (I am afraid to

> brush it anymore)

> and those auras I was reading about? What is that

> all about? I

> thought it was my imagination. I have a lot of

> problems with my

> muscles and joints, was wondering if that was all

> part of it too.

> These are basically new symptoms, after having the

> baby. I haven't

> been able to find a good Endocrinologist in my area,

> I'm trying to get

> an appointment with a 3rd doctor.

>

> I am afraid to have the Radioactive Iodine, does

> anyone here have the

> same fears or have been thru it without problems? I

> am getting ready

> to have another blood test, and will share the

> results when I get them.

>

> Interesting stuff about acidic foods. I stay far

> away from tomatoes,

> I thought I was allergic to them! I like orange

> juice, I usually get

> the low acid type, or should I stay away from that

> as well? I drink a

> lot of milk and water, and caffiene? Forget it, I

> haven't had any

> caffiene for over a year now!

>

> Thanks for having a support group for

> hyperthyroidism, and look

> forward to reading more about this really difficult

> to understand

> disease.

>

> -Amy =)

>

>

>

>

Send instant messages to your online friends http://uk.messenger.

[Guest guest]

Dear Amy,

Welcome to our site, you are in the right place.

This site was begun as a way to explore alternative treatments for thyroid

disease. Most of us go on the meds, and then use nutrition, supplements,

acupuncture or other treatments to then treat the illness.

I myself do not believe in RAI, and was able to cure my own Graves disease in

a few months. I have been off of meds for about 7 years now, and am fine.

Please go to our sister site, iThryoid.com, to find ways to cope with this

illness, and read our archives for information.

Good luck, and good health,

AntJoan

[Guest guest]

wow, amy, I think in your case, you really need real

medical advise on taking (or tapering off) the

inderal. it wonders me that you are taking such a high

dosage of inderal.

have you ask your doc what causes the high blood

pressure? or why the need for 80mg of inderal? Could

all these be related to some pre or post pregnancy

stuff? i think you should really start finding

answers to some of your critical questions...

For my case, i took 20mg of inderal for more than a

year before stopping it entirely.

the fren of yours are suffering from hypothyroidism,

the opposite of our condition. Western doctors belief

that hypo-thyroidism is easier to deal with than

compared to hyper-thyroidism. As such, they will

recommend surgery to remove part of the thyroid gland

or in the case of your fren, RAI ( which kills thyroid

gland cells). There is no way that they could know the

perfect amount of thyroid gland to remove, as such,

they will usually remove more than necessary. By doing

so, the patient will become hypothyroidism - or lack

of the thyroid hormone. These people will then have to

take replacement hormone for the rest of their life.

I hope you could really read up on the net as much as

possible on both the condition of hypo- and hyper-

thyroidism. I would recommend you to read on a letter

by joey. search our list for his letters.

also, the website recommend by Ant Joan. I learn a

great deal from that.

i do not know your financial status, but if you're

good, then perhaps you could try this, they are on the

pricey side, but it seems that the success rate is

very high for those that have not gone for surgery or

RAI...

http://www.greenlife-herbal.com/Series_products/1/thyroid-throu.htm

--- lucki721 <lucki721@...> wrote:

> Hello again!

>

> I've tried to go off of Inderal a year ago, and it

> landed me in the

> hospital for a possible heart attack! My blood

> pressure was so high

> that they couldn't get a proper reading. At the

> time too, I was still

> drinking coffee everyday. With the exception of

> that block of time

> when they tried to reduce my Inderal, I've been

> taking the LA 80mg.

> once a day forever, lol! Even now, I have a pulse

> rate of about

> 90-110 all the time. It was much worse.

>

> I take 200mg of PTU, when I was pregnant, I was

> taking an extra pill.

> Before I was rushed to the hospital, I was taking

> 100mg a day. Now I

> went from being hot all the time to being ice cold

> all the time. I

> don't feel near as ill, but a little sleepy

> sometimes.

>

> I have goiters as well. They will not go away with

> RAI?

>

> I've heard of these symptoms all of the sudden

> disappearing, one of my

> friends had that happen to them. She had the

> bulging eyes, where as i

> do not. She takes synthroid.

>

> I'm going for a blood test Thursday. Hopefully now

> they should be

> somewhat evened out. I'm just concerned about my

> hair falling out

> like it has and the auras. Too much or not enough

> hormone?

>

> Thanks everyone for responding...have a great day!

>

> -Amy =)

>

Send instant messages to your online friends http://uk.messenger.

[Guest guest]

Thanks for your reply. It has been difficult to find a good

Endocrinologist here where I live. We are getting ready to move from

north to south in a few more months, and hopefully we will have better

health care where we are going, lol! We live in CT and moving to FL.

