Question

August 31, 1999

We are giving Bill just the Piracetam for now. And he also has thyroid

problems. He take synthriod for them. The doc doesn't think the piracetam

will interfere with the thyroid meds. But just to be safe she is doing a

thyroid check in a few weeks to make sure everything is how it should be. I

will let you know if anything shows up strange. I will say the piracetam has

made 2 big differences in Bill. 1 good, 1 bad! The good thing is he seems to

be potty trained!!! the bad is he is hyper as hell and has a bad attitude

problem! He is being more stubborn than usual! Even his speech therapist has

asked what is going on with him! But we are going to wait and see if things

level out as he gets used to the medicine!!!

- Mom of Bill, and Alec ( age 4) and Hunter( age 2)

August 31, 1999

Hi Judi, Landon takes

the MSB with the Piracetam. I know another mom who just uses the

vitamins without Piracetam. I know you have to have a prescription for

the Piracetam but I think you can just order the vitamins without the

Piracetam. I'm not sure about just ordering straight Piracetam. I'll

ask a mom whose child is also on the vitamins. She is a pharmacist so

she should know. I'll see her Thursday night at our support group

meeting. Also, I can't wait to hear about the school tour! ( mom

to Ashton and Landon (DS) 14 months

--- Judi Grossman <judig2@...> wrote:

> From: Judi Grossman <judig2@...>

>

> Hi Everybody! I have a question for all of you out

> there who are using

> the nutrivene or MSB. Are you all using piracetam

> with the vitamins?

> Does anybody use ONLY the piracetam? Just curious.

> We had looked into

> giving it to Sam & but I just wasn't

> convinced that it wouldn't

> interfer with their thyroid problems. (That and the

> fact that they

> seem to be doing just fine without it right now.)

> Just curious!

>

> Judi - Mom to Sam & , 2yr 8mos, Identical

> Twins

>

> __________________________________________________

>

August 31, 1999

Hi Judi;

I have used the NuTriVene-D and MSBplus (that is what is on

now)...we have also used the piracetam by its self as well. If you have any

specific questions, just ask.

, mom to Nicala & (2 years 8 months) and (10 months)

September 2, 1999

In a message dated 8/31/99 1:08:41 PM Eastern Daylight Time, judig2@...

writes:

<< Does anybody use ONLY the piracetam? >>

Dear Judy,

Piracetam should always be used inconjuction with vitamins such as

Nutrivene-D D or MSB Plus. The vitamin Choline helps the Piracetam do it job

affectively within the body.

Karyn wife to , mom to Adam and (DS) 4yrs. old

North Chili, NY

October 15, 1999

Hi - I have just joined this group! My name is Carolyn and I have 4 children, 2

have DS. They are 3 1/2 and 2 1/2. I call them my 'twins'. They are very

adorable and I love them. It's so cute having 2 quite close in age - they get

along well most days but like typical toddlers they love to cause trouble!

Grommets a little plastic things with holes in that a ENT specialist inserts

into the childs ear drum to allow the build up of fluid behind the ear drum to

drain allowing better hearing and fewer infections. GASP! ALL my kids have

them! Emma had a hearing loss until she had grommets inserted and now she's

much better. Isn't Wallace and Grommet the funniest thing you've ever seen??

Carolyn

October 16, 1999

What's Wallace and Grommet??

Sara

--- tonycarolyn <tonycarolyn@...> wrote:

<HR>

<!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0

Transitional//EN " >

<META content=text/html;charset=iso-8859-1

http-equiv=Content-Type>

</HEAD>

<DIV><FONT size=2>Hi - I have just joined this group!

My name is Carolyn and I

have 4 children, 2 have DS. & nbsp; They are 3 1/2 and 2

1/2. I call them my

'twins'. & nbsp; They are very adorable and I love

them. & nbsp; It's so cute having

2 quite close in age - they get along well most days

but like typical toddlers

they love to cause trouble!</FONT></DIV>

<DIV><FONT size=2>Grommets a little plastic things

with holes in that a ENT

specialist inserts into the childs ear drum to allow

the build up of fluid

behind the ear drum to drain allowing better hearing

and fewer infections.

