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Hi Jackie,

I am happy to do some scanning for you if you want to send some pictures to

me. If that sounds appealing, let me know and I'll give you my physical

address.

Casey, mom to (DS) and , 14 mo.

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Welcome, again, Jackie! If you want me to scan some pictures for you (free

of charge of course) you can send them to me at the following addy:

Sara Greenberg

PO Box 335

Amherst NY 14226

That goes for everyone on the list!!

Sara

--On Thursday, January 25, 2001, 12:07 PM +0000 jackievdb@... wrote:

> (Don't have a digital camera, but will try and figure something out

> to get pictures of our girls out there!)

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OK Sara, I'm looking for some good pics of all 4, I'll be mailing them

soon :)

Thanks!

Gail..........Bobby, Jillian, and Tara

{{{{{{{{{{{{{{{{{{{{{{{{{{GO GIANTS!}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

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Well.... you asked for it!!! :o) I never realized you guys never " saw " me!

Attached is a pic of me in Israel :o) and then there are more pictures of

me and my boyfriend Aref at: http://photos./aref_sara (we made

that album for his father, who lives in Lebanon).

Sara

--On Thursday, January 25, 2001, 11:17 AM +0000 Rrietmann@... wrote:

> Thanks for the scanning offer. I'll bet we would all love to see a photo

> of you--I know I would.

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My pleasure!!!!!!

Sara

--On Thursday, January 25, 2001, 11:15 AM +0000 lesfevr21@... wrote:

> Sara - I'm going to send you some today. I'm including a return envelope

> also. Thanks for being such a sweetheart.

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Good! I have always wondered what your beauties look like!!

Sara

--On Thursday, January 25, 2001, 1:21 PM +0000 PeggyLago@... wrote:

> oh thank you, Sara!!!!!!!!!!!!!!

> I have wanted to get pictures of my boys here too.....

> you will probably be hearing from me!!!

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Great Gail!!! It's about time !! :o) I bet your kids are soooo much bigger

now!!

Sara

--On Thursday, January 25, 2001, 1:18 PM -0500 GVanHouten

<rjvh@...> wrote:

> OK Sara, I'm looking for some good pics of all 4, I'll be mailing them

> soon :)

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Sara, you and Aref make a very nice looking couple.

The albums were wonderful, I enjoyed looking at all

your pictures.

I think you used to have a picture on your web site?

because I thought I had an idea of what you looked

like, and it was a pretty close match to your picture.

Thanks for sharing!

~, moma to (DS) & Sloan

--- Sara Greenberg <List@...> wrote:

>

> Well.... you asked for it!!! :o) I never realized

> you guys never " saw " me!

> Attached is a pic of me in Israel :o) and then there

> are more pictures of

> me and my boyfriend Aref at:

> http://photos./aref_sara (we made

> that album for his father, who lives in Lebanon).

>

> Sara

>

> --On Thursday, January 25, 2001, 11:17 AM +0000

> Rrietmann@... wrote:

>

> > Thanks for the scanning offer. I'll bet we would

> all love to see a photo

> > of you--I know I would.

>

>

>

>

> ATTACHMENT part 2 image/jpeg name=1Sara.jpg

__________________________________________________

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Hello :

My name is and I also have 3 children with OCD. Ian is 9 with OCD, ADD, mild Tourettes and depression. He tends toward meltdowns and also has a lot of sensory issues. His main o and c's involve symmetry and "evening up". Avery is 7 with dx of OCD and ADHD. She also has mild trichotillomania. Her main issues involve constant reassurance and list making. She may also have a math LD. Gracie is 4 with OCD and trich (in remission). She is also speech delayed. Her main problems centered around toileting issues and have recently been resolved with a script for Zoloft. I have just taken her off the meds 2 weeks ago and am waiting to see what turns up next. So far, we're seeing meltdowns over transitions and some clothing issues.