I've tried the lower dose of Inderal. Maybe I will talk to the doc

about it again, I haven't wanted to because of the heart palpitations

I had experienced before. I don't know, I've heard of people taking

much more Inderal for other things. It's the long acting kind (time

release), and I only take it once a day. I've been on it for 5 years

now. The PTU concerns me more, since I've been on it for 5 years as

well, I've heard it is not good for your bones. Consequently, my

teeth have fallen apart. I wish I didn't have to take either, lol!

I'm amazed with my crazy life that I remember to take it at all. But

I want to make sure what happened to me last year does not happen to

me again. Oh yes, believe it or not, they say that you really should

not take the PTU and Inderal together...why? It lowers the

effectiveness of (I think) Inderal. I space all my times apart

anyway, I used to take them together.

>

> > Hello again!

> >

> > I've tried to go off of Inderal a year ago, and it

> > landed me in the

> > hospital for a possible heart attack! My blood

> > pressure was so high

> > that they couldn't get a proper reading. At the

> > time too, I was still

> > drinking coffee everyday. With the exception of

> > that block of time

> > when they tried to reduce my Inderal, I've been

> > taking the LA 80mg.

> > once a day forever, lol! Even now, I have a pulse

> > rate of about

> > 90-110 all the time. It was much worse.

> >

> > I take 200mg of PTU, when I was pregnant, I was

> > taking an extra pill.

> > Before I was rushed to the hospital, I was taking

> > 100mg a day. Now I

> > went from being hot all the time to being ice cold

> > all the time. I

> > don't feel near as ill, but a little sleepy

> > sometimes.

> >

> > I have goiters as well. They will not go away with

> > RAI?

> >

> > I've heard of these symptoms all of the sudden

> > disappearing, one of my

> > friends had that happen to them. She had the

> > bulging eyes, where as i

> > do not. She takes synthroid.

> >

> > I'm going for a blood test Thursday. Hopefully now

> > they should be

> > somewhat evened out. I'm just concerned about my

> > hair falling out

> > like it has and the auras. Too much or not enough

> > hormone?

> >

> > Thanks everyone for responding...have a great day!

> >

> > -Amy =)

> >

>

>

> Send instant messages to your online friends

http://uk.messenger.

[Guest guest]

Hi again

If it helps you to rest your mind, many of us hypo people have major tooth

problems. I personally have had 6 root canals done in the past couple of years.

I am supposedly euthroid, taking eltroxin (synthetic thyroid hormone), but I do

suffer many hypo symptoms. Currently, in fact, I am in the process of

increasing my dosage slightly. There is frequently a thread about tooth

problems at the Hypothyroid Forum at http://thyroid.about.com/.

Kate

Re: New Here Too

Thanks for your reply. It has been difficult to find a good

Endocrinologist here where I live. We are getting ready to move from

north to south in a few more months, and hopefully we will have better

health care where we are going, lol! We live in CT and moving to FL.

I've tried the lower dose of Inderal. Maybe I will talk to the doc

about it again, I haven't wanted to because of the heart palpitations

I had experienced before. I don't know, I've heard of people taking

much more Inderal for other things. It's the long acting kind (time

release), and I only take it once a day. I've been on it for 5 years

now. The PTU concerns me more, since I've been on it for 5 years as

well, I've heard it is not good for your bones. Consequently, my

teeth have fallen apart. I wish I didn't have to take either, lol!

I'm amazed with my crazy life that I remember to take it at all. But

I want to make sure what happened to me last year does not happen to

me again. Oh yes, believe it or not, they say that you really should

not take the PTU and Inderal together...why? It lowers the

effectiveness of (I think) Inderal. I space all my times apart

anyway, I used to take them together.

>

> > Hello again!

> >

> > I've tried to go off of Inderal a year ago, and it

> > landed me in the

> > hospital for a possible heart attack! My blood

> > pressure was so high

> > that they couldn't get a proper reading. At the

> > time too, I was still

> > drinking coffee everyday. With the exception of

> > that block of time

> > when they tried to reduce my Inderal, I've been

> > taking the LA 80mg.

> > once a day forever, lol! Even now, I have a pulse

> > rate of about

> > 90-110 all the time. It was much worse.

> >

> > I take 200mg of PTU, when I was pregnant, I was

> > taking an extra pill.

> > Before I was rushed to the hospital, I was taking

> > 100mg a day. Now I

> > went from being hot all the time to being ice cold

> > all the time. I

> > don't feel near as ill, but a little sleepy

> > sometimes.

> >

> > I have goiters as well. They will not go away with

> > RAI?

