Re: Another New OCD mom

[Guest guest]

Hi Cheryl! Welcome to this group! I just joined around January or

so (and some others) but this group has been the best! This was the

first group I had joined and I was entirely new to message boards,

etc.

I can identify some of my son 's OCD behaviors with yours.

is 12 and a twin. was diagnosed last Sept. The OCD

seemed to appear suddenly, tho I knew he had a few " little "

compulsions before that. In September it just became severe, at

least to us.

has to have the " just right " feeling regarding touch. His

clothes aren't a problem, but his body is. It has to feel right

rather it's his hand, foot, elbow, etc. Some things have to be done

a certain number of times. The way he sort of " jumps " on the bed has

to feel right or he'll keep trying again and again. Things like

that. He'll get stuck looking at things - clocks, fan, pictures, etc.

I don't have him on any meds yet. We were trying Inositol (B

vitamin) first. I don't know if it has helped, I think it has some

but we're still dealing with the OCD. So I want to try meds and he

is refusing to. So I haven't yet bothered getting a prescription.

He won't talk about his OCD either. He hates it when I do.

is the messy eater, clumsy, etc. He's always been this way which I

put down to motor skills delay as he was/is delayed there. But he

doesn't even TRY to be neat.

His twin brother has sensory issues with clothes and this has

been somewhat of a problem. Some materials really bother him.

I do remember my older son Randall (now 16) having problems with his

pants and the way they would feel. I'd have to buy them what I

thought were a little too large as he always complained about the way

they felt in the bottom, etc. I just thought, well, you know I

haven't actually " seen him " since he was old enough to take his own

bath....maybe that's the problem, so let him pick out his pants even

if the crotch of the pants is sort of hanging down....he can wear a

belt....

Oh well. Good luck with your diagnosis. And you'll find out about

all kinds of OCD symptoms here. Welcome!!!

in N.C.

> Hi everyone

> I have been listening in for about a week and I'm ready to

introduce

> our family.

[Guest guest]

Since we live in a rural area of eastern Ohio, we're prepared to

drive to one of the cities for help if we don't get anywhere with the

pediatrician. If there is anyone here who has found a good doctor or

therapist in the Pittsburgh, PA or Columbus,

> Akron/Canton OH or Wheeling, WV areas, we'd love to hear from you!

Cheryl:

I am in NE Ohio, so my experience with therapists etc has been in the

Cleveland area. However, if you write to the oc foundation, you can

get a list of therapists in Ohio and West Virginia. It does sound

like your son has ocd tendencies. Most of us can relate to the

clothing sensitivities, and other " just so " obsessions. Many of our

kids do have comorbid AHDH, TS, or other assorted alphabet soup as

well. I'm not sure I would rely on a pediatrician to make an accurate

diagnosis, however. A child psychiatrist or pediatric neurologist is

more likely to be familiar with ocd and its symptoms and treatment.

The gold standard for treatment is CBT and ERP -- I'm sure Kathy H and

will have more to say on that. As far as the insensitive

teacher goes, I would speak with the school principal and let her know

of your concerns. I would stress the need for confidentiality, and

that this teacher broke your trust. Some parents choose to keep their

child's diagnosis from the school; for others, the school has to be

told. My son's OCD was/is so severe that there was no way to keep it

hidden from them. It impacts his school life in a very BIG way.

Fortunately, I have been able to cultivate a partnership with the

schools he has attended, and they have been open to learning about ocd

and its ramifications.

I think you'll find that we have a very supportive group here, and

each of our moderators has personal and professional experience to

share.

Jule (NE of Cleveland)

[Guest guest]

& Jule,

Thanks for your response to my post yesterday. I want to comment on a

few things you said.

my son's problem with his pants is the opposite- rather than

buying ones too big and letting them sag (I wish it were that simple!),

he wants them to fit exact. It's a nightmare buying clothing for him

because even though I buy " slims " to fit his skinny little frame, he can

still decide at random that some don't fit right. If he wears them one

time and decides they don't fit, it was a waste of money because he will

never wear them again- at least not without a meltdown. I do sew, but

altering clothing is beyond my league. He was wearing a belt so tight, in

order to keep all his clothing (shirt tail, pants, underwear) pinched

into the just right position that he had literal marks around his waist

when he undresses, but this week he has decided it's easier to go without

a belt so he doesn't have to fiddle with it all the time. Do we let him

do that or is that just reinforcing his fears?

