new to group

March 19, 2002

Hi Patty, welcome!

I have 3 sons - twins age 13 and an almost 17 y/o. One of my twins,

, was diagnosed with OCD at around age 11.5 after he began

having constant OCD behaviors. But, like you, I could look back to

his earlier years and see minor OCD behaviors that just didn't affect

him/us on a daily basis like it does presently. He has the type of

OCD where he has to " do something " to keep " something bad from

happening to him " OR until it " feels just right. "

All my kids have been in speech therapy, but the twins were the most

needy due to articulation problems; people thought they were from

some foreign country! (We live in NC) By the way, I, too, was in

speech therapy WAY back in elementary school, and I still can't say

some of my " r " sounds, that sound was/is the hardest for me. Hope

learned the sound OK. I can say most and just avoid the words I

have trouble with. Works so far (I'm 44!).

's handwriting changed when his OCD hit him in 6th, actually

became illegible. So that is when he finally got referred to OT, tho

he'd always had an awkward pencil grip and been delayed in fine/gross

motor skills. The OT really helped a lot and he finished up this

past January. But he will still struggle in some of those areas,

like the actual physical task of writing. He's also always been an

excellent reader but his OCD has actually interfered with his reading

now; has to repeat it in his head until it sounds right, or something.

Your " tall thin male " description reminds me of too. He is

so thin that I worry; his chest seems, to me, to have a " caved in "

look but the doc never has said anything. I'm on the sort of tall,

slim build myself so I figured he took after me (dad's shorter!).

I believe lots of parents here have mentioned their kids' sensitivity

to certain fabrics or clothing (tags, seams). My other twin has some

of this sensitivity - certain fabrics make him " shivery. "

I'm so sorry feels discouraged right now. I know that of all my

3 kids, is also the one that's always been a

little " different " so OCD just seemed to target the worst of my 3

too, being as was already coping with other things too (motor

skills, braces due to missing permanent teeth, speech (which is about

perfect now!), lack of social skills....). Do you know yet if the

psychiatrist is experienced in treating OCD or can refer you to

someone who is? Have you read yet much about the prescription meds

used to treat OCD?

Does have an IEP for school yet? has a Section 504 plan

which works well for us. Gives him extra time for taking tests and

things like that since he's slower in some areas. Plus since writing

is a struggle, he doesn't get graded on things like " how many notes

he takes " in class or from a video, etc. Also, last year, we had

extra time to turn in assignments in 3 of his classes.

Well, please keep us all informed on how things go and what happens

at the pscyhiatrist appt. Take care of yourself too!

> My name is Patty and I am new to this group. I just found out last

> month that my 14 year old son has OCD. He has always had certain

> compulsions since he was around 5. We thought he would grow out of

> them, but we were wrong.

>

> I have 6 children all together ranging from the ages of 18 down to

> 4. My first child is a girl and then I have four boys and then

> another girl. is my second son. He was born 3 months

> premature, weighing 1 lb. 14 oz. He has always been in some type

of

> therapy. When he was 3 it was speech therapy because he didn't

talk

> very much. Then he did some occupational therapy because he had

> dyspaxia. Then he went back to speech when he was 8 because he

> couldn't say his " r " 's. On top of that he has always struggled in

> school with math and language, but he is an excellent reader!!

>

> I homeschool all of my children. My oldest daughter is in her 2nd

> year at a Christian College. She is doing a semester at Oxford

> University in England. Not bad for a kid who was homeschooled

since

> the beginning. Homeschooling has allowed me to give the

special

> attention he needs and also allows me to lighten his load.

>

> Last April was in the hospital for 10 days due to a

spontaneous

> pneumothormax (collasped lung). This happens in tall thin males

and

> it required him to have surgery. There is a 50% chance it will

> happen in the other lung. After this ordeal is when I started

> noticing his excessive hand washing. Also that he would change his

> clothes if he got just a drop of food or water. He also would

change

> his underwear several times a day. Ever since he was little he

> always fidgeted with his clothes or didn't like the feel of certain

> material but I thought that was just him. He also was having a

hard

> time concentrating in school and he seemed depressed.

>

> It was our prayer that things would settle down but they didn't.

> Things just got worst and he got more and more depressed. I had my

> suspicions that it was OCD and I was right.

>

> Now we are all trying to come to grips with what he has. We will

not

> see the psyciatrist until next Tuesday so I am just trying to stay

> calm until then. He is struggling to accept that he has this and I

> don't blame him. He has always been the one struggling with one

> thing or another. He has told me that he feels stupid and he wants

> to be like everyone else. He will ask me why can't I be like my

> older brother? Why can't I be like my friends?

>

> I always knew it would be something with but I never thought

it

> would be something like OCD. It has been hard enough accepting his

> learning disabilites, lung problems, but now a chronic mental

> illness. I have been discouraged this past month but I am trying

to

> take it one day at a time. I have read a lot of books and I am

> becoming educated on OCD. That is why I joined this group and the

> homeschooling group so I could get encouragement and information.

>

> Thank you all for listening and remember in your prayers.

>

> God Bless,

> Patty

March 26, 2002

HI Patty:

Welcome to the group and thanks for sharing about . Please tell

that OCD is a no-fault disorder and is highly treatable. He can

have a lot of hope that he will be able to get his life back on track

and enjoy himself again when he gets effective treatment.

As you have noticed OCD is not something that tends to go away. IN

fact without treatment it generally gets worse. However with the

right treatment, an amazing recovery is possible. OCD can be pushed

into the background of our kids' lives and they can return to

enjoying their lives again. IT is definitely a major struggle and

takes a lot of support and patience from all involved, but the effort

is well worth it. Take care, aloha, kathy (h)

kathyh@...

> My name is Patty and I am new to this group. I just found out last

> month that my 14 year old son has OCD. He has always had certain

> compulsions since he was around 5. We thought he would grow out of

> them, but we were wrong.

>

> I have 6 children all together ranging from the ages of 18 down to

> 4. My first child is a girl and then I have four boys and then

> another girl. is my second son. He was born 3 months

> premature, weighing 1 lb. 14 oz. He has always been in some type

of

> therapy. When he was 3 it was speech therapy because he didn't

talk

> very much. Then he did some occupational therapy because he had

> dyspaxia. Then he went back to speech when he was 8 because he

> couldn't say his " r " 's. On top of that he has always struggled in

> school with math and language, but he is an excellent reader!!

>

> I homeschool all of my children. My oldest daughter is in her 2nd

> year at a Christian College. She is doing a semester at Oxford

> University in England. Not bad for a kid who was homeschooled

since

> the beginning. Homeschooling has allowed me to give the

special

> attention he needs and also allows me to lighten his load.

>

> Last April was in the hospital for 10 days due to a

spontaneous

> pneumothormax (collasped lung). This happens in tall thin males

and

> it required him to have surgery. There is a 50% chance it will

> happen in the other lung. After this ordeal is when I started

> noticing his excessive hand washing. Also that he would change his

> clothes if he got just a drop of food or water. He also would

change

> his underwear several times a day. Ever since he was little he

> always fidgeted with his clothes or didn't like the feel of certain

> material but I thought that was just him. He also was having a

hard

> time concentrating in school and he seemed depressed.

>

> It was our prayer that things would settle down but they didn't.

> Things just got worst and he got more and more depressed. I had my

> suspicions that it was OCD and I was right.

>

> Now we are all trying to come to grips with what he has. We will

not

> see the psyciatrist until next Tuesday so I am just trying to stay

> calm until then. He is struggling to accept that he has this and I

> don't blame him. He has always been the one struggling with one

> thing or another. He has told me that he feels stupid and he wants

> to be like everyone else. He will ask me why can't I be like my

> older brother? Why can't I be like my friends?

>

> I always knew it would be something with but I never thought

it

> would be something like OCD. It has been hard enough accepting his

> learning disabilites, lung problems, but now a chronic mental

> illness. I have been discouraged this past month but I am trying

to

> take it one day at a time. I have read a lot of books and I am

> becoming educated on OCD. That is why I joined this group and the

> homeschooling group so I could get encouragement and information.

>

> Thank you all for listening and remember in your prayers.

>

> God Bless,

> Patty

June 25, 2002

Hi, my name is nancy and i have 3 kids, 14yr son, 6yr daughter Jenna

(autism & OCD) and 1 yr old daughter. I recently left my daughters

father due to the fact he could not handle things w/jenna, he just

thought she needed discipline (yea, ok) that was in feb. this year,

and we were in shelter for a month (which was not a pleasant thing-

jenna is not good with changes) and then found an apartment...so

jenna has gone threw alot of changes lately...it was hard on her

(all of us) but we are getting threw it day by day....She was only

diagnoised this year by a doctor (never had insurance until now) so

our visits have taken along time to get to...the next time she goes

is in july and hopefully will start her on some type of meds...She

is vocal...i can understand what she want, lots of people cant, she

was in early childhood for 2 years and this fall we are going to try

and start kindergarden...She loves school, which is a good

thing...Shopping is a hazardous thing to do...people touching her,

she goes off, wants to take a bath at that minute, or licks where

ever the person has touched her...she will give hugs, only if she

initiaties it.she loves her little sister, she can do anything to

jenna and it doesn't bother her.

sorry this got so long...just thought id give alittle info on her.

thanks for listening and hope to chat with you soon

June 27, 2002

thanks debbie for the welcome....so your daughter melissa is 11, i

really can't imagine jenna ever being that old...but she is getting

there...very tall for her age. So far summer vacation is going

pretty smoothly, i really thought we'd have problems right away,

since everynite she always would say " school tomorrow " , but has only

brought it up one time. Which is good!!! How is your daughter doing

in school? these ieps are hard enough right now, do they get tougher

as they get older?these groups have been great, reading about other

parents and their kids, to let you know you are not alone, I had

just got computer in May, and got onto the internet right away, just

for this purpose, my ex has computer and internet, but would not let

me use it...i think he just didn't want to know anymore about the

autism (denial). but it has help me ALOT...Well, before i ramble

anymore, thanks again for welcome and hope to talk again!!!nancy

September 26, 2002

HI Patty,

I'm glad that you found us. I also live in Florida. Daytona Beach to be

exact. Howdy from the east coast. LOL.

Thanks for sharing your story with us. I show dogs too. Toy Manchester

Terriers, Standard Poodles and Bichon Frises. I can totally relate how the

little guys keep you going on the dark days. The group will tell you my dogs

are my life. I had to take the summer off, but will be at the shows in

Deland, Ocala, Orlando, The Eukunuba Cup and off to Westminster. More than

likely we will hit more shows, but those are my definite ones.

Pull up a chair, enjoy the conversation and welcome. Talk to you soon.

Much love,

Terry

September 26, 2002

Welcome Patty; I am also Patty but use the nick name Melt often. I

was diagnosed in 1977. What a full life you have had. I love your

outlook and am sure many will welcome you to our group. I am on the

west coast of So. Calif. and look forward to knowing you more, till

soon, Melt

> Hello Everyone,

>

> I am new to the group but definitely not new to Stills.

September 27, 2002

Hi Patty,

What a beautiful introduction letter!

Welcome to the Stills Support Group! My name

is Tricia, and I live in Wisconsin.

You have had a time of it haven't you?? I always

say " the one thing I would miss the most would

be my sight. " It is so precious. Reading of your

experiences with your eyesight was both very

sad that you lost your sight, and then happy

that you have regained at least some of it.

I too am so thankful for each and every

day that I have. Even with some days being " not

so great, " I feel very blessed.

When I read your letter, and read the part about

your dogs, I thought immediately of Terry. I see

she has happily responded.

I look forward to getting to know you better Patty!

Your new friend,

~~tricia~~

-- New to Group

Hello Everyone,

I am new to the group but definitely not new to Stills. I would like

to introduce myself: my name is Patty and I live with my husband Jim

and my son in Florida, it's a bucolic setting about 10 miles north of

Tampa. I was diagnosed with Stills when I was 18 months old;

luckily my doctor had seen a case at a seminar dealing with JRA. I am

now 49 and have dealt with this unpredictable disease my entire life.

Despite the Dragons grip, I have managed to live a full and active

life, of course some days, some weeks, and some years are better than

others.

I showed horses and gave riding lessons until I began to focus on our

dogs. We have a small show kennel, we raise and show Standard Smooth

Dachshunds, and a few miniatures smoothes but the big guys are my

true love. The special little dogs are what keep me going as most of

my joints have been affected; I have lost complete motion in some and

others are still a work in progress.

