New to Group

February 12, 2004

Hello

I'm Sandy mom to Dennis 15yrs NT, Haley 32mths Dx ASD one month ago.

Haley had two seizures before she was one. Was on phenobarbital for a

year. Was progressing nicely until she hit 20mths. Her speech was

dropping off quickly. She has had 2 EEGs, an MRI, several blood test

and urine test to rule out any metabolic issues. She is in speech

therapy twice a week and was just approved for 1-on-1 therapy as

well. She is making great improvements gaining back some words,

getting new ones, and singing. She is a toy sorter, toe-walker, arm

flapping, lover. She will give the best hugs, on her conditions.

Thank you for being here, I am still very new at all of this. I'm

trying to understand Haley's world, it's difficult but fascinating

all at once.

Sandy Haley's Mom

February 13, 2004

I dont know, but nothing seems to be impossible with our kids

Pennie

Abby's Mom

September 4, 2008

Another thing, Debbie. I was in a similar situation. .$1500.00

deductible; $140.00 and appointments. We did what we could until we

ran out of money. Then, finally the therapist's office started taking

insurance. They didn't take ours however. But, I worked for a number

of months, proving to my insurance company that nobody they had

in-network was a specialist. I had to call many of their in-network

therapists and ask point blank questions about treatment for OCD, to

have them admit to me that they didn't know what I was talking about

(kinda funny now -lol, but not then). Anyway, many, numerous,

persistent phone calls later to my insurance company and they were

willing to treat our therapist as an in-network provider. Now we have

no deductible and only have a co-pay of $30.00. Big improvement. We

still have a long drive to reach him, but that's life. .And expected

when you live in a rural area. I figure we'd make that same drive for

a cancer specialist, if that was the case.

It was a lot of work, but worth the pay off.

Just a thought of something you might be able to do.

Best of luck.

BJ

>

> Hi, BJ, thanks for the welcome!

> I found our therapist at the OC foundation website, she is trained

in the ERP, and CBT. But I will definitely look into the workbooks,

because she is so far away and very expensive. We'll probably go to

her to get started, and then maybe work on it ourselves with only

occasional visits. That's not the way I'd like to do it, but our

finances just don't allow for twice weekly visits at $140 each. I

tnink we're going to try the meds, and maybe some hypnotherapy (we do

have one in town), and the fish oil, too. Lots of good ideas here!

> Debbie

>

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>

September 4, 2008

Hi Sherri, I think a lot of us can look back and see some early signs

regarding OCD. But, just my thoughts, a lot of people have OC

type " quirks " , the disorder is when things get out of control. And

there's no way to tell if that will ever happen.

My son with OCD is now 19. His " disorder " began back in 6th grade

but he had his " quirks " before then. I have 2 more sons (I'm a

single mom) and the rest of us have our " quirks " . My OCD son has

been severe at times. Oh we have had some " OCD free " times over the

years though; when he was on medication and then we had used a

supplement/alternative that helped for a while too.

I think OCD can cause inattention, distract them, preoccupy them...so

it could look like ADD. But a lot of kids have both problems. I

guess questioning your son a little bit when he seems " ADD " to find

out of the is obsessing/doing some OC ritual or thought might shed a

little light. There are parents here who have children with both,

maybe they can suggest ways to tell the difference.

I don't see how you could have been any more proactive than you

have. He's on medication, you read about OCD and ADD, you're

noticing signs....

Glad you found the group, it's been my best support through the years!

>

> Hi, my nine year old son was professionally diagnosed with OCD-

germs/washing 6 months ago. He is on Paxil, which was like a miracle

drug. We finally got our little boy back. I recognized " symptoms " of

the disoder at age 6, but brushed them off as just his personality

and unique characteristics. However, I now see those were early

September 13, 2008

Wow, , what a great website. I love the picture of your Ben.

He's such a handsome guy. ) Thanks for sharing it.

BJ

> >

> > Your sons sounds so much like my son who is now 9. Lots of the

> same behaviors, the middle finger one too. Ben is doing so much

> better than when he was first diagnosed. I think it is Pandas because

> it does seem to disappear completely and then reappear when ill or

> even exposed to strep. But, the dr is not on board with my diagnosis.

> >

> > Ben hasn't been on meds, we use supplements, inositol and omega-3s.

> And we use Kiddie Calmer from Natures Remedies. This group will

> really help. Ben learned lots of coping skills from his therapist and

> we don't even see her right now. She stopped taking our insurance, so

> that is a good thing. There are some great books for kids. Mr. Worry

> was the best for him and we got the workbook " What to do When Your

> Brain Gets Stuck " . That seemed to help some, though right now he

> doesn't even want to talk about his ocd. Before, it was all he could

> talk about. Things will get better.

> > Welcome to the group, it's a great place to share, vent and get

> info.