I believe that there is only one other member with 3 ocd kids and that is our Wonderful . She is one of the list moderators and I imagine you'll hear from her as well. I can certainly identify with your isolation and the craziness of your daily life. You have definitely found a group of "understanders"! This list has been a lifeline for me! It sounds like you're on the right track with the erp. You should have a unique perspective that should help your kids. I know we have a few other parents on the list who are ocd owners themselves.

Welcome to the group and we'll look forward to hearing more from you!

in TX

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HI :

Welcome to the list. YOu will find others here with more than one child

and other family members with OCD and other alphabet soup. Our son, Steve,

has OCD, MDD and PTSD-Type 1. He is doing very well after several years of

fairly intensive treatment plus a lot of changes in our household

operation. I have found that I have GAD myself which is also being treated

with meds and E & RP. This has brought Steve and me much closer as we

understand feeling sleepy on meds and how we have to boss back our

symptoms. He helps me often.

I am sure it will soon be this way for you and your kids. There are also

parents on here who can share about kids developing OCD overnight, which is

usually PANDAS (Pediatric Autoimmune Neurobiological Disorders Associated

with Strep).

Being on this list has helped my sense of isolation so greatly as we

struggled to find other people with OCD for Steve to meet so he did not

feel so different. Some parents homeschool their kids and some don't,

depending on the child and the family situation and the family's goals for

their child. Take care, aloha, Kathy (h)

kathyh@...

At 08:24 AM 02/01/2001 -0500, you wrote:

>Hello! I have shifted over from the regular OCD List. I have OCD, but I

>have learned how to manage it. The big news in our family is that this

>year we realized that all three of our children have OCD and one also has

>TS. I didn't know that I had OCD and some mild tics until our kids were

>diagnosed...I thought I was just depressed and weird. :) Our middle child

>has been " different " from the very beginning with sensory sensitivity and

>some other interesting " quirks, " and for years we thought she had allergies

>because of the sniffing and throat clearing which we now realize are tics.

>The OCD kicked in big time a year ago when she turned 10. Then three

>months later, our six year old, who had seemed perfectly normal, developed

>OCD overnight. They both have " evening up " and symmetry problems. My 15

>year old and my 11 year old have big time scrupulosity and some phobias.

>In a fantasy of fixing everything instantly and pretending it would all go

>away, we started the two younger ones on medication last summer. It did

>help some of the " neurological meltdowns " and general angst. Now we are

>accepting reality a little better and are venturing into E/RP. We are just

>getting the younger two evaluated next week. Our oldest is having much

>more trouble now....probably due to all of the anxiety in the house, and

>wants help, too. I am here because I find that it takes so much energy to

>try to explain to my friends how crazy our daily life is, and I feel

>somewhat isolated. My name is , and I can be reached at

>guenthers@...

>Glad to be among " understanders. " I should say that we have been

>home-educating our children all along anyway, and now we are so glad for

>it. Any other homeschoolers?

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Hi . My name is . I have two teens, an 18 yr old in 12th

grade with OCD and a non- specified diagnosis (NOS) and one without

OCD who is 15. We homeschool two classes and they go to

school for the others. Welcome to the list.

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HI !

We are also a multi-generational family with ocd. My mother in law has

symptoms, my husband and 3 kids all have ocd ++. I have siblings with ocd

symptoms which cause them distress, but not enough to interfere with their

daily living. My son, Tom, is now 17, daughters Adi and Ziv are 15 and 11.

Their father was the last to accept the diagnosis of ocd...

There is no quick fix, sorry! the kids will feed off each other, though!

Once we had Tom diagnosed, it was far easier to see why the girls were doing

certain things. The only way we could break the cycle, since professional

help was very limited, was to send tom out of the house. Once removed (he

was violent and refusing any treatment), we could then address the anxiety

the girls had and deal with it. We changed the style here to more structured

and therapeutic. We conduct ERP as a way of life, its not an effort. When

tom came back home, he was given conditions or he would be sent out again.