> >

> > I've heard of these symptoms all of the sudden

> > disappearing, one of my

> > friends had that happen to them. She had the

> > bulging eyes, where as i

> > do not. She takes synthroid.

> >

> > I'm going for a blood test Thursday. Hopefully now

> > they should be

> > somewhat evened out. I'm just concerned about my

> > hair falling out

> > like it has and the auras. Too much or not enough

> > hormone?

> >

> > Thanks everyone for responding...have a great day!

> >

> > -Amy =)

> >

>

>

> Send instant messages to your online friends

http://uk.messenger.

[Guest guest]

Hi Amy,

I haven't been on this board much lately but just popped on and saw

your intro and wanted to respond. I was diagnosed with Graves this

year. I have a 4 year old and a 17 month old. I wanted to ask a few

questions to try to help you better. I have been learning so much

about this disease throught various boards, including Graves_support,

also on .

What dose of PTU are you currently taking and how long have you

been on that? Have you been able to get the following labs on a

regular basis - Free T3, Free T4 and TSH? It is very important that

you get these particular tests done if you haven't recently as they

are the only ones that can help you and your doc get you on the right

dose of PTU. Are they giving you the Inderal just for symptoms

associated with the Graves or for some other reason? Usually, a drug

such as that won't be needed once the correct dose of an antithyroid

med is figured out.

I too have been having my hair fall out in huge handfuls daily for

the past two months and it turned out that my old endo was

overmedicating me on PTU causing me to go a little hypo. Being hypo

due to meds could be causing you to have the problems with your

muscles and joints also. The only way to know for sure is to have

those two free tests done. Then even if you are in the

supposedly " normal " range you may still feel awful till you get to

the optimal numbers for your body. Most people do not feel well

unless they are at the mid to midhigh range of those labs. I had my

last endo tell me I should feel fine and that all my symptoms must be

due to something else. She was very wrong and uneducated but if I

hadn't learned all I have I would have continued with her and

continued at that too high dose and just got sicker and sicker.

Please wait on the Radioactive Iodine till you have exhausted the

option of getting proper treatment/dosage with the PTU and until you

have fully researched the effects of it. Most everyone who has had

it deeply regrets it. It causes one to be hypo for the rest of one's

life and that is not as easy to treat as docs will lead you to

believe. Also, Graves is an autoimmune disease not a thyroid disease

so you end up with the loss of your thyroid but you still have

Graves. For those patients who have some eye involvement it makes

that much worse. Also, you can't nurse if you are still and you

would have to stay away from family for a number of days. I don't

trust that it won't negatively effect future fertility and have heard

of woman who have had a lot of infertility problems after it. Gotta

run and feed my kids and do a little preschool homeschooling with

them.

P.S. If you haven't already read stuff by Elaine (Google her

name for more info) either on her website or in her book that would

be a good place to get more info. She has personally helped me

tremendously.

- In hyperthyroidism , " lucki721 " <lucki721@y...>

wrote:

> Hello! My name is Amy and I have had Grave's Disease for about 7

> years now. I've been on PTU for about 5 years and Inderal LA for

> about the same time. I'm 28.

>

> I've had three kids, 4, 3 and 5 months. I recently have had a lot

of

> problems with my hair falling out (I am afraid to brush it anymore)

> and those auras I was reading about? What is that all about? I

> thought it was my imagination. I have a lot of problems with my

> muscles and joints, was wondering if that was all part of it too.

> These are basically new symptoms, after having the baby. I haven't

> been able to find a good Endocrinologist in my area, I'm trying to

get

> an appointment with a 3rd doctor.

>

> I am afraid to have the Radioactive Iodine, does anyone here have

the

> same fears or have been thru it without problems? I am getting

ready

> to have another blood test, and will share the results when I get

them.

>

> Interesting stuff about acidic foods. I stay far away from

tomatoes,

> I thought I was allergic to them! I like orange juice, I usually

get

> the low acid type, or should I stay away from that as well? I

drink a

> lot of milk and water, and caffiene? Forget it, I haven't had any

> caffiene for over a year now!

>

> Thanks for having a support group for hyperthyroidism, and look

> forward to reading more about this really difficult to understand

> disease.

>

> -Amy =)

[Guest guest]

Hi!

Thanks for the response, I appriciate all your info. I take 200mg of

PTU (doc wanted me on 300! I opted no, lol, besides, she was an awful

doc, in the process of getting a new one). 80mg Inderal LA. Someone

here said it was a little high, but I really had an extremely high

pulse rate, in the 120-130 range resting. Now it's in the 90's.