> > J

> > mom to Ben age 9

> > new to group

> >

> > Hello everyone, I am a mom of a 7 year old boy who has OCD. We

> have

> > been seeing a social worker trained in CBT since May. He does

> seem

> > to be doing much better right now, as he is very busy with school

> and

> > sports. My husband and I are trying to avoid putting him on

> > medication for now.

> >

> > There were so many things that I now realize should have been red

> > flags to me when he was younger, however he is my first born and

> I

> > had no idea of what was " normal " . I have a 4 year old daughter

> and

> > now I see how things should have been for him. He always was very

> > clean, I never needed to tell him to wash his hands after he used

> the

> > bathroom, from the time he was potty trained. He was frightened

> by

> > so many things. He worried about everything and wasn't just

> having

> > fun like most of the other children. When he was 4 he would

> > constantly tell me that he had put his fingers in his mouth and

> ask

> > me if it was okay. He wouldn't touch anything that was pink

> > or " girly " , he couldn't eat or watch T.V. in room that had

> anything

> > pink in it.

> >

> > It all came to a head when we went to Disney in April right

> before

> > his 7th birthday. Right before we left, another child in his

> class

> > had told him that his middle finger was a " bad finger " . He became

> > obsessed with not putting up his middle finger. He walked around

> > clenching his fingers. All day he would, as we were walking

> through

> > the parks, say " Mom, I put up the bad finger " even though he

> hadn't.

> > He was also obsessed with germs. We went trough bottles of

> Purell,

> > and he washed constantly. He didn't enjoy the trip at all, he was

> > miserable, my husband and I were miserable, it was awful.

> >

September 13, 2008

I think this is a VERY important point. Â I don't think there is a therapist out

there anymore who doesn't say that they use CBT. Â I think they just call any

therapy this. Â It is very important that they do ERP. Â My daughter left her

therapist's office last night with a sheet of paper in which they were mapping

out her fears in the degree of strength that they are for her and slowly they

will conquer them through exposure. Â I am thrilled to have finally found a

therapist who is helping her to actively conquer the stranglehold OCD has on her

life.

Re: new to group

Hi. Welcome.

We also look back and see many things that were OCD, but we had no

idea at the time what we were dealing with, with our son.

You mentioned that the social worker is using CBT. Is he/she also

using ERP? That's is so important when treating OCD. Our son has

improved tremendously, using the correct type of therapy.

Hopefully, the therapy will help your son enough that he will not need

medication. That is the case for some.

Glad you are here.

BJ

>

> Hello everyone, I am a mom of a 7 year old bo

y who has OCD. We have

> been seeing a social worker trained in CBT since May. He does seem

> to be doing much better right now, as he is very busy with school and

> sports. My husband and I are trying to avoid putting him on

> medication for now.

>

> There were so many things that I now realize should have been red

> flags to me when he was younger, however he is my first born and I

> had no idea of what was " normal " . I have a 4 year old daughter and

> now I see how things should have been for him. He always was very

> clean, I never needed to tell him to wash his hands after he used the

> bathroom, from the time he was potty trained. He was frightened by

> so many things. He worried about everything and wasn't just having

> fun like most of the other children. When he was 4 he would

> constantly tell me that he had put his fingers in his mouth and ask

> me if it was okay. He wouldn't touch anything that was pink

> or " girly " , he couldn't eat or watch T.V. in room that had anything

> pink in it.

>

> It all came to a head when we went to Disney in April right before

> his 7th birthday. Right before we left, another child in his class

> had told him that his middle finger was a " bad finger " . He became

> obsessed with not putting up his middle finger. He walked around

> clenching his fingers. All

day he would, as we were walking through

> the parks, say " Mom, I put up the bad finger " even though he hadn't.

> He was also obsessed with germs. We went trough bottles of Purell,

> and he washed constantly. He didn't enjoy the trip at all, he was

> miserable, my husband and I were miserable, it was awful.

>

December 4, 2008

Hi Shana, welcome! I saw where Kathy already recommended those great

books on OCD. You might also look for some children's books about

OCD that your son might benefit from and even enjoy. Finding an

experienced therapist can be difficult. Have you looked at the OCD

Foundation website, they do have a place there to search to see if

any are listed there in your area. And that's just if they opt to

have their names listed there, don't give up on looking for one if

their site doesn't show someone close by.

You mentioned the therapist, is he on any medication?

I know what you mean about the brain " never shuts off " .

So is your son working on bossing back any of his OCD? We never

could find a therapist when my son (now 19) had his OCD begin in 6th

grade. Took what I learned about therapy from reading and from this

great group and we - slowly - worked on things on our own. Would

probably have gone faster and easier, somewhat, if we could have

found an experienced therapist. We would pick 1, 2 or 3 things to

work on at a time and just ignore the " other " OC behaviors.

