to DP

August 6, 2006

DP,

I just posted a long message about how my daughter's

symptoms started. She is 9 and going into 4th grade

just like your son. Her symptoms seemed to come on

very rapidly after the illness and death of her

grandfather (He had a stroke and live 3 weeks). She

seemed to somehow believe she could have prevented his

death if she'd done things like slept on her floor and

skipped eating. Also, the number fears and eventually

fears of others touching her told us there was

something wrong. We started thinking something was

wrong at the beginning of 2nd grade, but didn't get

her to the doctor until February of that year. The gap

in our first suspisions and receiving help could be

attributed to our disbelief and hoping it would get

better or go away and trying to find a psychologist

that treated children on our insurance list. What

makes me feel the worst is that she now admits she was

doing things in kindergarten. She was very good at

keeping it well hidden.

This is incredibly tough and I know exactly how you

feel when you say it's so tough to be judged all the

time by others. At my daughter's worst, she went only

to school and counseling and home and church part of

the time. She has a really tough time with crowds and

we've had 2 family vacations where we flew since

syptoms appeared. The meltdowns she has had at airport

security were met with stares, glares and even

snickers by some on lookers apparently thinking she

was just a spoiled brat. I think the judgement of

other's is one of the toughest parts to this whole

ordeal. I know however that I know the truth and that

if my child could hold it together she would.

My daughter takes Zoloft 50 mg. She has changed

medications a multitude of times over the past year

and a half. She has remained on Zoloft, but has taken

other medications with it including, Risperdal,

Abilify, Requipp, Focalin XR and now has been given a

prescription for Geodon. Most of the drugs mentioned

are in the anti-psychotic family which is supposed to

help resistent OCD. We go to counseling every week or

two depending on where her symptoms are at the time.

We made a great deal of progress in the beginning, but

lost ground last summer and she seems to develop new

behaviors all the time. It is incredibly frustrating.

I do however know that we are a million miles from

where we started and that all the interventions we are

making at home, OT, therapy, and school are making her

life more livable. She also has an Aspergers diagnosis

and ADD so it's hard to know where one thing ends and

another begins.

Best of luck. Hang in there. And most importantly know

that you are not alone. I think that's the most

important thing we can get out of this forum. I only

joined earlier this week and I feel such a since of

relief to know that our family is not alone.

I often times feel as if I am a prisoner in my own

home as well.

Check with your school about modifications and

accomidations they can do to help him be more

successful. There is special education testing, 504

which falls under regular education and there are

things the school can do to make his life better at

school. My daughter can hold it together at school and

come home and totally meltdown over things that

happened at school.

Hang in there, it will get better.

Darletta

--- Adele Mahan <adelem@...> wrote:

> Hi,

>

> I am new to this list. My son has been diagnosed

> with OCD after struggling

> with fears of weather for over a year. Last fall

> after therapy he seemed to

> get over his fears for it all to come back again

> this spring along with many

> other ones added such as, darkness, bugs, bad

> grades, etc. He is 9 years

> old going into 4th grade. I am amazed at how many

> kids get this at this

> exact age. Seems to be such a science to it all. My

> son is also very bright

> and creative with a huge imagination. There are days

> when I too just wish he

> were " average " and maybe things would be so much

> easier. Our struggles began

> in 1st grade when his grades just didn't seem to

> match his intelligence. At

> that time I decided to have his IQ taken to see what

> we were dealing with.

> He is in the superior range and something was wrong.

> Last year the school

> moved him down to the lowest levels of classes from

> being in the Gifted

> program, we thought he had ADD and put him on

> Adderal and he made a huge

> improvement on his grades but his fears became

> worse. So now ready to start

> the new year I am trying to figure out how this new

> diagnoses of OCD is

> affecting his grades and what we can do to be

> prepared this upcoming year.

> He is off Adderal and has been on Zoloft for over 4

> weeks with not much

> improvement, waiting for more time and to up his

> dosage some more to see how

> it goes. This is so exhausting for moms, I feel like

> a prisoner in my own

> home. Anyway, I look forward to reading everyones

> post and learning more

> about this. It also helps so much to hear others

> stories and know that you

> aren't alone. I think the hardest part of this to me

> is being judeged by

> those that don't understand and feeling all alone.

>

> DP from Charlotte, NC

>

> _____

>

> >>Sorry to be so late to replying to this, but

> ,

> you captured my fears exactly about my daughter. She

> also started showing symptoms in third grade. I was

> told that most OCD kids are very bright and

> creative.

> Some days I would wish my kid was " average " if that

> meant she could be " normal. " >>

>

> Dorraine

>

> --- nglcreel <nglcreel (DOT)

> <mailto:nglcreel%40> com> wrote:

>

> >

> She is so bright, and smart and funny, I don't

> want to loose that. .... I worry about her future

> and if this will get any worse or if we caught it

> early > enough. >

>

> __________________________________________________

>

August 6, 2006

Darletta,

Thanks for your response to my post. Boy do I understand the airport thing.

We had planned this huge vacation to the Grand Canyon this summer and of

course my sons first reaction was " I'm not going on a airplane! " He put mom

and dad into a big anxiety attack. My husband and I both paniced that we

would not get him on the airplane and our thousands of dollars spent on this

trip would go down the tube. We ended up preparing my son with talking about

airplanes ahead of time with his Dr. and then my husband paniced and called

the pediatrician to beg for some kind of medicine to get him on the plane

which was not available. After all that, my son did beautifully on the

plane, actually enjoyed it. So here we paniced and he did fine. Then we

arrive at the airport and take a shuttle to the place to get a rental car,

it is 104 degrees in this parking garage and we are suppose to just pick out

any convertible car to take. My son decided we had to have this one blue car

that was not a convertible and had a major fit, screaming at the top of his

lungs for all to hear, demanding this one car that was not what we payed for

and refusing to get in any other car. He was stuck, Ugg! These attacks seem

to always come when least expecting it. It took us over 20 minutes to get my

son in this car, in oven temperatures, we finally had to act like we were

going to drive off and leave him to even get him to budge. Here we were so

excited to start our vacation and once again he starts it with a major

breakdown.

He has had a number of these fits in public places, he acts like a 2 year

old have a full blown tantrum and it looks and sounds ridiculous from a big

9 year old. I have never been a high stress person but I feel like this

disorder is rubbing off on me and I begin to start panicing with the thought

of what could happen. It has made me not make plans with other people

because I don't have the energy to deal with what might happen, I am

beginning to hibernate. Some days when these attacks come it takes all I can

do to control him and the situation during the day, We both end up going to

bed exhausted from the challenges of the days. Then many nights I wake up at

midnight and recap the day thinking all the many ways I failed, or what

could I have done different.

You talk about your daughter admitting to doing things in kindergarten, I am

wondering what all is going on in my sons head that I don't know about. We

haven't noticed compulsions of any kinds which made me doubt he had OCD but

he sure gets stuck in his obsessions.

My son has always struggled with crowds, even as a baby. I remember going on

vacation when he was like 3 months old and just screaming everytime we went

to a restaurant. He is constantly fighting to not go to public places. His

last breakdown was in the Home Depot and he said he just couldn't stand it

in there, we had to go. I don't understand this and why he is struggling

with this?

Today, we are getting ready to try and go to church, my son hates sitting in

church, has made scenes in there also. Can't figure out why that is so hard

for him when many other kids can go. My son is constantly struggling with

being bored, just can't stand to be bored at all.

After all this said, I am so thankful for our psychologist who seems to

really understand and have some solutions. We are now going twice a week,

but all this takes so much time to get to the root of it all.

Enjoy telling our stories,

DP

_____

From:

[mailto: ] On Behalf Of Darletta Jaycox

Sent: Sunday, August 06, 2006 2:13 AM

Subject: to DP

DP,