He's a trial to take along shopping, with his obsession over buying

things, but maybe if I let him try on clothing before we buy? Or is that

again reinforcing his feelings?

Jule, I forgot to mention Cleveland in my post so if you have a real

good therapist you would recommend, we are open to any/all suggestions at

this point. We have less than 2 hours to Cleveland. I did apply for the

OCF list of specialists and am anxiously awaiting it.

Like you said, I don't think I can rely on the pediatrician for much

help. Would you suggest skipping that step all together? I guess I was

figuring a specialist type doctor wouldn't be interested in seeing my son

until he's been to the pediatrician for a check-up. He hasn't had even a

simple check-up for several years because he panics in a doctors office

and won't let anyone near him. Can I even get an appointment with a

specialist without a referral from our pediatrician? Maybe I'm exposing

myself as a country hick, but we've been given that runaround before with

other medical needs.

Just a clarification on the teacher breaking our trust. I'm sure she

is aware of his compulsions, so it's not like we can hide OCD from her. I

know he carries out his compulsions at school because I visited his

classroom to check that very thing one day when I was second guessing my

parenting skills- like " is our home so stressful he carries out these

compulsions at home but he's fine at school? " The reason the teacher

breaking our trust was such a big deal is because we were fresh into

realizing something is wrong with out son- if what we felt at that point

was normal, we were in shock, denial and didn't want anyone to know until

we had gotten used to the idea ourselves. Ah, but it's so much harder to

regain trust once it's lost.

Cheryl in OH

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[Guest guest]

Hi Cheryl and welcome. I've been a member of this board for about two

years, and in that time I can recall no ugliness or unpleasantness of any

sort. This group of parents I have found to be very supportive, respectful

and helpful, and many of us are or were new to the Internet when we first

found this group. I am sorry you had a bad experience on another board. I

know I quit a board because the posts seemed mostly to consist of people

being angry and upset with each other.

You wrote:

> I commend everyone for the support I have seen given in the short time

> I have been on board. Unlike many of you, I have an excellent support

> group right here in my neighborhood, in the form of a few friends

> including a nurse. So I have joined this list not so much for the

> support, but more for the medical advice.

You are very lucky to have a real-world support group! I was a member of

one for about a year until it fell apart, and it was very helpful for me.

This list does have an advisor who is a MD, Dr. Dan Geller. If you want to

address a specific question to him, just put his name in the subject line of

your post and the list owner, Louis Harkins will forward it to the doctor.

> We are just starting the OCD journey- no diagnosis yet. The OCDer in

> our household is our oldest son, , age 7, grade 2. We are not aware

> of any mental health problems in either side of the family so this is all

> very new, not only to us, but to our family (my in-laws are the type that

> believe our son could wind up brain damaged for life if we put him on

> these kinds of medications, sigh- no support there) We have a visit

> scheduled with the pediatrician on May 16. I'm not very confident that

> we'll get much help from him.

Many peds aren't familiar with OCD. Ours wasn't, but helpfully told me so

off the top. However, since my daughter's obsessions often involved

physical complaints, it was good to have her on board in the beginning to

help sort OCD symptoms from actual bladder and ear infections. OTOH any

doctor including a pediatrician can prescribe SSRIs, the type of meds that

are used to treat OCD.

> Like many of you, we now believe probably had OCD since birth.

> We have been second guessing our parenting skills for the last several

> years as he grew older physically, but still acts like a 2 year old in

> some situations. We were beating ourselves up as parents- if we'd just be

> 100% consistent with him we could train this behavior out of him, etc,

> etc. What a relief to discover this isn't our fault, or his!

(((hugs))) this is tough, and you should be prepared in case during the

diagnosis/treatment phase you run into mh providers who want to blame

's behaviors on family problems. OCD is a no-fault physical brain

disorder but there are still doctors and therapists around who treat the

symptoms from a psychodynamic perspective.

> He is the " just right " type. His worst compulsions involve his

> clothing- underwear, jeans, shirt tail & belt all have to feel just right

> simultaneously, which causes constant arranging clothing (let me tell you

> this gets embarrassing when he is standing up on stage at a school

> function doing these maneuvers that appear to be clutching his crotch

> because some piece of clothing doesn't feel right to him!)

Many of us have noticed these clothing problems in our kids. They can be

obsessive or compulsive, or sensory problems. My daughter's clothing

problems slowly vanished on an SSRI and with E & RP therapy. Some kids have

had good success with an occupational therapist's approach to sensory

integration.

> He is very afraid of all doctor's offices

> so if anyone has any tips on how to get him to cooperate with all these

> doctor visits we're anticipating, we'd be grateful!)

My daughter has had blood work repeatedly when her symptoms would worsen.

Her doctor wanted to confirm a PANDAS or infection-related OCD diagnosis. I

used bribes and rewards, and insisted my husband come along for two-on-one

if it became necessary.

> I read somewhere that children with OCD are often hyper-sensitive. Is

> this the same thing as SID?

The symptoms are the same, and it may well be. Kids with OCD are likely to

have other disorders, SID among them. A child can have some sensory

differences or problems without having these severely enough to meet the

diagnostic criteria of SID. According to my daughter's psych, it's common

for kids to have a primary diagnosis such as OCD, with " touches " of

Tourettes, ADHD, or sensory integrative disorder.

My son definitely has this, in my opinion; he

> is hyper-sensitive to touch, hence his obsession with things feeling

> right and anxiety over pain. I was amazed to read the posts about clumsy

> children who are very messy when they eat. That describes our son very

> well, but I never connected his awful table manners to OCD before.

My daughter has some problems with her hands and feet falling asleep,

cramping, etc. and this was mentioned on the list not too long ago.

Apparently it's not an unusual thing for OCD kids. I'm not sure if this is

part of OCD itself, or a medication side effect. Her eating messiness and

general clumsiness and activated behavior began abruptly with the OCD and

perhaps is related to the hand problem.

> We really don't know how " bad off " he is at this point because he

> refuses to talk about his o-c's. We can see his compulsions, but we can't

> get inside his head to know what obsessions he's thinking. It doesn't

> seem like he tries to hide his compulsions, rather he's oblivious that

> he's different from his peers. He appears to be in denial. When we were

> having a bad morning last week I mentioned we're going to take him to the

> doctor and he made need medicine to get him past this, he became very

> upset. He claims his teacher told him he may not take medicine unless

> he's sick.

My daughter is 7 and I've had a similar problem coming out of the Drug

Awareness program at school. Perhaps this is where your son gets the idea

that he can't take medicine unless he's physically sick. During the process

of evaluation and diagnosis, the doctor will probably explain OCD in a way

your child can understand, and how medicine can help if that's prescribed.

Again, welcome Cheryl,

Kathy R. in Indiana

[Guest guest]

Cheryl,

Just my two cents. If you aren't concerned about his teacher being

aware of the diagnosis, have her talk to your son about the difference

between illegal drugs and legal drugs. If my children are confused

about something with regard to school, I never hesitate to have the

teacher talk to them to clear things up. My daughter once

told me, on the way home from school, that she was scared when her

third grade teacher sent her out to work with me in the bea when I

helped out, because " you only work out in the bea if you're a poor

student. " Well, her teacher had added her to my group at the last

minute only because I was the volunteer that day and I told her that.

