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Re: Digest Number 78

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>Fertz,

More on the program for kids at the conference from Diane Sands, who I've

been in touch w/by e-mail, founder of OCSDA. Thoughts on trying to take

Kelsey and leave w/mom? I can't decide.

Dude

Dear List Members,

>

>I am attempting to forward Diane's post to all.

>

>Take care.

>

>Louis

>louis@...

>ocdnet@...

>/subscribe/ and

>/subscribe/ocdandhomeschooling

>

>

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>Message-ID: <004e01be8d77$c9463a00$9fe4fea9@diane>

>Reply- " DIANE SANDS " <pres@...>

>From: " DIANE SANDS " <pres@...>

> " Louis Harkins " <louis@...>

>Subject: Re: Digest Number 78

>Date: Fri, 23 Apr 1999 03:54:43 -0700

>MIME-Version: 1.0

>Content-Type: multipart/mixed;

> boundary= " ----=_NextPart_000_0043_01BE8D3D.055DAFE0 "

>X-Priority: 3

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>X-Mailer: Microsoft Outlook Express 4.72.3110.1

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>

>Dear Louis:

>

>Could you please post the following? I've included as a Word attachment also

>if easier.

>

>Thanks,

>

>Diane Sands

>

>

>Dear OCD Parents,

>

>On behalf of the OC & Spectrum Disorders Association (OCSDA), welcome to

>OCDandParenting List. My name is Diane Sands and five years ago I founded

>the then OC Foundation of California, now called the OCSDA. More important,

>I am a kindred spirit with you and your families on this road of discovery

>and recovery as a woman who has struggled with the silence and pain of OCD

>and a handful of related disorders since childhood.

>

>I'd like to tell you a little about the foundation that supports this list,

>reveal a few of the programs in place and invite you to help guide those to

>be. The Alphabet Soup Center was created for families like yours. Many

>years ago, I dated a man who said that between my educational entitlements

>(degrees) and my neurobiological acronyms (OCD, ADD, non-tic Tourette's and

>more) I was like a bowl of Alphabet Soup. When I was finally diagnosed 9

>years ago after living a life in secrecy and pain, I knew someday, somehow,

>I would find a way to save ONE CHILD, just one, the agony of silence that

>only we, who struggle to push through, know.

>

>The Alphabet Soup Center is a family centered program for children and

>adolescents with OCD and related disorders coming together periodically

>(until we get full-time funding) in some wonderful ways. Created for the

>1997 Los Angeles conference, we had over 40 children and teens expressing

>their OCD through art projects, movement, theatre games and traditional

>support. The parents spent the day across the hall in a conference with

>doctors and therapists who have dedicated their professional lives working

>with children and teens with OCD and related disorders. Many of the parents

>had OCD and other disorders themselves; some family members who had been

>hard to convince that what we suffer from is real, found safety in that huge

>room of parents - safe enough to create understanding.

>

>On Mother's Day weekend this year (May 7 - 9) we will join together once

>again to learn, experience, network and play (never too old to play) … it's

>at Universal Studios in Hollywood. We as individuals and family members

>work very hard at handling our OCD - even with behavioral therapy and

>medication where indicated. For the " kids, " it's important to play in ways

>while looking at self-esteem and any challenges they feel comfortable

>sharing. Siblings are always included for their need to understand and be

>understood in this family process is one key to harmony in the home. And,

>for the parents, the opportunity to join together in a safe environment to

>share challenges, develop relationships with other parents and form a bond

>of understanding and comfort is formidable.

>

>Obviously, I'm not a regular on your list - the list is for you, the

>arents - and in great hands with Louis Harkins and Dr. Barbara Freeman.

>Some of you have wondered about the difference and/or relationship between

>the OC & Spectrum Disorders Association and the OCF, Inc. and given the

>conference questions, this would be a good time to eliminate the confusion.

>The OCSDA began as an affiliate in formation to the OCF, Inc. in 1994. It

>became clear early on that our scope and purpose had broadened in response

>to a worldwide community that visits our website (http://www.ocdhelp.org)

>and those we hear from by phone, mail and FAX. In light of this, our goals,

>business plans and geographic boundaries no longer fit with those of the OC

>Foundation, Inc. and we decided to remain an independent non-profit

>foundation as we had been since our inception. Our goal is not to duplicate

>successful programs already in place but to provide an adjunct to services

>already available. Ergo, our Marathon Support Weekends, Alphabet Soup

>Center, Cognitive-Behavioral Learning Series (professional training), Teen

>and Parenting Lists and collaboration with the related spectrum disorders

>associations. We value the doors opened by the OC Foundation, Inc. 10 years

>ago and continue to utilize their valuable educational literature in our

>direct service programs and innovative programs.

>

>We've priced the conference for family attendance and created family

>activities to celebrate Mother's Day. Normally our bi-annual conference is

>held in July, but this year the OCF Inc. changed their conference date quite

>unexpectedly to July and the OCSDA did not want to fragment the resources

>and energy of our collective community in need.

>

>Our speakers are leaders in the field of adult and family OCD and spectrum

>disorders and the only place you'll find family centered programs.

>Considered a model for adjunctive therapy, we'd love to share the Alphabet

>Soup Center with you and yours in May. It's not too late to register and

>receive discounted travel arrangements. Visit our website at

>http://www.ocdhelp.org.

>

>With warmth and encouragement,

>

>

>Diane Sands

>President & Founder

>OCSDA

>pres@...

>

>

>

>

>

>Attachment converted: Macintosh HD:Dear parents.doc (WDBN/MSWD) (0000361C)

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  • 6 months later...

In a message dated 10/30/99 9:30:05 AM Eastern Daylight Time,

cures for AIDSonelist writes:

>

> What is your url again? I lost all my

> bookmarks and address book a few

> days ago. One of your links to an

> article by Bruce Ellison is great.

>

<A HREF= " http://hometown.aol.com/curedaids/myhomepage/profile.html " >Cured's

Web Profile</A>

I think the Ellison article is at this link:

<A HREF= " http://www.aidsinfonyc.org/heal/index.htm " >HEAL-NY</A> along with

some other great articles. This site has not been updated in a couple of

years, but that's the beauty of dealing with the truth. You don't have to

update.

Ed

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  • 2 months later...

re: Dried Botanicals on soap

I have done this two ways. First one was very successful. I made up some

M & P Clear and added the flowers to that. I used lavender buds. This

mixure was poured into the base of my mold. Then I made my CP soap and

topped it up with that. Worked really well and a very interesting effect.

The second way was to make the soap. Give the surface a coat of Parrafin

Wax. Make sure it it completely covered. Next glue press flowers onto the

bars and when dry give another coat of Parrafin Wax. They looked a bit

bumpy to me but when it was dry I polished it with a cloth dipped in

mineral oil and rubbed fairly hard and they came up well. The only thing I

would advise is don't use flowers that are too thick. The least area the

parrafin has to cover ie depth or the flower the better. I you use stems or

centres that are thicker then you will have a bigger build up of wax. HTH

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  • 2 months later...
Guest guest

Hi,

I had also developed a horrible rash while on combo. I bounced back and

forth between my PCP `and GI before they decided it was a side effect from

the treatment. They gave me Ultravate cream which really helped. It is a

prescription cream but differ tremendous relief. The rash did not

completely disappear until I was off the meds. Good luck to you.

Beth

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Guest guest

Hi,

I had also developed a horrible rash while on combo. I bounced back and

forth between my PCP `and GI before they decided it was a side effect from

the treatment. They gave me Ultravate cream which really helped. It is a

prescription cream but differ tremendous relief. The rash did not

completely disappear until I was off the meds. Good luck to you.

Beth

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Guest guest

Hi,

I had also developed a horrible rash while on combo. I bounced back and

forth between my PCP `and GI before they decided it was a side effect from

the treatment. They gave me Ultravate cream which really helped. It is a

prescription cream but differ tremendous relief. The rash did not

completely disappear until I was off the meds. Good luck to you.

Beth

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Guest guest

Hi,

I had also developed a horrible rash while on combo. I bounced back and

forth between my PCP `and GI before they decided it was a side effect from

the treatment. They gave me Ultravate cream which really helped. It is a

prescription cream but differ tremendous relief. The rash did not

completely disappear until I was off the meds. Good luck to you.

Beth

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Guest guest

MB:

Your letter couldn't have come at a better time! You're not gonna believe

this, but last night DH AGREED....do you hear me.....AGREED to let me start

the Risperdal!!

As most of you already know, I had filled it before DH had his doubts, so I

just kept staring at the bottle wondering to myself " what if? " ....tried it

last night at half a tab (tab is 1mg)....didn't notice anything, really.