He must take medication and see a therapist, attend school, have a part time

job and follow our hourse rules. SInce he obviously wants to live here -

and especially since he sees how well his sisters are doing - he is managing

extrememly well. Tom has reduced his medication, is functioning

exceptionally well, making honour roll at school, working two part time

jobs, and has a social life!! He used to panic at the thought of taking a

bus - now its his independance!!

About friends and family. I like to use the 'need to know rule'. IF they

dont need to know what's going on, i dont say anything. Most people I meet

have really no clue what it means to live with ocd. Teachers can either be

very interested, or dismiss you as another crazy parent. friends will

either want to hear how you are doing, or move on to other people. Your true

friends will be there for you.

It is extremely important that you and the kids dad spends some time just

on self care!!! You are living under an extreme amount of stress. Dont

dismiss it, deal with it. Make priorities in your life that allow you time

alone, with your own friends and time together. It might be a good idea to

find yourself a therapist experienced with treating families with ocd.

and I (with multiples) really understand - so feel free to vent.

Other parents with similar difficulties really do know how you must be

feeling! Most of us go through a period of mourning when we learn of this

chronic disorder. Our kids will now have to deal with something for the rest

of their lives and we have limited control over it. My experience is that

the earlier treated, the more likely it becomes a way of life and they

handle set backs much faster. Adi is now med free and doing fantasically.

She knows that if necessary, she may need a med booster at some time in her

life. Her reduction is an incentive to the others to copy.

Well, I certainly have gone on long enough!!!

take care, wendy in canada

===============================================================

>Hello! I have shifted over from the regular OCD List. I have OCD, but I

>have learned how to manage it. The big news in our family is that this

>year we realized that all three of our children have OCD and one also has

>TS. I didn't know that I had OCD and some mild tics until our kids were

>diagnosed...I thought I was just depressed and weird. :) In a fantasy of

>fixing everything instantly and pretending it would all go away, we started

>the two younger ones on medication last summer. It did help some of the

> " neurological meltdowns " and general angst. Now we are accepting reality a

>little better and are venturing into E/RP.

We are just getting the younger two evaluated next week. Our oldest is

having much more trouble now....probably due to all of the anxiety in the

house, and wants help, too.

I am here because I find that it takes so much energy to try to explain to

my friends how crazy our daily life is, and I feel somewhat isolated. My

name is , and I can be reached at guenthers@...

>Glad to be among " understanders. " I should say that we have been

>home-educating our children all along anyway, and now we are so glad for

>it. Any other homeschoolers?

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

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  • 6 months later...

Hi, welcome to the family. I am ,mom to 7yr who will soon be

8 (DS) and Dayton 3yr (DS). Both are biological mine.

has been dignosed by 3 drs with ADHD. Which I been working hard on

behavior isses with. She loves to run and often. She takes off and gone

before a blink of a eye. She also is aggresive from time to time. We have

tried ritilian. That was some awful stuff for her body. We know have her on

Dexorstat 5mg and 2x day. So far it seems to be working really well. We have

our moments from time to time. The only side effect from this med is she

EATS ALOT which is usally. Will find out Monday if we are going to try

adderall. But have to say it is alot better than running after her and time

out all day. Also back in school helps alot.

She also has dysphagia,asthma,serva reflux,mild mitral value and a right

broch tube. We are going thursday morning for a endoscopy too see why and

how much inflammtion is done to the stomach and all.

Dayton also has DS along with dysphagia,reflux,ASD,and has had focal

seizures in past along with feeding tube ,malrotaion and appendix out. He is

doing great now and starting to really explore his world and he can be

aggressive from time to time. We are now starting to work with his behaviors

such as when he bangs his head. I pick him up take him to his room on his

bed for 3 mins. He will either stop or get it all out of his system. He just

also started a 3K program and is doing much better social.

Ok..I wrote a book huh??

Would love to talk more. Where are you from? Are the boys triosmy? Mine are

translocation 13/21.

Keep in touch.

, mom to and Dayton

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Hi and Welcome,

I have a also!! I am Kim and my kids are Abigail and , who has

Ds, who will be 4 in October and Mikayla who is 6. I am glad you found the

list. It is a nice place to listen, learn, and share with friends. Glad you

are here!

Kim mom to Abbi and Ds - 3 1/2 and Mikayla - 6

Hello!

> I am the mother of (6 Years) and (5 Years). Both of my

> children have Down Syndrome. Both have had ASD heart surgery and

> has Hirshsprungs Disease( a bowel disorder that has resulted in him

> losing 3/4 of his bowel) Both boys use PECS(pictures) to communicate and

> has some words. is still only eating pureed food

> although we are working on chewing. I am looking into intensive

> behavioral intervention(IBI) for both boys as they really need one on

> one intensive training in order to learn skills, follow instructions and

> play independently. I would be interested if there is anyone out there

> who has tried this as I am just setting up the program.Right now we are

> enjoying the summer and going swimming every day!

> Hutchison -Pauk

>

> http://DSyndrome.com/Multiples

>

>

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Hi ,

I too have 2 kids with Ds. Emma is 5 and Nicki is 4. We have 2 older

children too...on 9 and 8.

I would love to know how you are getting on with PECS. Emma's Speech

Therapist is very keen to get her started since she has very little speech.

Tony and I are reluctant to start since it sounds like a lot of work but we

are considering it since she will be starting school next year and it would

be nice if she could easily communicate with the other kids.

It was great to hear about your kids and look forward to hearing more.

Welcome aboard.

Carolyn

Mum to on, , Emma (Ds) and Nicki (Ds)

www.geocities.com/nz_mom/sykesfamily.html

Hello!

> I am the mother of (6 Years) and (5 Years). Both of my

> children have Down Syndrome. Both have had ASD heart surgery and

> has Hirshsprungs Disease( a bowel disorder that has resulted in him

> losing 3/4 of his bowel) Both boys use PECS(pictures) to communicate and

> has some words. is still only eating pureed food

> although we are working on chewing. I am looking into intensive

> behavioral intervention(IBI) for both boys as they really need one on

> one intensive training in order to learn skills, follow instructions and

> play independently. I would be interested if there is anyone out there

> who has tried this as I am just setting up the program.Right now we are

> enjoying the summer and going swimming every day!

> Hutchison -Pauk

>

> http://DSyndrome.com/Multiples

>

>

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Hi , Welcome to the list. I'm mom to

Landon (Ds) and Ashton. They are three year old

fraternal twins. We are from South Carolina. I'm also

a special education teacher and we are supposed to get

some training in PECS this year to use it with our

students who have Autism. I was in a practicum this

summer and the camp that I worked at was using PECS

with the students with Autism. It really worked

wonders with some of those students in a very short

time. I was very impressed with the program. I would

love to hear how your boys do with it. Again ,

welcome. I look forward to hearing more about your

family. mom to Landon (Ds) and Ashton 3 years

-- Tomas Pauk <tomas.pauk@...> wrote:

> I am the mother of (6 Years) and (5

> Years). Both of my

> children have Down Syndrome. Both have had ASD heart

> surgery and

> has Hirshsprungs Disease( a bowel disorder that has

> resulted in him

> losing 3/4 of his bowel) Both boys use

> PECS(pictures) to communicate and

> has some words. is still only eating

> pureed food

> although we are working on chewing. I am looking

> into intensive

> behavioral intervention(IBI) for both boys as they

> really need one on

> one intensive training in order to learn skills,

> follow instructions and

> play independently. I would be interested if there

> is anyone out there

> who has tried this as I am just setting up the

> program.Right now we are

> enjoying the summer and going swimming every day!

> Hutchison -Pauk

>

__________________________________________________

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  • 2 weeks later...

Hi

I have been using PECS for about 2 1/2 years. My one son

continutes to be nonverbal. However he can request what he wants etc.

using PECS. is learning to speak and read using PECS symbols.

The best web site on this is www.bbbautism.com where there is a review

on PECS. Many speech paths are learning this system. Good luck! (I think

it works better than sign which doesn't work at all if your child

doesn't imitate but even if he does he may not have the cordination to

make the sign well enough for people to interpret it. Also many people

do not know sign!)