For now I guess you can quit buying clothes for him. My OCD son

isn't too bad about clothing but insists on only certain type t-

shirts, will not wear long sleeves and used to be very picky about

his jeans (has a few more styles now). Now another non-OCD son had

some sensory issues with clothes, shoes, when really young and some

when older. So I was limited in what he wore, couldn't find anything

new for him to wear. Something about the material. Some materials

gave him the " shivers " , couldn't stand the feel of them. Older, worn-

in clothes were better (hand-me-downs), sock seams bothered him,

etc. So I had the " won't wear what I buy " problem too and quit

buying. He just had a limited wardrobe. Finally it worked out that

if he wore undershirts, he could wear the new shirts. Still has to

have an undershirt on today. When he was young, his shoes just

couldn't seem to get tied tight enough, would cry over it, other

things that eventually passed. --- With my OCD son, I don't know if

things like his not wearing long sleeves is an OCD problem or maybe a

sensory thing or maybe he doesn't like how they look on him, who

knows, he won't state a reason.

When his OCD began he had a lot of " touching " type compulsions, a few

rituals (like a thing he did with socks when getting dressed) and

repeated some things, got stuck in some doorways (needed a push

through), rarely he might stop when walking and go back to re-do...at

first it seemed like his OCD was constantly changing but eventually

settled down some where at least new things weren't popping up weekly.

Once he had some success on conquering a couple behaviors, seemed

like others were faster/easier to work on and some disappeared; but,

yes, a few stayed for the long-term but still things were better. It

really was 24/7 OCD for a long while though.

Well I'm glad you found our group, it's been my best support thru the

years!

single mom, 3 sons

, 19, with OCD, dysgraphia and Aspergers

>

> Hello everyone. My name is Shana. I have four kids and my oldest

who is

> 9 has OCD. His rituals are making the entire family crazy and I

just

> want to help him. It seems his OCD has gotten better over the last

December 4, 2008

Hi, Shana -- I'm Beth and I also have a 9-year-old with OCD but hers is quite

mild compared to your son's. She has some germ issues, feelings of guilt, a lot

of mental gymnastics (tongue twisters, saying words backwards, etc). We were

blissfully ignorant of the mental stuff until just recently although her

psychologist had told us he suspected she had a lot going on in that brain of

hers!

One thing that helped us immensely was a workbook called " What to do When Your

Brain Gets Stuck " -- it is about $10 from Amazon and my daughter saw herself in

it immediately. Last January she got to a point where her OCD was totally

out-of-control and she was very motivated to get past the anxiety. This

workbook helped her so much.

The other thing that helped us a lot was spending time with a therapist who

basically taught us how to do ERP (exposure / response prevention) with her

ourselves. He observed us interacting as a family and suggested we try doing

our own " therapy " with her. He taught us how to gradually expose her to

anxiety-inducing situations (sit near the boy she was afraid of) and then ask

her to delay or prevent the response (washing her hands or changing her

clothes). She was able to learn that the anxious feeling would go away whether

she engaged in the OCD behavior or not.

For her this worked but, again, her OCD is mild. She certainly still has OCD

and we are reminded of this almost daily again (ugh!). For quite a while,

though, her OCD was so mild that it didn't affect our lives much at all. It was

a nice break! Hopefully we will get past the latest issues quickly . . . but

I'm wondering myself if it's time to have a chat with her therapist (she hasn't

had to see him since April).

Beth

new to group

Hello everyone. My name is Shana. I have four kids and my oldest who is

9 has OCD. His rituals are making the entire family crazy and I just

want to help him. It seems his OCD has gotten better over the last

year, but it still interfers with life. His rituals include: going in

and out of doors the exact same way everytime, going around people in a

certain order, only wearing certain socks and even those sometimes bug

him. He's picky about his shoes. And he will only wear athletic pants

with certain pockets. The clothes thing is driving me crazy because it

seems like everything I buy for him he won't wear. It also makes him

late for school because he has a hard time getting dressed in the

morning. He hoards things, has number rituals, good and bad numbers. It

seems like his brain never shuts off. I'm sure there are many more that

I can't think of right now. My husband and I first just thought he was

being defiant until we realized that something else was going on. He

was seeing a mental health specialist but she really wasn't helping so

we stopped going. I know he needs some kind of help before he goes

crazy or we do. Any advice would be appreciated.

December 4, 2008

Hi Shana and welcome! You will find many here who understand the

challenges of living with this crazy disorder. Some/many of us have

been around the bend and back again...

It looks like and BJ and others have filled you in on the

appropriate treatment and books and such. I just wanted to add my

welcome to the group. As BJ says throw out your questions and concerns

lots of suggestions and support here.

Warmly,

Barb

December 7, 2008

Hi Shana,

I wanted to welcome you to the group. I'm still lacking the wisdom of some

of the people on the list, but wanted to greet you anyway! We've only had his

diagnosis since October of this year. TS, OCD, ADD.

In a message dated 12/4/2008 8:44:54 P.M. Central Standard Time,

smccorgary@... writes: