Re: It's here again!

[Guest guest]

Is she on meds? I can't remember last year what helped her get better.

Was it therapy with the Mayo Dr's?

I can totally relate to the timing issue! My DD's OCD first manifested

itself the same time we had our premature twins! About a week later,

she was full blown, not eating, anxious, wouldn't separate from me or go

to school. It was horrible! It was truly the worst time of my life.

It took us months to figure out what was going on, and she was finally

treated 7 mos. later in the hospital! All the while, I'm going back and

forth to the NICU, trying to breastfeed twins, then having them home and

being up and down all night, oy! But, we survived. And life was SO

MUCH BETTER once she got better. I was able to handle the twins just

fine. It was really HER that was my huge stressor and source of

anxiety. I know that you have so much going on right now, but if you

can try and help her, you will ultimately benefit, as will your whole

family. I know you know this, but I thought I'd throw it out there.

Hugs,

Dina

[Guest guest]

I just wanted you to know that my prayers are with you! It is scary

to see our kids go through this and even harder when you are dealing

with a new baby and post partum.

I don't know the answer for you.... but, could you give Mayo Clinic a

call and see if they have free services!... Or contact the county you

live in and see if they office free insurance for children... some do!

Again... i don't know the answer, just wanted to offer my support and

to say that this will pass... I know it may not seem like it now...

but it will!

Take care...

Vicki

>

> I haven't posted on here much since my now seven year old daughter

had

> been doing so well with her OCD. For the last two years she's dealt

> with OCD mostly with intrusive thoughts starting in the winter time

> through late winter early spring. Then it literally seems to

disappear.

>

> We just had a third child (a major unplanned suprise) last week. My

> daughter was doing so well and it seemed there was no sign of OCD.

Out

> of nowhere about two days ago it was like it reappeared out of

nowhere.

> My daughter started saying and doing things that were unmistakably

OCD.

>

> I am heartbroken and scared. I knew that it would show again but I

> guess deep down you hope it won't. The thing I can't believe it it's

> almost down to the exact day it started last year. I don't

understand

> what happens to her that it just comes and takes her over like this

> about a week before Christmas.

>

> I'm really worried because where we live there are no doctors around

> that have a clue about treating OCD or children with OCD. We had

taken

> her about 2 hours away last winter to Mayo Clinic where she saw a

good

> doctor and he really helped us all cope and get through it. The

thing

> is there's absolutely noway we can afford to go there this year. I

> don't know what we're going to do.

>

> What does a person do when they can't afford the help their child

> needs? It's so wrong that so many people have to go through this and

> millions of other health issues with no way to get help for their

> child. We were so relieved last year to have found a place that knew

> what they were doing. Now to know they are there but out of our

reach,

> it's heartbreaking and scary.

>

> I'm also going through a bad case of post partum depression and

that's

> not helping. I'm just so sad. I'd forgotten how when the OCD comes

my

> daughter's whole demeanor changes, like she's not herself anymore.

> Sometimes there will be moments when I see the real her but they are

> few and far between. And this is just the beginning.

>

> Does anyone have any advice for me? I just don't know how I'm going

to

> handle this. I'm so depressed and worried that I can't imagine how

I'm

> going to be able to help her get through this. I am currently on

meds

> for depression and they were raised last week in hopes of helping.

>

[Guest guest]

I'm not sure which Mayo clinic you're near, but if it's a northern

climate, any symptoms of SAD? Tomorrow is the shortest day of the

year. Could the lack of sunlight be contributing?

You might want to contact the doctor who treated your daughter last

year and see if he/she knows of any options for you - clinical trials,

financial assistance they may offer, or the doctor may be aware of

options you'd never thought of.

When my daughter was born, my son's reaction was so severe I thought

I'd never survive. I thought I'd ruined my family by having another

baby. How would we ever cope in a healthy manner? Hormones were

raging, no sleep, and my newborn wouldn't let anyone else hold her

except me. Then there was colic....

I know you feel helpless right now. Do what you can to let others help

you. Lean on friends and family and let them in. The worst thing you

can do is to try to be superhuman and then fail everyone in a complete

melt-down. One step at a time, one day at a time.

Every time you have a good moment, write it down on a post-it note and

stick it to your fridge, mirror, door... it can be a small thing - " I

got a nap and feel a little better " or " my daughter had a good moment

when... " . Then go read those notes when you start to feel horrible

again. When you're in the middle of a crisis, it's so easy to forget

that even bad days often have good moments. We'll let one bad thing

ruin a good day but we'll minimize a good thing and let the bad taint

everything. Save the post-its and keep reminding yourself that every

day will bring more notes and more steps out of the deep hole you feel

like you're in right now.

You're not alone.

>

> I haven't posted on here much since my now seven year old daughter had

> been doing so well with her OCD. For the last two years she's dealt

> with OCD mostly with intrusive thoughts starting in the winter time

> through late winter early spring. Then it literally seems to disappear.