Sometimes I think the Inderal works, other times no. I didn't even

think about having too much PTU, geesh, thank you so much for pointing

that out. I will get my labs ASAP, my husband hasn't been off work

early enough for me to run to the lab without the kids. I am suppose

to do a fasting lab for other reasons, but I will get the labs just

for thyroid on Monday (non fasting). My skin is breaking out like

crazy too (another symptom of too much thyroid hormone?). I will

definitely check out that website tonight when everyone is asleep,

lol! Did your hair come back in quickly after you evened out your

PTU? I have long hair too, kinda sad it has thinned out so much.

I do get labs on regular basis, it's been about 10 weeks since my last

one though, probably my hormones have evened out since having the baby.

-Amy =)

I've been on both PTU and Inderal for 5 years. Different doses of PTU

though, depending on if I was pregnant or not.

> > Hello! My name is Amy and I have had Grave's Disease for about 7

> > years now. I've been on PTU for about 5 years and Inderal LA for

> > about the same time. I'm 28.

> >

> > I've had three kids, 4, 3 and 5 months. I recently have had a lot

> of

> > problems with my hair falling out (I am afraid to brush it anymore)

> > and those auras I was reading about? What is that all about? I

> > thought it was my imagination. I have a lot of problems with my

> > muscles and joints, was wondering if that was all part of it too.

> > These are basically new symptoms, after having the baby. I haven't

> > been able to find a good Endocrinologist in my area, I'm trying to

> get

> > an appointment with a 3rd doctor.

> >

> > I am afraid to have the Radioactive Iodine, does anyone here have

> the

> > same fears or have been thru it without problems? I am getting

> ready

> > to have another blood test, and will share the results when I get

> them.

> >

> > Interesting stuff about acidic foods. I stay far away from

> tomatoes,

> > I thought I was allergic to them! I like orange juice, I usually

> get

> > the low acid type, or should I stay away from that as well? I

> drink a

> > lot of milk and water, and caffiene? Forget it, I haven't had any

> > caffiene for over a year now!

> >

> > Thanks for having a support group for hyperthyroidism, and look

> > forward to reading more about this really difficult to understand

> > disease.

> >

> > -Amy =)

[Guest guest]

Amy,

Do you know for sure that they have been ordering free T3 and free

T4 labs, please do check on that and let me know. My hair hasn't

come back in more because I am just getting my PTU reduced to 50 mg

from having been at 150 mg for the past 5 months. Some hair loss is

normal after having a baby but I imagine ours is due more to our

thyroid imbalances. I know what you mean about having a hard time

getting to the labs when we are caring for little ones. Part of why

I went untreated last Winter was I kept putting off going to get

retested after I had had my son till I was so bad I was shaking and

my heart was racing so fast. Something that is really strange is

that you can even have a rapid heart rate when overmedicated and

slightly hypo - very confusing but that is what has been going on

with me. From what I have learned so far - the docs are probably not

doing proper treatment/running proper tests if one is on as high a

dose as you are of the PTU for that long. I really suspect that you

may be being overmedicated and that is why you are feeling poorly but

only the proper labs can tell you for sure since symptoms can be

misleading.

> > > Hello! My name is Amy and I have had Grave's Disease for about

7

> > > years now. I've been on PTU for about 5 years and Inderal LA

for

> > > about the same time. I'm 28.

> > >

> > > I've had three kids, 4, 3 and 5 months. I recently have had a

lot

> > of

> > > problems with my hair falling out (I am afraid to brush it

anymore)

> > > and those auras I was reading about? What is that all about? I

> > > thought it was my imagination. I have a lot of problems with my

> > > muscles and joints, was wondering if that was all part of it

too.

> > > These are basically new symptoms, after having the baby. I

haven't

> > > been able to find a good Endocrinologist in my area, I'm trying

to

> > get

> > > an appointment with a 3rd doctor.

> > >

> > > I am afraid to have the Radioactive Iodine, does anyone here

have

> > the

> > > same fears or have been thru it without problems? I am getting

> > ready

> > > to have another blood test, and will share the results when I

get

> > them.

> > >

> > > Interesting stuff about acidic foods. I stay far away from

> > tomatoes,

> > > I thought I was allergic to them! I like orange juice, I

usually

> > get

> > > the low acid type, or should I stay away from that as well? I

> > drink a

> > > lot of milk and water, and caffiene? Forget it, I haven't had

any

> > > caffiene for over a year now!

> > >

> > > Thanks for having a support group for hyperthyroidism, and look

> > > forward to reading more about this really difficult to

understand

> > > disease.

> > >

> > > -Amy =)

[Guest guest]

Hi Amy,

Did you get a chance to check out the Graves board? I have been

thinking of you and hoping you get the help you need soon.