Mom to 6years and 5Years both have DS and Autism

stephaniesmom200@... wrote:

>

> Hello ,

>

> Welcome, if you are new here ( I haven't seen your posts before). I

> can't

> say that I have any information on behavioral intervention, but wanted

> to say

> hello anyway. Can you tell me a bit more about PECS? I am interested

> in

> hearing more about that. will be 2 in November and has only

> about

> 8 words but uses them infrequently. Mostly she loves to babble and

> repeat

> sounds, but doesn't focus too much on trying to communicate verbally.

> When

> did you start the program your boys are using? I hope you find the

> information you're looking for from someone else on the list.

> Pictures are

> always wecome, if you have some you'd like to share.

>

> Casey, mom to (DS) and , 21mo.

>

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,

Thanks for the link and information about PECS. I read a bit and will do more when I have more time (it is midnight now!). I think to some degree they are using those ideas at 's group therapy. They have a stool with pictures velcroed (is that a word??)on. Each picture represents a song and the children take turns pulling a picture off and then the group sings the song. (A picture of a bus represents "The Wheels on the Bus, etc.) I will ask her speech therapist more about it next time I go with her to therapy. Thanks again.

Casey

Casey, mom to (DS) and , 21mo.

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Hi my boys both have trisomy 21 and are biologically mine. We live in

Barrie Ontario. I am often overwelmed by their health problems but most

of all I worry about their mental and social development. I wonder if

should be taking a drug to help him focus and calm down. He also

has terrible sleep disorder. I am thinking of putting both boys on the

casein gluten free diet which will be difficult as all wants to

eat is yogurt and he only eats pureed food. Have you tried it?

- Mom to 6 years DS_ASD and Matt DS_ASD

Rusty and Medrano wrote:

>

> Hi, welcome to the family. I am ,mom to 7yr who will soon be

> 8 (DS) and Dayton 3yr (DS). Both are biological mine.

> has been dignosed by 3 drs with ADHD. Which I been working hard on

> behavior isses with. She loves to run and often. She takes off and gone

> before a blink of a eye. She also is aggresive from time to time. We have

> tried ritilian. That was some awful stuff for her body. We know have her on

> Dexorstat 5mg and 2x day. So far it seems to be working really well. We have

> our moments from time to time. The only side effect from this med is she

> EATS ALOT which is usally. Will find out Monday if we are going to try

> adderall. But have to say it is alot better than running after her and time

> out all day. Also back in school helps alot.

> She also has dysphagia,asthma,serva reflux,mild mitral value and a right

> broch tube. We are going thursday morning for a endoscopy too see why and

> how much inflammtion is done to the stomach and all.

>

> Dayton also has DS along with dysphagia,reflux,ASD,and has had focal

> seizures in past along with feeding tube ,malrotaion and appendix out. He is

> doing great now and starting to really explore his world and he can be

> aggressive from time to time. We are now starting to work with his behaviors

> such as when he bangs his head. I pick him up take him to his room on his

> bed for 3 mins. He will either stop or get it all out of his system. He just

> also started a 3K program and is doing much better social.

>

> Ok..I wrote a book huh??

> Would love to talk more. Where are you from? Are the boys triosmy? Mine are

> translocation 13/21.

>

> Keep in touch.

>

> , mom to and Dayton

>

> http://DSyndrome.com/Multiples

>

>

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  • 2 months later...

In a message dated 12/1/01 8:40:16 PM Pacific Standard Time,

astreit@... writes:

> My name is and I am new to the list. We live in Kansas City,

> Missouri and I am just learning to make toiletries. I'd like to know how

> long the butters last. Such as Shea, Mango etc.