GASP! & nbsp; ALL my kids have them! & nbsp; Emma had a

hearing loss until she had

grommets inserted and now she's much better. & nbsp;

Isn't Wallace and Grommet the

funniest thing you've ever seen??</FONT></DIV>

<DIV><FONT size=2>Carolyn</FONT></DIV></BODY></HTML>

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>

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October 16, 1999

Re: Question

> From: Sara Greenberg <dsyndrome@...>

>

> What's Wallace and Grommet??

>

> Sara

>

Wallace and Grommet is the funniest set of animated short films that ever

came out of Britain - ofcourse that's just my opinion! They are the

characters of Nick Park and he was nominated for an for " A Grand Day

Out " . Since then he has done The Wrong Trousers and A Close Shave. It's

like time lapse photography with models. Wallace is the man (an inventor)

and Grommet is his faithful dog who has human like capabilities! It's very

clever - but then again, I do have a strange sense of humour. See if you

can find in at the Video shop, it's worth a look!

Carolyn

October 17, 1999

Margaret,

So that's why Helen takes no notice of me... she has had cartoon dogs stuffed

in her ears for the last year. I can't understand why I never noticed them

drop out. LOL!

Actually, I think you call them " tubes " over there.

If you think the teeth grinding is bad, just wait for the raspberry blowing!

Eileen

October 18, 1999

Welcome Carolyn,

My name is and I have 17 month old boy/girl twins. (DS) and Sloan.

I hope you enjoy this list as much as I do! I find alot of support and

information.

Again Welcome and I'm looking forward to getting to know and your family.

November 30, 1999

In a message dated 11/30/99 9:53:47 AM Hawaiian Standard Time,

phouser@... writes:

<< have a thyroid disorder o >>

As a matter of fact, I do indeed have a thyroid disorder-hypothyroidism! I

have been taking thyroid medicine for years...interesting hah?

Just thought I would respond...

Peggy, Mom to , Jordan, Tyler, Dylan (DS), and baby Caleb (DS and

Trisomy 9p)

November 30, 1999

Hi Pam,

As far as I know I do not have any thyroid-related disease. I am thankful

each day for my health and how well I feel, except for being tired, due to

interrupted sleep. What are some of the symptoms of thyroid disease?

Marcia

Mom to Sara (DS) & 5 and Lucas 9

November 30, 1999

Hi Pam: I discovered after I had my twins that I had

hypothyroidism. Right after they were born, I had been

trying to " pump " and nothing was happening. I tried

" Reglan " (which I was told is successful in getting

moms who adopt to " let-down " ) and " Oxytocin "

nasal-spray, as well as herbs, " Fenugreek " and I

forget what all else. Nothing worked. They weren't

sure if it was the fact that I delivered at 26.5 weeks

and my body was in " shock " or the whole " trauma " and

stress of having two preemies. Then, one day the

lactation consultant asked me if I had ever been

tested for thyroid. I called my Dr and she tested me

and sure enough, my TSH was elevated. I've been

taking synthroid ever since. I've never heard of a

correlation between a mother having hypothyroidism and

having DS kids. I know that Dr. Jill ' study

recently showed a folic-acid difference in mom's of DS

kids. Interesting, because I was taking (and still do

take) folic acid supplements before I got pregnant.

Just for kicks, should we start a " list-poll " to see

how many of us have hypo/hyperthyroidism?

Judi-Mom to Sam & , almost 3! Identical Twins

--- Pam Houser <phouser@...> wrote:

> Hello Everyone,

>

> I have something I want to ask everyone if I may?

> After I had the twins

> a friend of mine came over to visit one day. She was

> telling me when she

> worked in another state with some Dr.(she is a

> nurse), he had told her

> he thought DS was caused from the mother having a

> thyroid disorder. Well

> 2 months later while having some routine blood work

> I found out I had

> hypothyroidism. So just out of curiosity I was

> wandering if any of you

> have a thyroid disorder of any kind. I found this

> interesting. I just

> remembered today and wanted to see what everyone

> thought. Thanks.

>

> Pam mother toHannah and age 4 both DS.