> > > Hello! My name is Amy and I have had Grave's Disease for about

7

> > > years now. I've been on PTU for about 5 years and Inderal LA

for

> > > about the same time. I'm 28.

> > >

> > > I've had three kids, 4, 3 and 5 months. I recently have had a

lot

> > of

> > > problems with my hair falling out (I am afraid to brush it

anymore)

> > > and those auras I was reading about? What is that all about? I

> > > thought it was my imagination. I have a lot of problems with my

> > > muscles and joints, was wondering if that was all part of it

too.

> > > These are basically new symptoms, after having the baby. I

haven't

> > > been able to find a good Endocrinologist in my area, I'm trying

to

> > get

> > > an appointment with a 3rd doctor.

> > >

> > > I am afraid to have the Radioactive Iodine, does anyone here

have

> > the

> > > same fears or have been thru it without problems? I am getting

> > ready

> > > to have another blood test, and will share the results when I

get

> > them.

> > >

> > > Interesting stuff about acidic foods. I stay far away from

> > tomatoes,

> > > I thought I was allergic to them! I like orange juice, I

usually

> > get

> > > the low acid type, or should I stay away from that as well? I

> > drink a

> > > lot of milk and water, and caffiene? Forget it, I haven't had

any

> > > caffiene for over a year now!

> > >

> > > Thanks for having a support group for hyperthyroidism, and look

> > > forward to reading more about this really difficult to

understand

> > > disease.

> > >

> > > -Amy =)

[Guest guest]

Hi, Kristi,

Glad to hear this group is helping; a year ago, this was such a

lifeline for me, to read others' stories and see that I was not alone.

Amazing how much that can help.

CBT, if performed by a trained professional is a miracle therapy in my

opinion. The dr. should be using ERP in conjunction with it, I hope

that's the case. My now 8 yr old daughter has shown signs of

OCD since she was 4 or 5, then last fall everything just exploded.

She was reduced to not being able to eat (table, chairs were always

too crooked or plate not lined up right), bathe (could never get dry

" enough " afterwards), go to the bathroom (felt she always had more to

eliminate) or wear clothes (everything " bothered " her). For a couple

weeks we stayed at home, and she missed some school as well.

The great news is that once she started with CBT and ERP, things

dramatically improved. She was on an extremely low dose of Zoloft as

well, subclinical really, but it may have had a placebo effect and

calmed her a bit just the same. By Christmastime we were able to

graduate and stop seeing her therapist as regularly. I won't say it

was easy, and there were many bad days, but they gradually became

farther and farther apart.

's bad thoughts started this summer and I was a bit freaked out

by them, even though I knew (from this list) that it was normal within

the OCD realm. When we talked to her dr. about it she said I needed

to ask whether this was an OCD thought or not. If she said

yes, then we make it as insignificant as possible, like shrug it off

as a silly OCD thought, and don't discuss it much. By giving it

little credibility, it pushes it into the background. We really

haven't been able to test this out, since the thoughts seemed to have

stopped (lasted a month maybe). Now we're on to other things - it's

exhausting keeping up with this disorder! (And I've been wondering

what if she says it ISN'T an OCD thought???)

Keep posting, it helps to let things out from time to time, you have

begun a journey that for me was the roughest road I've ever traveled.

You'll have setbacks, many crying jags, and times you think you just

can't do it anymore. But there's always a brighter day and you

realize you're only human, start again.

Good luck and never think you're alone.

nna.

NY

> I'm Kristi and I have a 10 yr old daughter w/OCD. I have been reading

> all of the new posts. I joined about 2-3 wks ago. started with

> hand washing and not eating (thinking she would choke) when she was 6.

> She was on Zoloft for about 3 yrs. As she got older it didn't work. She

> is now on Luvox and it was doing alot better, but all of a sudden, the

> OCD was back full force. We are now starting CBT and I am interested in

> what you guys have been through with this therapy and does it seem to

> work. At different times she has told me she has " bad thoughts " . But

> what got me really worried was the other night she had a gfriend spend

> the night and she woke me up at 2am crying, saying she was really

> having bad thoughts about hurting this girl while she was asleep. I

> stayed calm for 's sake (in my head I was terrified) I made

> sleep with me the rest of the night to calm her down. I was

> afraid to tell the dr because I didn't realize this was normal for OCD.

> I was actually afraid they would take her and put her somewhere. I

> just wanted to let you all know that reading these posts regarding the

> same thing has helped me tremendously, as I said I didn't know these

> really bad thoughts were normal. Please let me know what you all have

> experienced w/CBT. Thanks so much, Kristi

[Guest guest]

>

>

> 's bad thoughts started this summer and I was a bit freaked out

> by them, even though I knew (from this list) that it was normal within

> the OCD realm. When we talked to her dr. about it she said I needed

> to ask whether this was an OCD thought or not.