When I got home, I left a message for the teacher - this same

wonderful teacher who wanted to know how to help an OCD child in her

class and yet another child who is petrified of bees - telling her

what had said and that maybe some of the other kids had this

perception, too. The next day, I saw her teacher and she thanked me

for my message. She said she'd tried hard to prevent the kids from

getting that impression and she talked to the kids again about how

going out to the bea to work with a parent volunteer *does not* mean

you're doing poorly in school. Another time, there was a mix-up about

baked goods for 's class. He and I hard worked hard to make

these oreo treats into the shape of hearts, special for this classroom

party, not realizing that there'd been a message my husband took that

said they alredy had enough sweets. Well, I delivered the treats and

assumed they'd been presented. On the way home with both kids in the

car, my son told me he'd waited for those treats all through class and

they never showed up. And his sister told me that *her* class

received the treats. It turned out that the teacher and some of the

parent helpers arbitrarily decided that the kids would be too sugared

up if they handed out 's treats when they already had so many

sweets, so they sent them over to 's sister's classroom, never

served them in 's class! This was like a double insult to

with the sibling rivalry he has with his sister! The teacher

had planned to discuss it with , but she somehow didn't get

around to it, so he was upset about it. I sent a note in about it and

she wrote back at the end of the day to say she sat down with

and apologized to him. It seemd to help some, she said, but he was

still quite upset. The thing with kids - and, I think, mostly with

OCD kids? - is that they can get upset about something and then get

involved in something else for awhile that distracts them, but the

anger and frustration over the event is *not* forgotten. Later on, it

comes up again and they are just as upset about it as they were the

first time around. This is how I liken 's OCD with my OCD and

the worry cycle I experience. I have a hard time resolving the

problem. OCD people are always looking for the " right answer " and

there just isn't one to be had. So I think this must be what

is experiencing with the anger/frustration. He just can't get that

" right " feeling after something like that, so he keeps taking out the

problem and re-experiencing the feelings related to it. (Does this

make sense, I hope?!) He just has trouble moving on and putting it

behind him for good. He keeps score, in a sense. And I figure that

just *has* to affect his self-esteem.

But don't be afraid to have the teacher explain anything to your child

that wasn't clear to him the first time around. From my experience,

they don't mind at all and they appreciate the feedback they get from

parents.

-Jean

> > I commend everyone for the support I have seen given in the

short time

> > I have been on board. Unlike many of you, I have an excellent

support

> > group right here in my neighborhood, in the form of a few friends

> > including a nurse. So I have joined this list not so much for the

> > support, but more for the medical advice.

>

> You are very lucky to have a real-world support group! I was a

member of

> one for about a year until it fell apart, and it was very helpful

for me.

> This list does have an advisor who is a MD, Dr. Dan Geller. If you

want to

> address a specific question to him, just put his name in the subject

line of

> your post and the list owner, Louis Harkins will forward it to the

doctor.

>

> > We are just starting the OCD journey- no diagnosis yet. The

OCDer in

> > our household is our oldest son, , age 7, grade 2. We are

not aware

> > of any mental health problems in either side of the family so this

is all

> > very new, not only to us, but to our family (my in-laws are the

type that

> > believe our son could wind up brain damaged for life if we put him

on

> > these kinds of medications, sigh- no support there) We have a

visit

> > scheduled with the pediatrician on May 16. I'm not very confident

that

> > we'll get much help from him.

>

> Many peds aren't familiar with OCD. Ours wasn't, but helpfully told

me so

> off the top. However, since my daughter's obsessions often involved

> physical complaints, it was good to have her on board in the

beginning to

> help sort OCD symptoms from actual bladder and ear infections. OTOH

any

> doctor including a pediatrician can prescribe SSRIs, the type of

meds that

> are used to treat OCD.

>

> > Like many of you, we now believe probably had OCD since

birth.

> > We have been second guessing our parenting skills for the last

several

> > years as he grew older physically, but still acts like a 2 year

old in

> > some situations. We were beating ourselves up as parents- if we'd

just be

> > 100% consistent with him we could train this behavior out of him,

etc,

> > etc. What a relief to discover this isn't our fault, or his!

>

> (((hugs))) this is tough, and you should be prepared in case during

the

> diagnosis/treatment phase you run into mh providers who want to

blame

> 's behaviors on family problems. OCD is a no-fault physical

brain

> disorder but there are still doctors and therapists around who treat

the

> symptoms from a psychodynamic perspective.

>

> > He is the " just right " type. His worst compulsions involve his

> > clothing- underwear, jeans, shirt tail & belt all have to feel

just right

> > simultaneously, which causes constant arranging clothing (let me

tell you

> > this gets embarrassing when he is standing up on stage at a school

> > function doing these maneuvers that appear to be clutching his

crotch

> > because some piece of clothing doesn't feel right to him!)

>

> Many of us have noticed these clothing problems in our kids. They

can be

> obsessive or compulsive, or sensory problems. My daughter's

clothing

> problems slowly vanished on an SSRI and with E & RP therapy. Some

kids have

> had good success with an occupational therapist's approach to

sensory

> integration.

>

> > He is very afraid of all doctor's offices

> > so if anyone has any tips on how to get him to cooperate with all

these

> > doctor visits we're anticipating, we'd be grateful!)

>

> My daughter has had blood work repeatedly when her symptoms would

worsen.

> Her doctor wanted to confirm a PANDAS or infection-related OCD

diagnosis. I

> used bribes and rewards, and insisted my husband come along for

two-on-one

> if it became necessary.

>

> > I read somewhere that children with OCD are often

hyper-sensitive. Is

> > this the same thing as SID?

>

> The symptoms are the same, and it may well be. Kids with OCD are

likely to

> have other disorders, SID among them. A child can have some sensory

> differences or problems without having these severely enough to meet

the

> diagnostic criteria of SID. According to my daughter's psych, it's

common

> for kids to have a primary diagnosis such as OCD, with " touches " of

> Tourettes, ADHD, or sensory integrative disorder.

