Update on

[Guest guest]

maureen,

i feel so bad for you and your poor baby....you are in my prayers and i am sure

everyone else's too. keep your chin up...... your amanda is a fighter.... jeez

if i picture ashton in her place, ikess....... ashton is a cranky butt in the

hospital and to go through as much as amanda has this time, hopefully the ped

psych will respond soon, VERY SOON with something to help ease her frustration

and pain....... i hope the sun brightens for her soon......take care and hang in

there.....leah

[Guest guest]

Maureen,

supercalifragilisticexpalidociuos? I don't know what else to say other than

our hearts and prayers are with you all.

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

Errick(4) and wife to (my hero)

[Guest guest]

Maureen,

I know this if so differcult to go through. I feel so sorry for her, it

must be so confusing. Hug her for us and we will keep her in prayer.

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

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

---------

[Guest guest]

Many, many prayers for you and and family!!!! Sherry and

[Guest guest]

Dear Maureen,

My heart goes out to you and and what your all going through. It's

hard I know and I've been there before, but getting through it is all you can

think about. There are alot of people on this list pulling for and

hoping there are no more complications and a speedy recovery.

Hugs,

[Guest guest]

Hi ,

You, your precious little boys, and your family are still in my prayers for

continued recovery. Thank you for the update.

Marcia

Mom to Sara (DS) and 5 and Lucas 9

[Guest guest]

,

I am so glad your babies are doing better. Have a

restfull weekend.

Pam mom to Hannah and identical twins

--- Weber <sandraw@...>

wrote:

> Hi,

> First Thank you to all who are praying and thinking

> about us. Yesterday was so weird!! Thierry called

> the ICU and spoke to the nurse who was just so

> negative, that I called the boys Cardiologist.(she

> had said call any time). To make a long story short

> the Cardi felt things were better and just be

> patient??? Like Right!! Anyway this morning at

> 6:30am, I got a call from Dr. and is if

> the Vent. YES!!! is doing well. is

> starting to sleep again and we have changed his

> formula to Soy which seems to have helped for now.

> The only problem left is diarrhea from the meds I

> think. is on 5 meds now so who knows. Please

> keep praying. Thanks again and have a wonderful

> weekend, I know we will now.

> Hugs, Kisses and lots of warm fuzzy thoughts

> Sandy

> Mom to a lot including (Ds), (Ds) and

> 8 weeks

>

__________________________________________________

[Guest guest]

Sandy: Yay!! Off the vent!!! Great news. I know -

patience. Easy to say, hard to actually have. Believe

me, over the past 3 years, I've learned lot's of

patience! Mostly with dealing with doctors and such,

secondly with dealing with the kids.

I'm so happy that is doing better and everybody

at home is well too.

Judi-Mom to Sam & , 3, Identical Twins

--- Weber <sandraw@...>

wrote:

> Hi,

> First Thank you to all who are praying and thinking

> about us. Yesterday was so weird!! Thierry called

> the ICU and spoke to the nurse who was just so

> negative, that I called the boys Cardiologist.(she

> had said call any time). To make a long story short

> the Cardi felt things were better and just be

> patient??? Like Right!! Anyway this morning at

> 6:30am, I got a call from Dr. and is if

> the Vent. YES!!! is doing well. is

> starting to sleep again and we have changed his

> formula to Soy which seems to have helped for now.

> The only problem left is diarrhea from the meds I

> think. is on 5 meds now so who knows. Please

> keep praying. Thanks again and have a wonderful

> weekend, I know we will now.

> Hugs, Kisses and lots of warm fuzzy thoughts

> Sandy

> Mom to a lot including (Ds), (Ds) and

> 8 weeks

>

__________________________________________________

[Guest guest]

Hi ,

I've been playing catch up here. All of you are in

my thoughts and prayers. mom to Landon (Ds) and

Ashton 22 months

Rrietmann@... wrote:

> Hi ,

>

> You, your precious little boys, and your family are

> still in my prayers for

> continued recovery. Thank you for the update.

>

> Marcia

> Mom to Sara (DS) and 5 and Lucas 9

>

__________________________________________________

[Guest guest]

Hi Nikki,

Sorry to hear that had such a tough time at camp. I think it

bears looking into a little further on your part, maybe talk to some

parents of the other girls in her group?

About her recent behavior with the cat: Sometimes med changes,

especially if you are raising the dose rather quickly, can have

behavioral side effects. We had this experience with our daughter and

Prozac. She will have trouble with her impulse control during a

medication change. To offset this, we use liquid Prozac in order to

make dosage increases very slowly.

Take care, hope things continue to improve,

Lesli

ANGELO5@... wrote:

>

> Hello everyone! Ive been quiet for awhile but have enjoyed reading everyones

> letters. I wanted to update everyone on my 10yr old. She went away to

> camp last week with our church for a district camp that she has been to for

> 4yrs now. Its M-F and its a sleep over camp. She cant call home (291 children

> calling home would be caos) and I just asumed she was having a great time

> like every other year. When Friday came and I drove up to pick her up I could

> tell something was really wrong before I even stopped my van. She walked over

> to me and before a hug or anything started talking a mile a minute about

> everything at once and even throwing in things that had taken place before

> she ever left and she was talking like I didn't know that these things had

> taken place. One of the counselors from our church came up to me and said she

> had a very ruff week and she was very concerned about her and checked on her

> often but that Tiff was not in her group. Tiff said that she had an awful

> counselor that was very mean and stern and no fun. The group that she was

> with were girls all from the same church and one of the girls mom was their

> couns. Now is known by how she makes friends wherever we go I dont

> care where it is she finds a friend but this week was different she did not

> feel that she fit in and felt very uncomfortable around this lady and the

> camp director would not switch her to another group she said that there was

> no place to put her that they actually had to turn some away because of no

> beds. So anyway I got her home and I was very concerned because she seemed

> very much not herself. I was concerned about meds, maybe side effects I dont

> know. She takes 50mg of Luvox 2xdaily and 100mg of Wellbutrin 1xdaily. So I

> gave it until Monday but she told me she didnt feel herself she felt very

> irritable and anxious and it showed very much in her mood and behaviour she

> was very different. Monday I called the pyschiatrist and he said to increase

> the Wellbutrin to 2xdaily and see if that helped so we started that last

> night and she had a pretty good day today. Except she put the cat into her

> bearded dragons 55gal tank (without the lizard in it thank goodness) I asked

> her why she did that and she said that she had the urge to do it and I talked

> to her about bossing back that urge. Im wondering if her Luvox is not high

> enough, if anyone has input about that please let me know. Everything was soo

> good for those few weeks there and then boom it starts back again and it

> really has me feeling depressed this week. Ive done alot of self talk to help

> my mood and not let her ocd boss me around and affect my family anymore than

> it already has. Thank goodnes Tiff is being pretty good to her little sisters

> right now. Well thanks for letting me vent and share. Any feed back on the

> meds would be appreciated. God bless you all. Nikki

>

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[Guest guest]

HI Nikki:

Thanks for the update on . Although it sounds like she had to deal

with some tough circumstances at camp she did make it through the whole

week. We send a strong, positive message of confidence in our kids when we

send them off on their own> had to deal with lots of difficult

things like other mom's showing preference for their kids and maybe not

being the most effective counselor that can help her.

Do you think that her meds are still being effective for her depression?

The symptoms you describe are ones I have learned that, for our Steve, mean

that depression is increasing. The irritability and sense of not getting

along with others and not fitting in are things I have become pretty

familiar with when Steve's depression gets stronger.

He is also on Luvox, now 200 mg and on the way up to 300 mg. It is already

effective against his depression, he has been so witty and funny this week,

enjoying life and not making the cutting, biting witty comments he does

when he is depressed. It seems that 's doc is addressing the

symptoms of depression by increasing the Wellbutrin. YOu may want to talk

with the doc about increasing the Luvox to help with her OCD symptoms.

Good luck, take care, aloha, Kathy (H)

kathyh@...

At 11:02 PM 07/18/2000 EDT, you wrote:

>Hello everyone! Ive been quiet for awhile but have enjoyed reading everyones

>letters. I wanted to update everyone on my 10yr old. She went away

to

>camp last week with our church for a district camp that she has been to for

>4yrs now. Its M-F and its a sleep over camp. She cant call home (291

children

>calling home would be caos) and I just asumed she was having a great time

>like every other year. When Friday came and I drove up to pick her up I

could

>tell something was really wrong before I even stopped my van. She walked

over

>to me and before a hug or anything started talking a mile a minute about

>everything at once and even throwing in things that had taken place before

>she ever left and she was talking like I didn't know that these things had

>taken place. One of the counselors from our church came up to me and said

she

>had a very ruff week and she was very concerned about her and checked on her

>often but that Tiff was not in her group. Tiff said that she had an awful

>counselor that was very mean and stern and no fun. The group that she was

>with were girls all from the same church and one of the girls mom was their

>couns. Now is known by how she makes friends wherever we go I dont

>care where it is she finds a friend but this week was different she did not

>feel that she fit in and felt very uncomfortable around this lady and the

>camp director would not switch her to another group she said that there was

>no place to put her that they actually had to turn some away because of no

>beds. So anyway I got her home and I was very concerned because she seemed

>very much not herself. I was concerned about meds, maybe side effects I dont

>know. She takes 50mg of Luvox 2xdaily and 100mg of Wellbutrin 1xdaily. So I

>gave it until Monday but she told me she didnt feel herself she felt very

>irritable and anxious and it showed very much in her mood and behaviour she

>was very different. Monday I called the pyschiatrist and he said to increase

>the Wellbutrin to 2xdaily and see if that helped so we started that last

>night and she had a pretty good day today. Except she put the cat into her

>bearded dragons 55gal tank (without the lizard in it thank goodness) I asked

>her why she did that and she said that she had the urge to do it and I

talked

>to her about bossing back that urge. Im wondering if her Luvox is not high

>enough, if anyone has input about that please let me know. Everything was

soo

>good for those few weeks there and then boom it starts back again and it

>really has me feeling depressed this week. Ive done alot of self talk to

help

>my mood and not let her ocd boss me around and affect my family anymore than

>it already has. Thank goodnes Tiff is being pretty good to her little

sisters

>right now. Well thanks for letting me vent and share. Any feed back on the

>meds would be appreciated. God bless you all. Nikki

[Guest guest]

Nikki,

You wrote: >Everything was soo good for those few weeks there and then boom

it starts back again and it really has me feeling depressed this week. Ive

done alot of self talk to help my mood and not let her ocd boss me around

and affect my family anymore than it already has.<

GREAT! Remember those tiny 'turtle' steps? Try thinking back just months

ago when an event like this would have been so overwhelming, and now you

have handled it like a pro! Allowing yourself to feel sad for this hiccup is

alright - we can express our emotions, eh?! I am proud to see how you have

stopped letting the ocd boss you around!

We had a similar experience with Ziv and camp. She met us at the gate

and demanded to go home NOW! She couldnt articulate all the thoughts that

were going through her head at the time but made it clear that the farther

away from the camp the safer she would feel! This was a camp that we had

worked at, so she knew most of the staff and her way around. Her counsellors

were very good and we checked in with them regularly (it helps to be

insiders!). I wouldnt get into all the things that might have happened -

camp was done! We moved on.

About the meds, its so hard to say one way or the other. Follow your

instincts on this one!

wendy, in canada wb4@...

________________________________________________________________________

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

[Guest guest]

Hi all,

Just had to throw in our " victories " around summer vacations. (almost

14) flew from Chicago to No. Carolina BY HERSELF (a direct flight) to visit

cousins for 10 days before we drove down and joined her. And then she flew

home alone as well! (we picked her up in Chicago as we drove back to

Wisconsin). She is quite proud of herself, and so are we. She had her ups

and downs with the visit-----she is so bossy and chatty that she sometimes

drives the other kids (cousins) away. And the whole while she is complaining

how rude and mean everyone is to her.

The other good news is that my husband and my other daughter, (almost

11) and I had a much needed break from OCD; I found that I do have energy to

accomplish things again, and have felt much better dealing with since

that break.

And " re-entry " , as we call it (returning home after excitement) has been

going as well as could be expected...... a little rough on getting to bed in

her own room (instead of being able to sleep with cousins etc.)....but all in

all, not bad.

I have been enjoying catching up on all the posts from all of you; I am

amazed at how helpful every entry is...... in either helping me not feel

alone with parenting a child with OCD, or in another good idea to try, or

discussing med changes and side effects. Thanks to all of you!

Take care,

Laurie in Wisconsin

[Guest guest]

HI Laurie:

Thanks for sharing 's victory flight and trip with us. It is

wonderful when our kids do something difficult and it works well and gives

them a tremendous boost. Sounds like she did some major league bossing.

You must be very proud of her.

Also you did such a good job of getting an OCD-free vacation. and I

had a kid-free and OCD-free vacation of two weeks and it really put me back

on my feet again. Take care, aloha, Kathy (H)

kathyh@...

You wrote:

Hi all,

Just had to throw in our " victories " around summer vacations.

(almost 14) flew from Chicago to No. Carolina BY HERSELF (a direct flight)

to visit cousins for 10 days before we drove down and joined her. And then

she flew home alone as well! (we picked her up in Chicago as we drove back

to Wisconsin). She is quite proud of herself, and so are we. She had her

ups and downs with the visit-----she is so bossy and chatty that she

sometimes drives the other kids (cousins) away. And the whole while she is

complaining how rude and mean everyone is to her.

The other good news is that my husband and my other daughter, (almost

11) and I had a much needed break from OCD; I found that I do have energy

to accomplish things again, and have felt much better dealing with

since that break.

And " re-entry " , as we call it (returning home after excitement) has been

going as well as could be expected...... a little rough on getting to bed

in her own room (instead of being able to sleep with cousins etc.)....but

all in all, not bad.

I have been enjoying catching up on all the posts from all of you; I am

amazed at how helpful every entry is...... in either helping me not feel

alone with parenting a child with OCD, or in another good idea to try, or

discussing med changes and side effects. Thanks to all of you!

Take care,

Laurie in Wisconsin

[Guest guest]

I did put 's speech on hold until we leave. His teacher called and said

she was resigning (she's got a toddler that apparently has problems medically,

but we didn't discuss it, she just said health reasons - she's also a military

spouse and they're leaving soon too). I was getting tired of driving to

the school for 30 minutes (meaning I couldn't go anywhere else during that time)

and trying to entertain was getting harder. That helps a bit, not being

so rushed on Wednesday (we had 30 minutes from when we get back from my Bible

study to eat lunch - all 3 of us - before we were leaving for speech).

Loriann, who is SO TIRED of Land Before Time this morning....

Wife to Dewight

Mom to , 10 years, Down Syndrome, Autistic Spectrum Disorder, ADHD,

Oppositional Defiant Disorder

And , 16 months and Strong Willed

[Guest guest]

so lori, you have put both boys on the gluten free diet????? how about you

and hub are you gluten free too......is it a family affair??????just

curious.....where in the heck to you find all your time......since going back

to work, i feel like a chicken with my head half screwed on backwards:-)

between doing ashton's daily picture schedule(WHICH THE SCHOOL SHOULD DO) for

school, lunch room, and home meals and activities, i am tired!!! thats just a

part of the day....heheeh good lucka nd i am glad dereks doing better

[Guest guest]

its weird how the little things effect our kids soo greatly, prayers that the

gf keeps going well.

[Guest guest]

It wouldn't be so bad if it was all the Land Before Time videos in order, but he

wants to watch #2 over and over and over and over, ad nausium.

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, Autistic Spectrum Disorder, ADHD,

Oppositional Defiant Disorder

And , 16 months and Strong Willed

[Guest guest]

lol, land befor time huh, here its usually the muppets, but since wed, its

been toy story 2, he got it after special oympics for being such a good boy

no trantrums. particiapatied well. shawna.

[Guest guest]

We watch all 6 land before time movies, and any other disney that she feels

like at the time. Luckily we've finally out grown Barney!

Re: Update on

> lol, land befor time huh, here its usually the muppets, but since wed, its

> been toy story 2, he got it after special oympics for being such a good

boy

> no trantrums. particiapatied well. shawna.

>

>

>

>

>

[Guest guest]

Well, he's talking my ear off, in his language - so I don't understand half of

what he's saying. He knows, but it frustrates both of us when he can't get me

to understand. He's a bit hyper, but I haven't seen an increase in the stimming

yet. He still likes to line things up (I just can't see that as related to

celiac, so I don't know what to think). He is back to the everything is too

loud. He's whispering today, and panics every time he hears me punch numbers

into the microwave, reminding me that the last long beep to say it's done is too

loud for him. He hasn't complained of a tummy ache for a while.

I put his " daily required " dose of gluten powder in a Molly McButter Garlic

shaker with some of the garlic powder. Then I let him shake it on his spaghetti

(rice noodles) and in his cheese dip for his chips.

Right now he's off to see the new Rugrats Movie with his therapist. She didn't

come yesterday just so she could take him tonight. Of course DH had to throw a

fit. She ran into traffic and got here a little late, and it's going to be a

rush to get there on time. played his typical game, I'm gonna be shy, yes

I wanna go, no I don't, until Dad jumped up and swatted him. Great way to send

him off on a " date " away from mom and dad.....

Thanks for asking....

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD, possibly to lose all but DS and gain

Celiac

And , 17 months and Strong Willed

[Guest guest]

Dear Sue

My deepest sympathy is with you and your family. I am sorry that your time

with was so short. I hope you find the strength to get through this

really tough time!

Love

The Sykes Family in New Zealand

[Guest guest]

Lori,

How come you had to give gluten powder on 's foods. It sounds like

your giving the same food that you've been giving him for 10 months.

That's good that his behavior is evening out. I hope that you fine with all

the doctors, etc. visits. So maybe has other problems besides Autism?

I know someone that has ADHD, I can give you their e-mail if you want to

contant them or their parents, and talk about rasing a kid with ADHD; so you

know what to go though. Theirs different types of autism, from sereverly

autism to mild cases of autism. I've babysat a kid and he was like a normal

kid, untill the parents took me home and said that he had autism. He was

like 10 years old.

From,

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

A beautiful family, So glad to here the baby is home all those handsome young

men to be met by a beautiful little sister to love and protect.

Carolyn - Mom to Darran 18

Update on

was born on Monday, 22 Jan 01. She had some complications and spent 11

days in the NICU at Children's Hospital in Oklahoma City. She finally came home

last Thursday. I have added her pictures and a brief update to her website.

Thank you for all the thoughts and prayers. They worked because our baby girl

is at home with us!!

http://www.geocities.com/ashleyspop/

Take a look and sign her guestbook..........

Mac

[Guest guest]

Glad she is home!!!! and what a darling baby... brings back memories of my son

with those little oxygen prongs.. it's so great when you can see their little

face without them!!

Shar