I have a question about this. This is the opposite of what I remember

from previous posts. I thought they were supposed to " think the bad

thoughts " so much that they get tired of them and they gradually go

away. I know my daughter would never know an OCD thought from an actual

one--when she is really " OCD " sick, she thinks they are very real. It

isn't a rational illness, I've found. If the pdoc asked her if they

were OCD thoughts, I think my daughter would panic that they may be

real. Make sense? Any thoughts?

Dina

[Guest guest]

Dina,

You're right, most people said to expose them to the thought so much

that it gets desensitized. Originally (pre-dr. appt) I had told

to think of the opposite of what she was thinking, since her

dr. had said before that with compulsions/rituals, she needed to do

the opposite of what OCD told her to do, to mess it up.

When I told the dr. how I handled it, she said there was nothing wrong

with what I did, but she recommended what I explained previously re:

giving it little significance. Now, I will say this, is VERY

astute as to what is OCD and what is not, and her therapist knows

this, so that may be the reason she went with that approach.

's therapist is Dr. Wagner, one of this list's advisors, so

maybe you should post a question to her about this, it is confusing!

nna.

NY

>

> >

> >

> > 's bad thoughts started this summer and I was a bit freaked out

> > by them, even though I knew (from this list) that it was normal within

> > the OCD realm. When we talked to her dr. about it she said I needed

> > to ask whether this was an OCD thought or not.

>

>

> I have a question about this. This is the opposite of what I remember

> from previous posts. I thought they were supposed to " think the bad

> thoughts " so much that they get tired of them and they gradually go

> away. I know my daughter would never know an OCD thought from an

actual

> one--when she is really " OCD " sick, she thinks they are very real. It

> isn't a rational illness, I've found. If the pdoc asked her if they

> were OCD thoughts, I think my daughter would panic that they may be

> real. Make sense? Any thoughts?

>

> Dina

[Guest guest]

On thoughts, this is just my opinion.

A " normal " person can have the same thoughts as someone with OCD

(violent, sexual, morbid...) but when the thought comes can shrug it

off, doesn't dwell on it, get obsessed or maybe can even play the

whole thing out in their mind but no anxiety/obsessing as with OCD

and just shrug it off and move on (maybe with a " yuck " or a shiver

for thinking it but can forget about it). There aren't all these

thoughts/fears with the person 24/7 or daily, whatever, causing

anxiety and/or worry about maybe being " real " or saying you're a

terrible person for having the thoughts.

I think for some with OCD, if they manage to get to a point they can

say " it's an OCD thought " and shrug it off and get on with daily

stuff, then that works for them. People usually get diagnosed with

OCD when it's become disruptive to their life and daily-living,

relationships, etc.

But as Dina said, therapy can also be the exposure or flooding where

you play it out again & again in your mind, don't try to repress it,

and keep doing this until eventually all the anxiety that might even

start at a " 10 " on the hierarchy lowers and eventually goes away.

All this done over time in therapy/treatment of course, or trying on

your own I guess if no therapist available to help with this.

I'm sure it's hard to know sometimes what is real, if the person

feels they are going insane or turning into some terrible type

person. But hopefully most can realize that if you, say, put the

knife/gun in their hand or their hands around your neck or gave them

their pet and said " be mean to it " or put matches/lighter in their

hand or the chance/reality to do whatever their thoughts were, they

know they would NOT do it.

For instance a child who has thoughts of killing their mom. Well,

with OCD, given the chance they wouldn't do it. But a child who has

other " issues " not OCD could very well get at least physical about

it. Working at mental health (as an office assistant) over the

years I occasionally see people being committed and also used to see

the kids before that unit moved to their own building. It was really

heartbreaking, some were so young. But none were for OCD. Some

really had done things like set fires, really did want to kill mom,

etc. Some had had a very rough life before all that too, and some

not a perfect life but not " that " bad but still had issues. (heck,

my kids' lives aren't perfect!)

OK I know I'm rambling. And I could still ramble on, LOL! Anyway,

just my 5-cents on the subject though I could probably go to 25-

cents!

[Guest guest]

Dear Kristi,

The CBT/ERP helped my son alot. It also helped me to learn how to best handle

the OCD and to prevent making it worse. Our therapist also has a monthly kids

support group which really helped my son to see other kids with the same

problem. This gave him some relief to see that it is a common problem. I have

read 4 books about helping kids with OCD and all recommended CBT/ERP as the best

treatment (with drugs also if needed). You need to give the therapy some time as

the first few visits seem to be warming up. I think it was about 5 visits before

I noticed much difference - maybe it depends on the age as my son was just 5 it

probably was a bit harder for him to understand but on the other hand his issues

were not long term - only started 2 months prior.