>

> Thanks! I'm glad to have found this list and can't wait to learn from

>

Hi ,

Shea Butter and Mango have a pretty long shelf life and are not prone to

rancidity. I would say at least a year or more. Also jojoba oil,

fractionated coconut oil are two other oils that have very long shelf life

and you don't need to worry too much about. Grapeseed oil, infused oils like

calendula, St. 's Wort, etc. will become rancid very quickly. Many

people use an antioxidant in their oils when they first receive

them--something like ROE or tocopherols (vitamin E). As with most

ingredients, keep them cool and they will last longer. I refrigerate many of

my ingredients.

Hope this helps!

Angie

The Herbarie

at Stoney Hill Farm

www.theherbarie.com

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  • 3 weeks later...

Hi Judi, Sara, and ,

Thank you for your Christmas cards. I am enjoying getting them from all over the U.S. I am very much behind this year; I think the reason I'm more behind this year, is that two weekends ago, I celebrated my BIG 50 birthday at a lodge with 40 friends and family and 11 children. Everyone rented rooms and there was a hot springs pool. It was beautifully decorated for Christmas; my dh provided a great meal and everyone had a fun time. Sara, your card is beautiful and brought tears to my eyes. We, who are Moms and Dads to our children, are so blessed to have such an advocate as you. I still hope to get cards out. Glad Sam and are doing well after their tubes and your picture card turned out very well.

Happy Holidays to all!

Love, Marcia

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Wow Marcia! A very happy and special brithday to you!!!!!!

I'll be turning the BIG 40 this April!

Your birthday celebration sounded perfect! You must have had a blast!

Thanks also for being on this list, I look to you often for advice and

such, first cause you are smart, level headed, and your twins resemble

my twins!!!! Ha!

Holiday cards!

Everyone, I know I was on the list, but ran out of my cards, think I

only could send out 5...........SORRY

I'll be better prepared for next year, BUT one thing I have to say is,

getting all these cards are cool, makes me want to meet you all in

person!!!!

Gail........Bobby 7 3/4, Jillian 5, and Tara{Ds}2yrs & 9mons.

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My whole family is enjoying receiving the Christmas cards. My girls can't wait to see the next one. Thanks everyone for sending them. mom to Amy 14, Kelsey 11, Davey (DS) 22 months and Will 22 months. Re: Hello! Wow Marcia! A very happy and special brithday to you!!!!!!I'll be turning the BIG 40 this April!Your birthday celebration sounded perfect! You must have had a blast!Thanks also for being on this list, I look to you often for advice andsuch, first cause you are smart, level headed, and your twins resemblemy twins!!!! Ha! Holiday cards!Everyone, I know I was on the list, but ran out of my cards, think Ionly could send out 5...........SORRYI'll be better prepared for next year, BUT one thing I have to say is,getting all these cards are cool, makes me want to meet you all inperson!!!! Gail........Bobby 7 3/4, Jillian 5, and Tara{Ds}2yrs & 9mons.

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Judi, Glad to hear that the boys tube surgery was a success. Wanted

to wish the boys a Happy Birthday just incase I don't get back online

for the next few days. I'm heading to Orangeburg tomorrow to visit my

mom. I cannot believe that they will be five! Where does the time go?

Happy New Year! mom to Landon (Ds) and Ashton 3

years

> Seems like this list is very slow! Must because of all of that

> holiday shopping you are all out doing - LOL!!!

> Sam and had their third set of ear tubes put in yesterday.

> We were at the surgi-center at 7am, they came for Sam at 8am,

> followed about 30 minutes later, and we were home at 10:30!! Had

> some lunch then Mike went to the golf course and I went to the

outlet

> mall!!! The boys conked out in their stroller so I had a rather

> enjoyable outing at the mall. I indulged and got a mocha-

frappuccino

> at Starbucks (yum, my favorite!). But, I forgot to ask for decaf.

> So, I was up until almost midnight last night wrapping christmas

> gifts and putting them under the tree. I'm tired now, but at least

> my gift wrapping is done - LOL!

>

> I just wanted to say " hey " and wish you all a very Merry Christmas

> and Happy New Year!

>

> Judi-Mom to Sam & , 5 in 8 days, can you believe it? I

> can't!!, Identical Twins/DS

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