>

>

[Guest guest]

So happy for you that the medication is allowing you to experience your

son with less severe OCD this winter. It is indeed a gift. Out from

under the grip of the OCD it is something to see more/all of who your

child is. I feel the same on this one.

Warmly,

Barb

In fact, with

> the help of medications, we are experiencing our son with no

> significant traces of OCD at the present time, for the first time in

> Winter in a long, long time. It has been wonderful to finally 'meet'

> my teenage son without the 'noise'. Turns out, he's a great kid. I

> would be disingenious to not admit my fears of its return, but I am

> completely enjoying each day as a gift and hoping for the best.

>

[Guest guest]

What can I say? You are all truly the greatest people ever! Every

single thing everyone of you has to say sticks with me and helps me

to get through another day.

I've been doing exactly what most of you have said and just been

taking it all one day at a time, more like one hour at a time. I

think I might have actually made it through yesterday without crying

so that in itself is a huge deal. I'm hoping the increase in my meds

is starting to make a difference for me. I have two days under my

belt alone with the three kids with my husband gone to work and I've

made it. I haven't worked this hard in years. I thought two kids was

hard, boy did I have no idea what I was in for!

I think our plan is going to be just what most of you have suggested

with sort of trying to just go with what helped last year. I swear

now though I think I blocked it out or something. It was such an

intense time period I don't know how I couldn't remember what we did.

I mean I didn't forget everything. It's just that there was so much

going on, so much to deal with and so many different things we tried.

It's hard to remember what worked with what problem.

I have to say I always wonder what medication could do for my

daughter. I think back all the way to my childhood and I wonder how

much better it would've been for me if I could've had medication as a

younger person. I always remember feeling depressed, always. I really

think I might've done so much better as a teenager especially if I

had been on meds. So yes, I really wonder if it's something that

would be helpful for her.

As far as what sort of symptoms she's showing she hasn't really

started doing anything major yet for me to share, it's just what I

recognize as sort of the start of it all if that makes sense. For

instance the other day we were in the drive through at mcdonalds and

her and her little brother were looking at a bird in the tree. DD

said something about " that bird is eating the snow. " Then a few

minutes later she says something like " I think maybe I might've just

said that about the bird. I don't think it really ate the snow. " Okay

not a big deal but this is the type of thing a month from now she

might be doing a zillion times a day. Then last night we were out and

she kept going to the bathroom to wipe. She told me she'd wiped a

bunch of times but just still felt wet. I asked her if she thought it

was her OCD. She said " yeah probably but I actually feel wet. "

Then the biggee for me is her personality. It's like she gets more

negative. Like a dark cloud over her you could say. When it all goes

away it's like that cloud is lifted. It gets really hard dealing with

her negativity. I try to tell myself it's not really her but it's

hard day in and day out. Especially now that she's getting older.

I will definately post more because the help you all offer is

incredible. I'm really trying to not worry about it all but as you

can tell it's hard. It's just barely the beginning of this all and I

already miss my daughter. She has today and a half day tomorrow of

school before two weeks of christmas vacation. By the time she goes

back things could be way worse. I so dread the school aspect of it

all. Again here I am worrying, maybe it will be okay.

[Guest guest]

>>Again here I am worrying, maybe it will be okay.

You're definitely not alone! I am not looking forward to what will happen

after school resumes! But, like you, I just don't know for sure. This

time I'm expecting it so, if OCD does take over again, I'm hoping to nip

it in the bud!

Beth (who sounds so brave . . . ha!)

[Guest guest]

You have a lot on your plate, I hope you are being gentle with yourself.

I find with Joei that the times when she has the real deep negativity are when

her anxiety level is high. This kind of helps me to depersonalize it, telling

myself it's not personal.  This helps me to deal with it better.

 

~~Kathy

 Courage is not living without fear.

Courage is being scared to death and doing the right thing anyway.

-Chae

________________________________

To:

Sent: Monday, December 22, 2008 7:50:30 AM

Subject: Re: It's here again!

What can I say? You are all truly the greatest people ever! Every

single thing everyone of you has to say sticks with me and helps me

to get through another day.

I've been doing exactly what most of you have said and just been

taking it all one day at a time, more like one hour at a time. I

think I might have actually made it through yesterday without crying

so that in itself is a huge deal. I'm hoping the increase in my meds

is starting to make a difference for me. I have two days under my

belt alone with the three kids with my husband gone to work and I've

made it. I haven't worked this hard in years. I thought two kids was

hard, boy did I have no idea what I was in for!

I think our plan is going to be just what most of you have suggested

with sort of trying to just go with what helped last year. I swear

now though I think I blocked it out or something. It was such an

intense time period I don't know how I couldn't remember what we did.

I mean I didn't forget everything. It's just that there was so much

going on, so much to deal with and so many different things we tried.

It's hard to remember what worked with what problem.