>

> From: " kristicw1 " <kristicw1@...>

> Date: 2005/08/31 Wed PM 12:06:10 EDT

>

> Subject: new here too

>

> I'm Kristi and I have a 10 yr old daughter w/OCD. I have been reading

> all of the new posts. I joined about 2-3 wks ago. started with

> hand washing and not eating (thinking she would choke) when she was 6.

> She was on Zoloft for about 3 yrs. As she got older it didn't work. She

> is now on Luvox and it was doing alot better, but all of a sudden, the

> OCD was back full force. We are now starting CBT and I am interested in

> what you guys have been through with this therapy and does it seem to

> work. At different times she has told me she has " bad thoughts " . But

> what got me really worried was the other night she had a gfriend spend

> the night and she woke me up at 2am crying, saying she was really

> having bad thoughts about hurting this girl while she was asleep. I

> stayed calm for 's sake (in my head I was terrified) I made

> sleep with me the rest of the night to calm her down. I was

> afraid to tell the dr because I didn't realize this was normal for OCD.

> I was actually afraid they would take her and put her somewhere. I

> just wanted to let you all know that reading these posts regarding the

> same thing has helped me tremendously, as I said I didn't know these

> really bad thoughts were normal. Please let me know what you all have

> experienced w/CBT. Thanks so much, Kristi

>

>

>

>

>

> Our list archives, bookmarks, files, and chat feature may be accessed at:

/ .

> Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D., (

http://www.lighthouse-press.com ). Our list moderators are Birkhan,

Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail

Pesses, and Kathy . Subscription issues or suggestions may be

addressed to Louis Harkins, list owner, at louisharkins@... ,

louisharkins@... , louisharkins@... .

>

>

>

[Guest guest]

Chris:

Just a quick note to tell you that I always read your posts - even when they're

dealing with issues my son (thank God) may not be grappling with at the moment.

If I see the '', I open it up even if I am in a hurry and on deadline

and really should be at work, 'cause there's always something insightful that

shines some light into this dark tunnel we're all travelling.

Thanks!

Now I REALLY gotta get to work...

kimz

>

> From: " " <@...>

> Date: 2005/08/31 Wed PM 09:06:39 EST

>

> Subject: Re: new here too

>

>

[Guest guest]

Thank you Kim, I guess between my own growing up issues & my 3 sons,

and then my job, I have thoughts on about everything (those posts I

ramble on in, LOL) and then of course OCD with (counting on

fingers...) 5 years ago (!)opened up a whole new world for me (and

us all). Including wonderful online groups like this, from which

I've learned so much and really did help me stay sane during that

awful first year of living with OCD, and since.

Come to think of it, I don't think we've yet had a parent here

committed or hospitalized from exhaustion due to their child's OCD

though I certainly worried about ME a bit that first year too!

We will ALL survive!

- and yes, our children WILL get better!

> Chris:

> Just a quick note to tell you that I always read your posts - even

when they're dealing with issues my son (thank God) may not be

grappling with at the moment. If I see the '', I open it

up even if I am in a hurry and on deadline and really should be at

work, 'cause there's always something insightful that shines some

light into this dark tunnel we're all travelling.

> Thanks!

> Now I REALLY gotta get to work...

> kimz

> >

> > From: " " <@h...>

> > Date: 2005/08/31 Wed PM 09:06:39 EST

> >

> > Subject: Re: new here too

> >

> >

>

>

>

[Guest guest]

Hi Kristi, I hate those horrid bad thoughts even though I know they are just

more OCD " stuff " . They have a way of terrifying the kids, and us, that

other types of OCD obsessions just don't. They are so repugnant. Death,

mutilation, murder, and perverted sexual themes are all " OCD normal " .

Therapy was very important, and worked very well for my child. The

challenge is to find a therapist who is expert in working with kids and who

will actually do ERP. For some reasons some therapists say they do ERP but

may not get around to it for a long while. In the first two or three

sessions you should see a hierarchy of fears, and your daughter should have

specific compulsions to work on in a specific way between sessions (ERP

" homework " ). You should see some lessening of symptoms by about session

five. If you don't, that's a red flag. As so many on this list can tell

you from personal experience, it's best to move on earlier rather than later

if you don't see improvement with a certain therapist rather quickly.

My daughter had gruesome and horrific thoughts at ages four, five, and six,

so I certainly sympathize with you. She obsessed about cutting out her eyes

with a sharp knife, and that she might have already bitten off a boy's

penis. As disturbing as the content of bad-thought obsessions are, they are

no harder to be rid of that any other OCD obsessions.