I began having eye problems (related to Stills) when I was about 11.

At 17 was told I would be blind before I was 25. I refused to

believe this, and kept the faith. Believing that with all that I have

gone thru with this disease, God would spare me this ordeal. In 1989

and my vision began decline. I saw the best ophthalmologist in the

country, we tried every drug, eye drop, eye injections, surgery (11

in nine months), not counting lasers or repeat surgery's and nothing

worked. My pressure from secondary glaucoma just kept rising my last

hope was an interoccular implant and though not many had been done at

that time, I had no choice. So, in 1993 we went for it, the surgery

did not go well as my eye was similar to tissue paper and they had to

reconstruct it with donor tissue. This left me totally blind for a

year and a half.

During that time, I spent each moment educating myself on life as a

blind person, went to school for the blind and learned to use

assistive technology, received a guide dog, started a support group

for the working age blind and visually impaired and a non profit

advocacy group. I learned to help myself while helping others. I am

one of the lucky ones because after my eye healed, I was ready for

the next surgery (why not I had nothing to lose) I went into the

surgery blind and came out a hour later to see my husband smiling

face, with a few more gray hair than he had before.

What a blessing, God was good to me and taught me so much I would

never trade that time for anything. I am still legally blind, my

vision is very limited, but I can still see most of life's beauty.

When I get up and look outside to see a butterfly flitter across a

flower I am amazed and overwhelmed with joy, for it was not long ago

I sat in that same spot in the gray murky fog absent of the simply

beauties of life. That same fog that resides in the view of many of

my friends even today. So each morning I get up to face the dragon,

take my MTX, and prednisone and know today is going to be a good day

because there have been many darker ones in the past.

Patty Batts

September 28, 2002

Dear Patty,

Welcome to the group. I also have Systemic Juvenile Rhuematory Arthritis

since age 12. I am now 35. All I can say is WOW! I look forward to

getting to know you better.

Again Welcome,

jatw@...

September 29, 2002

Welcome to the group! I have a daughter, age 7, with SMA II/III. I look

forward to learning more about your family ...

(and Jensen)

New to group

HI-

We are the Watkins family. We just learned that our 18 month old daughter,

Callie has Type II SMA.(We are awaiting blood test results- but our

neurologist feels strongly that is what is going on and so do we from what

we read and seen in Callie). Callie is a funny little girl who loves to play

silly games with us. She has a big sister, who is 7 yrs and big half

brother Doug who is 16 yrs- they love all over Callie. While mom and Dad

work,Callie gets to spend most days with her Aunt and One of her 3

Cousins( all of them were born within 9 months of each other). We can just

see it now- Callie giving the others a lift when she gets a motorized chair.

Callie has sparky hazel eyes,long lashes and curly dark hair. She likes

music,books,and broccoli. We have 2 cats and some fish.

We are just beginning our SMA adventure and look forward to getting to

know some other amazing SMA folks.

Hugs-

Steve & Marcia

Meg and Callie

September 29, 2002

Welcome, Watkins!

Our son Bernie has type 2, and he is 6 years old and doing well. If you are

interested in what he (and the rest of our family) is like go

http://www.ugalumni.uoguelph.ca/~eross

Our whole SMA family is here to support you. You will find this elist to be

a gold mine of information and experience.

Bettylou Ross

September 30, 2002

Welcome! This is a great place to give and get information. Just throw

anything out there and someone will have a suggestion or opinion.

About me...turning 40 on Wednesday (wow...and those doctors told my parents

I wouldn't make it past 8 y/o...ha!)....married to (aka-->awesome

husband and bestest friend)...case manager in a hospital's rehab unit

<master's level social worker...like my cool friend a on the

list>...4 beautiful cats let us live in their house in Houston...oh, and

overly opinionated at times but these nice people put up with me anyway.

Ohhh...I almost forgot-->I have sma 2 and was diagnosed at around 18 months

old too. I have a trach and use my specially made trach button to keep it

covered but opened so I have it when I need it for suctioning (rarely).

Like 's parents, my parents helped me to believe I could be anything I

set my mind too.

So, let us know how we can help.

Peace,

Lori