I have to say I always wonder what medication could do for my

daughter. I think back all the way to my childhood and I wonder how

much better it would've been for me if I could've had medication as a

younger person. I always remember feeling depressed, always. I really

think I might've done so much better as a teenager especially if I

had been on meds. So yes, I really wonder if it's something that

would be helpful for her.

As far as what sort of symptoms she's showing she hasn't really

started doing anything major yet for me to share, it's just what I

recognize as sort of the start of it all if that makes sense. For

instance the other day we were in the drive through at mcdonalds and

her and her little brother were looking at a bird in the tree. DD

said something about " that bird is eating the snow. " Then a few

minutes later she says something like " I think maybe I might've just

said that about the bird. I don't think it really ate the snow. " Okay

not a big deal but this is the type of thing a month from now she

might be doing a zillion times a day. Then last night we were out and

she kept going to the bathroom to wipe. She told me she'd wiped a

bunch of times but just still felt wet. I asked her if she thought it

was her OCD. She said " yeah probably but I actually feel wet. "

Then the biggee for me is her personality. It's like she gets more

negative. Like a dark cloud over her you could say. When it all goes

away it's like that cloud is lifted. It gets really hard dealing with

her negativity. I try to tell myself it's not really her but it's

hard day in and day out. Especially now that she's getting older.

I will definately post more because the help you all offer is

incredible. I'm really trying to not worry about it all but as you

can tell it's hard. It's just barely the beginning of this all and I

already miss my daughter. She has today and a half day tomorrow of

school before two weeks of christmas vacation. By the time she goes

back things could be way worse. I so dread the school aspect of it

all. Again here I am worrying, maybe it will be okay.

[Guest guest]

Barb, thanks for the info. I will definately try doing that. Last night

she was telling me that she's beein going to the bathroom a zillion

times lately. I was trying to figure out if she actually had a bladder

infection or if it's just the OCD. Things like that are tricky because

sometimes it's hard to know though I highly suspect it's the OCD.

In the case of her saying she has to go to the bathroom all the time do

you have any suggestions for that? With the wiping one we can deal with

that by just not letting her wipe again. But with going to the bathroom

I'm always nervous about that one because I don't know if she truly has

to go or not and when it's her OCD it's like she doesn't really know

either. Any suggestions?

[Guest guest]

Hi again,

We did not go through this with ours, just the wiping part of it, but

I have seen many write in about the bathroom " urge " , so hopefully

others chime in on this with their solutions.

If you think it is the OCD it usually is I find, where there's doubt

it's usually OCD.... So, expecting that this is the case, you might

suggest restricting the number of times going to the bathroom, maybe

logical times of day when one usually does " go " , and then trying to

resist the " extra " times, if you get what I mean.

Sometimes you can break down the issue logically, even thought the

OCD part is illogical and follow a plan. Even if she can't yet

resist, everything is in the attempt and understanding the concept.

So if she is not " sure " if she has to go, then that's a time to try

and resist, her bladdder will most certainly tell her when it " is "

time, so there's kind of a fail safe there built in.

But I do know what you mean about not wanting to restrict out of

concern for bladder infection, but as long as she still is going,

which isn't the problem, right? Now there's the rub, because then

the OCD can reverse it and decide she should not go.... But start

with where you are now and deal with that first. You don't need me

giving you things to think ahead and worry about now do you??? Just

pointing out the twists and turns the OCD likes to take with it, but

you just have to maintain the " we are going to try not to listen when

it's the OCD " stance.

Again, hopefully others come in with their ideas on this.

Hugs!

Barb

>

> Barb, thanks for the info. I will definately try doing that. Last

night

> she was telling me that she's beein going to the bathroom a

zillion

> times lately. I was trying to figure out if she actually had a

bladder

> infection or if it's just the OCD. Things like that are tricky

because

> sometimes it's hard to know though I highly suspect it's the OCD.

>

> In the case of her saying she has to go to the bathroom all the

time do

> you have any suggestions for that? With the wiping one we can deal

with

> that by just not letting her wipe again. But with going to the

bathroom

> I'm always nervous about that one because I don't know if she truly

has

> to go or not and when it's her OCD it's like she doesn't really

know

> either. Any suggestions?

>

[Guest guest]

Jami,

I don't have much knowledge of regular OCD, so this is with a grain of

salt. My son's PANDAS does cause a genuine thirst and a need to go

more often (and yes, I freak because you worry they're in the bathroom

doing some weird ritual).

You'll have to ask your daughter to make a judgment call on how much

is coming out on any given trip to the bathroom. If it isn't much, you

could suggest she wear a maxi or mini pad and then try to wait for a

certain period of time before she allows herself to go to the bathroom

again. That way, if it is a real urge and she ignores a genuine signal

for too long, there won't be any embarrassment from an accident,

especially in public.

Good luck!

> I'm always nervous about that one because I don't know if she truly has

> to go or not and when it's her OCD it's like she doesn't really know

> either. Any suggestions?

>