Take care,

Kathy R. in Indiana

----- Original Message -----

From: " kristicw1 " <kristicw1@...>

> I'm Kristi and I have a 10 yr old daughter w/OCD. I have been reading

> all of the new posts. I joined about 2-3 wks ago. started with

> hand washing and not eating (thinking she would choke) when she was 6.

> She was on Zoloft for about 3 yrs. As she got older it didn't work. She

> is now on Luvox and it was doing alot better, but all of a sudden, the

> OCD was back full force. We are now starting CBT and I am interested in

> what you guys have been through with this therapy and does it seem to

> work. At different times she has told me she has " bad thoughts " . But

> what got me really worried was the other night she had a gfriend spend

> the night and she woke me up at 2am crying, saying she was really

> having bad thoughts about hurting this girl while she was asleep. I

> stayed calm for 's sake (in my head I was terrified) I made

> sleep with me the rest of the night to calm her down. I was

> afraid to tell the dr because I didn't realize this was normal for OCD.

> I was actually afraid they would take her and put her somewhere. I

> just wanted to let you all know that reading these posts regarding the

> same thing has helped me tremendously, as I said I didn't know these

> really bad thoughts were normal. Please let me know what you all have

> experienced w/CBT. Thanks so much, Kristi

[Guest guest]

Hi Kristi, I hate those horrid bad thoughts even though I know they are just

more OCD " stuff " . They have a way of terrifying the kids, and us, that

other types of OCD obsessions just don't. They are so repugnant. Death,

mutilation, murder, and perverted sexual themes are all " OCD normal " .

Therapy was very important, and worked very well for my child. The

challenge is to find a therapist who is expert in working with kids and who

will actually do ERP. For some reasons some therapists say they do ERP but

may not get around to it for a long while. In the first two or three

sessions you should see a hierarchy of fears, and your daughter should have

specific compulsions to work on in a specific way between sessions (ERP

" homework " ). You should see some lessening of symptoms by about session

five. If you don't, that's a red flag. As so many on this list can tell

you from personal experience, it's best to move on earlier rather than later

if you don't see improvement with a certain therapist rather quickly.

My daughter had gruesome and horrific thoughts at ages four, five, and six,

so I certainly sympathize with you. She obsessed about cutting out her eyes

with a sharp knife, and that she might have already bitten off a boy's

penis. As disturbing as the content of bad-thought obsessions are, they are

no harder to be rid of that any other OCD obsessions.

Take care,

Kathy R. in Indiana

----- Original Message -----

From: " kristicw1 " <kristicw1@...>

> I'm Kristi and I have a 10 yr old daughter w/OCD. I have been reading

> all of the new posts. I joined about 2-3 wks ago. started with

> hand washing and not eating (thinking she would choke) when she was 6.

> She was on Zoloft for about 3 yrs. As she got older it didn't work. She

> is now on Luvox and it was doing alot better, but all of a sudden, the

> OCD was back full force. We are now starting CBT and I am interested in

> what you guys have been through with this therapy and does it seem to

> work. At different times she has told me she has " bad thoughts " . But

> what got me really worried was the other night she had a gfriend spend

> the night and she woke me up at 2am crying, saying she was really

> having bad thoughts about hurting this girl while she was asleep. I

> stayed calm for 's sake (in my head I was terrified) I made

> sleep with me the rest of the night to calm her down. I was

> afraid to tell the dr because I didn't realize this was normal for OCD.

> I was actually afraid they would take her and put her somewhere. I

> just wanted to let you all know that reading these posts regarding the

> same thing has helped me tremendously, as I said I didn't know these

> really bad thoughts were normal. Please let me know what you all have

> experienced w/CBT. Thanks so much, Kristi

[Guest guest]

>

> My daughter had gruesome and horrific thoughts at ages four, five, and

> six,

> so I certainly sympathize with you. She obsessed about cutting out

> her eyes

> with a sharp knife, and that she might have already bitten off a boy's

> penis. As disturbing as the content of bad-thought obsessions are,

> they are

> no harder to be rid of that any other OCD obsessions.

Kathy,

Do you mind sharing how you did CBT with thoughts only? My daughter had

obsessive thoughts about vomiting that were dibilitating, but she is

symptom-free with Prozac (2nd SSRI tried), so we never got around to the

therapy. She had very few compulsions that she got rid of within a week

with suggestions from the pdoc, but we never had to tackle the

thoughts. It isn't like rituals that you can do less or hold off on for

a minute, etc.

Thank you!

Dina