Does this stuff take a few days or weeks to " kick in " .....although if he's

gonna get wild on it, that won't take very long at all with him....he is only

40 lbs., but seems to have a very high tolerance for drugs, or metabolizes

them quickly.

Guess we'll see what happens....have an appt. with doc on Wed.

afternoon....don't know if giving at night will show any noticeable

improvements until we start on day......have to wait and see....

Thanks so much for your input, though, it was really an in depth summary of

various meds, most of which you mentioned, has already, or currently on!!

I told DH the next business trip out of town, he can take with

him.....hehehe....that didn't go over very well......his perception of a

" hard time " with is SOOOOO much different than mine! Even when I took a

vacation to NYC last fall, he didn't admit that was a handful!

Oh well, will keep you all posted....guess it's a good thing DH finally

relented......or you would've seen us soon on " Judge Judy " !!

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Guest guest

:

Just scrolled down to your comments and am thanking you also for taking the

time to answer me with your opinions.....as you must have already read from

my previous post, DH has AGREED to let me try the Risperdal on

........maybe God finally figured I'd had enough and convinced him to

agree with me!

I, too, had my doubts about giving it on the " sneak " .....was at end of my

rope when the " light " finally went on in DH's head....thank God it didn't

come to that......

Thanks so much for your input! Wish me luck!

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In a message dated 3/19/00 11:12:34 PM Pacific Standard Time,

onelist writes:

<< Last night she slept from 10 pm to almost 9 am - amazing

for her! Don't know if it's the risperdal - I know she's exhausted and so

glad to finally be home. >>

Maureen:

How long was on Risperdal before this wonderful all night sleeping

episode? Just wondering....still waiting for 's to work.....

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In a message dated 3/19/00 11:12:34 PM Pacific Standard Time,

onelist writes:

<< She is 8 and weighs approx. 60 pounds (at least

she did before surgery!), and her dose is currently .25 mg at bedtime.

We're

supposed to add another .25 mg dose in the morning sometime this coming

week, >>

Wow, Maureen.........'s initial dose is .50mg, but the doc knows how fast

he metabolizes drugs......he's only 40...half of what weighs, but

taking TWICE the dosage!

Oh, well, " different strokes for different folks " .......

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In a message dated 3/19/00 11:12:34 PM Pacific Standard Time,

onelist writes:

<< risperdal can

make you drowsy -- and this is a good use of a negative side effect. >>

CK:

Ohhhh....okay......

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In a message dated 3/20/00 4:09:44 PM Central Standard Time, Ltb3105@...

writes:

<< How long was on Risperdal before this wonderful all night sleeping

episode? Just wondering....still waiting for 's to work.....

>>

Took only a couple of days, but don't know if 's situation is a good

trial. She hadn't slept much at all during her eight nights in the hospital,

so she was truly exhausted. I'm sure that had a lot to do with it. Her doc

said it would take about a week to achieve a therapeutic blood level. I

would give it some time. Keep us posted on 's progress!

Maureen

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Guest guest

Maureen,

started sleeping better and much later in the morning almost

immediately. He has sleep apnea and I think the Risperdal makes him sleep

more peacefully. I'll be anxious to see with his next sleep apnea study in

two weeks, if this is true.

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  • 9 months later...

Kari,

My son has been diagnosed with moderate Verbal Dyspraxia. He was diagnosed by his speech pathologist at Early Intervention in our state. He was 18 months old when he was referred to EI for speech services. I have heard, and I emphasize HEARD, that speech pathologists are legally unable to make and official diagnosis and that a neurologist is the one who would officially diagnose this condition. I have also heard that a child under 3 years of age is usually given a so-called "working" diagnosis because it is difficult to diagnose a child under three.

I dont know if any of the above is 100% true for I have only heard it from other people. Maybe others can elaborate a little more after they have read this. But I do know that having my child in speech at an early age has helped him immensly and even if your child is under 3 he can most likely get speech services to help him. I would recommend it as soon as you can. Try the Early Intervention program in your state. They have been great for us.

Sincerely,

Maureen

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  • 4 years later...

What is the best tests to ask for when having my children tested for Lyme? I may

have exposed them in utero. Pleas email me privately, off line.

If you have any suggestions, I am open. I just was diagnosed after 8 years, 3

years severe sickness.

a

---------------------------------

Stay connected, organized, and protected. Take the tour

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