>

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> http://DSyndrome.com/Multiples

>

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>

__________________________________________________

November 30, 1999

I don't have hypo/hyperthyroidism as far as I know. I have never been

tested for it and think of myself as fairly healthy. BUT I do have

premature Grey hair!!!

, mom of Nicala and ,ds (almost 3) and (13 months)

December 1, 1999

I dont and I havent ever heard that theory.

mom to Rudy (ds) & 12, TJ 16

January 25, 2000

Yes, I did get the picture. I am waiting for it to arrive. I really do

love it!

What was up with last night's chat? I only knew two people in

there....where was everyone?

Question

From: Judi Grossman <judig2@...>

: Did you ever get the Picture you were bidding

on from EBay? Just curious!

Judi

__________________________________________________

January 26, 2000

,

Happy to hear you got the picture. Enjoy it.

Mabel, mom to Carolina, Cristian and a-ds 10 months old

>From: " Dean Stauffer " <sandds@...>

>Reply-Multiples-DSonelist

><Multiples-DSonelist>

>Subject: RE: Question

>Date: Tue, 25 Jan 2000 23:19:54 -0700

>

>Yes, I did get the picture. I am waiting for it to arrive. I really do

>love it!

>

>What was up with last night's chat? I only knew two people in

>there....where was everyone?

>

> Question

>

>From: Judi Grossman <judig2@...>

>

>: Did you ever get the Picture you were bidding

>on from EBay? Just curious!

>Judi

>__________________________________________________

>

January 27, 2000

Congratulations! That's great!! How are you going to

frame it?

Judi

--- Dean Stauffer <sandds@...> wrote:

> Yes, I did get the picture. I am waiting for it to

> arrive. I really do

> love it!

>

> What was up with last night's chat? I only knew two

> people in

> there....where was everyone?

>

> Question

>

> From: Judi Grossman <judig2@...>

>

> : Did you ever get the Picture you were

> bidding

> on from EBay? Just curious!

> Judi

> __________________________________________________

>

March 4, 2000

Welcome Jessie.

Bossing Back is a term from Dr. March who, with Mulle, wrote

OCD in Children and Adolescents.

What it means is: identify the thought or action as ocd

understand this is an irrational thought or action

boss back - or control these thougts or actions

In other words, if exposured to an anxiety provoking thought or situation,

the person with ocd will become nervous. As they learn to tell that this is

an ocd thing, they develop the resistance to ignore the urge to fulfill the

compulsion (response prevention).

If I may, I will use the worry about not being picked up from school. You

can promise to be there - but what if (pun intended) you dont arrive on time

or forget?? Life is like that. You can develop a safety plan to call if your

more than 15 minutes late, if you want to... I would tell 3 ocd kids that

I'm not worried about being late, and I'll get there, or they can walk home

or take the bus. I regularly reinforce that the concern is their ocd and not

mine, so I dont have to do what it says! The thoughts may make them anxious,

but if I said I will pick up, I will. Ask your daughter to practice

bossing back the thoughts. In her head, she can practice saying stuff like:

" Its not me its my ocd " which is a popular phrase, or something more

original like: " I know mommy is coming so get OUT! "

My 10 yo is very worried about illness/diseases. We ignored her gagging by

making jokes, telling her doctor stories, things that really made her

nervous, but after a while she understood that its an ocd thing. The next

week, when she was feeling nervous again - feeling sick, etc - she bossed

back the thoughts, and told me afterwards that it only took 10 minutes and

she did it on her own! Hopefully your daughter will be able to say that to

you in no time!

I am a firm believer that the sooner we start exposure and response

prevention, and NO enabling, the faster everyone learns to live with this

obsessive and compulsive house guest!

take care, wendy in canada, wb4@...

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

March 5, 2000

HI Jessie:

I am sure you will get a lot of good answers to your question about

" bossing back " . This terminology comes from Dr. March's protocol for

children and adolescents with OCD and is well described in his book with

Mulle and in its precursor " HOw I Ran OCD Off My Land. "

IT is a very helpful technique to encourage our kids with OCD to tackle the

hard work of behavior therapy. We ask them " Who's the boss, you or OCD? "

and when a symptom comes up we ask them to boss it back as they are

learning in CBT therapy. I recommend Dr. March's boook to every OCD parent

who is looking for a treatment manual that explains how OCD can be brought

under control. It is written for professionals but is quite readable for a

lay audience like you and me.

Through a process known as " mapping OCD " the child is asked to draw circles

of what they control and what OCD controls in their lives. They are also

asked to list OCD symptoms which sometimes they control and sometimes OCD

controls. This is called the transition zone. These are usually the ones

which are the initial targets for learning to boss back. It is our jargon

for exposure and response prevention (E & RP) which is the core of CBT for OCD.

Our kids tackle these symptoms by facing the trigger of their obsessions

and then not performing the rituals or response used to reduce anxiety. So

of course their anxiety increases and, as they ride it out, their anxiety

starts to lessen through a process called habituation. This is a very

general description and there are many treatment manuals which describe

this idea in detail for the reader.

A typical ritual with our kids is asking for reassurance, e.g.Will I pass

6th grade, mom; please tell me you will remember to pick me up, or is there

something funny about my face....etc. We ask our kids to boss this and

warn them we can only answer the question once. When they ask again we

tell them I already answered that, or that is OCD talking, or the doctor

told me that I can only answer once, etc. My son, Steve, would get very

annoyed at me when I did this and what's worse, when I forgot things and

asked him for a reminder he would tell me " I already told you that and can

only answer your question once " . Then we would have a good laugh about

that and it would break the tension.

Take care, aloha, Kathy (H)

kathyh@...

At 08:32 PM 03/04/2000 EST, you wrote:

>From: Jessie1057@...

>

>Hi,

>I am pretty new to ocd and the list. I had read from some of you about

> " bossing back " . Can someone please explain this a little more for me. My

11yr

>old daughter may have ocd and anxiety. Her worry's are thoughts. Such as:

she

>is not going to pass 6th grade, I will forget to pick her up from school or

>that she might have something physically wrong with her. We could probably

>use bossing back techniques.

>Thanks

>jessie

March 5, 2000

Hi Joan,

Seth is only in pre-school, but he is learning the picture exchange system

and sign. Since Sept. he has learned signing for 4 things(only uses 2

consistantly) and with the pecs he is still on the object level and has

mastered the 5 out of 8 we are working on. I know he knows a lot more than

what he is showing, He also understands simple " commands " like ..give me....

NO...and come here. Although he only follows them when he wants to! From

what I have seen with the combo of pecs and sign, it has worked wonders for

the kids, most of whom have been with this teacher 2 years. Some, like Seth

who said no words 2 years ago are now saying whole sentences. Seth still

just makes growling sounds right now, so I'm hoping in a couple of years to

at least hear " MAMA " . That's my goal(although I will prbably get very sick

of hearing it all the time ) ). changing the subject, at church today I

saw a 4 year old boy with downs who was talking and interacting with everyone

....I wondered if that mother knew how lucky she was! In front of me were a

couple with a 6 year old autistic son, acting very autistic! I know people

thought the Downs was cute and the autistic kid was a brat, how unfair! I

didn't know which one to watch, one looked like Seth and the other acted like

Seth !!! I looked like Blair in the Exorcist! Wonder what people

thought about me!!! LOL

Gail, mom to Seth(4) jo(7) (9) (22) (24) grandma to

Errick(4) and wife to (my hero)

March 5, 2000

Joan,

JJ does have speech but......they only work on verbal speech. Have not seen

anything like picture exchange or anything else.

& Garry, parents of (9), (8), JJ (6), (5), and

Esther (3). All adopted & with Down Syndrome.

March 6, 2000

Interesting how different SLP's interprete speech. Elie is verbal, but not able

to express many non-concrete ideas. He also is very visual. The SLP has been

working with him on inputting visual (read PECS and other pictures) with words

to help him understand his world. She also works on articulation since I insist

and proper grammer when possible. (He still refers to himself in the thrid

person - this is a goal to eliminate.) But pictures and his use of them are the

mainstay of his speech.

Sara

>>> " Scherbert " <Scherb@...> - 03/06/0 1:23 AM >>>

From: " Scherbert " <Scherb@...>

Joan,

JJ does have speech but......they only work on verbal speech. Have not seen

anything like picture exchange or anything else.

& Garry, parents of (9), (8), JJ (6), (5), and

Esther (3). All adopted & with Down Syndrome.

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March 10, 2000

Hey

In my opinion chewing gum is GREAT exercise for the mouth, tongue and cheek muscles. I presume she doesn't swallow it! I had a thing about Hubba Bubble gum for a while during a very stressful time after Nicki was born, and my cheeks ached from chewing so much. Must be fantastic exercise - I felt like my face had done a 45 minute workout at the gym (not that I know what that's like......but I can imagine....can't I? LOL)

CarolynMum To on(8), (6 1/2), Emma (4)ds and Nicki (nearly 3)ds

Question

From: "Rusty and Medrano" <rmedrano@...>

I was wondering something. loves to chew gum. I was wondering if anyone might know if this is a good thing or bad thing? She does really well keeps it in her mouth and chews very well with it. Can it possibly help the speech. I do know this keeps her from eating alot to some of you that might have a child like mine loves to eat. I am just wondering . Mabey I am being parnoid. Thanks in advance

mom to 6 1/2(DS) and Dayton 21months(DS)

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March 11, 2000

LOL,Carolyn...... I not sure if I know what 45 mins worth in the gym feels like.....

No doesn't swallow the gum she does really well with it. Which suprised me. Oh the little bugger hates sweet so this is was what amazed me when she said more...lol go figure.

mom to 6 1/2(DS) and Dayton 21months(DS)

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Re: QuestionFrom: " tonycarolyn " <tonycarolyn@...>

Hey

In my opinion chewing gum is GREAT exercise for the mouth, tongue and cheek muscles. I presume she doesn't swallow it! I had a thing about Hubba Bubble gum for a while during a very stressful time after Nicki was born, and my cheeks ached from chewing so much. Must be fantastic exercise - I felt like my face had done a 45 minute workout at the gym (not that I know what that's like......but I can imagine....can't I? LOL)

CarolynMum To on(8), (6 1/2), Emma (4)ds and Nicki (nearly 3)ds

Question

From: " Rusty and Medrano " <rmedrano@...>

I was wondering something. loves to chew gum. I was wondering if anyone might know if this is a good thing or bad thing? She does really well keeps it in her mouth and chews very well with it. Can it possibly help the speech. I do know this keeps her from eating alot to some of you that might have a child like mine loves to eat. I am just wondering . Mabey I am being parnoid. Thanks in advance

mom to 6 1/2(DS) and Dayton 21months(DS)

-----------------------------------------------------Click here for Free Video!!http://www.gohip.com/freevideo/

http://DSyndrome.com/Multiples

March 24, 2000

Lori. I know how you feel. I walk around with a sense of sadness. When my

daughter makes it to school I feel better, when she doesn't I'm upset the

whole day. Each morning I sit on the edge of my seat- will she make it or

won't she? No one would know it- I put on a good front. The pain is quite

profound. I'm sure if I wasn't on St. 's Wort I would be very depressed.

I have made a vow to put the onus on her to get well. Whenver I have an

opportunity I ask her to behave in a responsible way because most of the time

she does not. This includes getting to school on time or she does not go, a

couple of chores, obeying punishments (very hard for her - she is

oppositional) and expecting her to act civilly in our household (she can be

volatile).

This is very different than the way she was in middle school- a straight

A honors student. We didn't put too many restrictions on her because she did

well in school. Unbeknownst to us, she was struggling with perfectionistic

OCD which explained the straight As. By high school, she got burnt out and

just began avoiding responsibilities. By setting these limits (and it is not

easy), I feel like she is learning a better mechanism of control- not by the

strict demons in her head. We are really a lot nicer than that slave driver

in her head. I hope the external structure helps her learn appropriate

limits- not too exacting but not too lax.

I hope this helps. Expect your daughter to begin helping herself.

Mamimiz

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