>

> My son definitely has this, in my opinion; he

> > is hyper-sensitive to touch, hence his obsession with things

feeling

> > right and anxiety over pain. I was amazed to read the posts about

clumsy

> > children who are very messy when they eat. That describes our son

very

> > well, but I never connected his awful table manners to OCD before.

>

> My daughter has some problems with her hands and feet falling

asleep,

> cramping, etc. and this was mentioned on the list not too long ago.

> Apparently it's not an unusual thing for OCD kids. I'm not sure if

this is

> part of OCD itself, or a medication side effect. Her eating

messiness and

> general clumsiness and activated behavior began abruptly with the

OCD and

> perhaps is related to the hand problem.

>

> > We really don't know how " bad off " he is at this point because

he

> > refuses to talk about his o-c's. We can see his compulsions, but

we can't

> > get inside his head to know what obsessions he's thinking. It

doesn't

> > seem like he tries to hide his compulsions, rather he's oblivious

that

> > he's different from his peers. He appears to be in denial. When we

were

> > having a bad morning last week I mentioned we're going to take him

to the

> > doctor and he made need medicine to get him past this, he became

very

> > upset. He claims his teacher told him he may not take medicine

unless

> > he's sick.

>

> My daughter is 7 and I've had a similar problem coming out of the

Drug

> Awareness program at school. Perhaps this is where your son gets

the idea

> that he can't take medicine unless he's physically sick. During the

process

> of evaluation and diagnosis, the doctor will probably explain OCD in

a way

> your child can understand, and how medicine can help if that's

prescribed.

>

> Again, welcome Cheryl,

> Kathy R. in Indiana

[Guest guest]

Kathy,

You wrote:

> Many of us have noticed these clothing problems in our kids. They can

be

> obsessive or compulsive, or sensory problems. Some kids have

> had good success with an occupational therapist's approach to sensory

> integration.

>

Is there a good book or other source of information on SID? I want to

be as informed as possible about what I think my son has before I going

to any appointments. To get a child into OT, does one need to ask for it

or does the doctor/therapist usually " prescribe " that?

Cheryl

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[Guest guest]

You wrote:

> If my children are confused

> about something with regard to school, I never hesitate to have the

> teacher talk to them to clear things up.

>

Thanks so much for that! Amazing how someone else can cut through the fog

and clarify an answer to my situation that seemed like such a big deal

before... Does that make sense? Like we get hung up on the petty things

because we're dealing with all these big issues (OCD) so everything

becomes BIG!

> The thing with kids - and, I think, mostly with

> OCD kids? - is that they can get upset about something and then get

> involved in something else for awhile that distracts them, but the

> anger and frustration over the event is *not* forgotten. Later on, it

> comes up again and they are just as upset about it as they were the

> first time around. ... OCD people are always looking for the " right

answer " and

> there just isn't one to be had. So I think this must be what

> is experiencing with the anger/frustration. He just can't get that

> " right " feeling after something like that, so he keeps taking out the

> problem and re-experiencing the feelings related to it. (Does this

> make sense, I hope?!) He just has trouble moving on and putting it

> behind him for good. He keeps score, in a sense. And I figure that

> just *has* to affect his self-esteem.

>

YES! That makes perfect sense to me. I appreciate insight like this

because we, as non-OCD parents, don't know how this feels and since our

son refuses to talk about what he feels/thinks inside, we feel so

helpless in knowing how to explain what's happening to him. At this point

he's so sure what he's doing is necessary and doesn't know anything about

bossing back those feelings.

Thanks again! Cheryl

________________________________________________________________

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Join Juno today! For your FREE software, visit:

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[Guest guest]

Hi cheryl, I posted a couple of web sites that have info about Sensory

Integration Disorder and occupational therapy.

My understanding is that, if your child has a disability and is eligible for

special services through the school, occupational therapy may be among the

services provided.

We have not accessed services through our school and I hope someone with

experience can jump in with more info.

Kathy R. in Indiana

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

From: " Cheryl " <Eccl.3-11@...>

> Is there a good book or other source of information on SID? I want to

> be as informed as possible about what I think my son has before I going

> to any appointments. To get a child into OT, does one need to ask for it

> or does the doctor/therapist usually " prescribe " that?