New here

May 8, 2001

Hi, Anne!

Welcome to the group. My name is Jackie. I have four girls, Liz

(14), Leanne (3), and and Amber (DS) (17 months). I did not

know that Amber had DS until she was born. However, I did suspect

something was not quite right about 2 weeks before they were born.

(They came at just shy of 34 weeks.) Amber was not moving much.

Only half of my very big tummy kicked and squirmed. I became

concerned and went to the hospital. Everything checked out okay

except that Amber did not respond to sugar stimulation with a rise in

her heart rate. I guess I should have pressed for more information,

but I was just relieved that the babies were not in distress.

My delivery (C-section) went picture perfect. The girls did fine at

34 weeks.

I am glad that you found this group. You will find a lot of support

from all of us. Good luck with the remainder of your pregnancy. Get

lots of rest because those little ones will keep you busy snuggling

with them (not to mention feeding and changing them too!) I would

not give it up for the world!! There is nothing like having

multiples - more hugs and kisses than you could ever imagine! Oh and

when then crawl, run, creep, etc. to you full of excitement to see

you again after you have been gone for a few hours -- there are no

words to describe the wonderful feeling of seeing those loving faces

joyful that you are their mom!

Keep in touch through the rest of your pregnancy as you can. Ask

questions, most of us have been where you are now and may be able to

help with suggestions/answers.

Congratulations on being a (soon to be) new mom of twins!!

Jackie

Mom to Liz, Leanne, and Amber (DS)

May 8, 2001

WElcome Anne, you're at the right place, and I think lucky to be here

soo soon! I'm Gail, Mom to four, Bobby 7, Jillian 4 1/2, and my boy/girl

twins, and Tara, Tara has Ds, doesn't, they just turned two in

March. I didn't know during my pregnancy, so we had a great shock at

birth, which I feel, at the time took away from .........If you know

what I mean.......anyway, Tara is doing well, started crawling at 12

months and started walking at 23 months, she does mostly everything

does, just a little slower, they eat-drink-and sleep together, I believe

that helps her along, she's a better eater that .........anyway, we

are from New Jersey......you'll find a great group of loving Mom's{and

other's} here on this list, so fire away with your questions........

Gail

May 15, 2001

Welcome to ALL new members! This list grows and grows

everytime I get on here. This list is a great group of

people!

My name is and I have 3 year old boy/girl twins.

(DS) and Sloan.

I have not been around too much lately. We are

battling the sinus problems with Vinnie again, he has

an ear infection this time. He gets sick about every

three months. I spoke with the Dr. about allergies and

they won't do anything until he turns 4. I forgot to

ask about tonsils and adnoids, I will when we go back

June 1st for a re check on his ears.

I look forward to hearing more about all the new

members and their families.

~

__________________________________________________

May 15, 2001

Welcome back !!

Sorry to hear about Vinnie! I hope he's feeling better soon! What was the

reason for waiting on the allergy testing until Vinnie is 4??

Cheers!

Sara

--On Tuesday, May 15, 2001, 12:31 PM -0700 <marystwins@...>

wrote:

> Welcome to ALL new members! This list grows and grows

> everytime I get on here. This list is a great group of

> people!

>

> My name is and I have 3 year old boy/girl twins.

> (DS) and Sloan.

>

> I have not been around too much lately. We are

> battling the sinus problems with Vinnie again, he has

> an ear infection this time. He gets sick about every

> three months. I spoke with the Dr. about allergies and

> they won't do anything until he turns 4. I forgot to

> ask about tonsils and adnoids, I will when we go back

> June 1st for a re check on his ears.

>

> I look forward to hearing more about all the new

> members and their families.

>

> ~

>

> __________________________________________________

>

June 25, 2001

In a message dated 6/25/2001 8:07:49 AM Pacific Daylight Time,

sawalter@... writes:

> Right now with his behavior I spend my days trying to at least keep up with

> him to keep him from getting hurt! He is very very active and becomes very

> very angry. He will not eat except he does love green beans and potato

> chips.

Lee Ann:

This is a problem we have faced with Ray for years even before the

autism symptoms occurred. Ray was on medication for ADHD

(hyperactivity) and it needed to be in his system before he could calm down

enough to eat. On the other hand, it could effect his appetite. I took his

meds with me to wake him up in the a.m. and gave him Boost which comes in

many flavors, he liked Strawberry. I would also put string cheese and/or a

danish that he could munch on between movement. I then gave him breakfast

about a half hour or more. Sometimes he got that in school.

He was underweight until puberty and then I could not keep him in clothes.

He went up to around 140 between 14 and 16 and has now come back to 124.

I am going to try to think about some of the other ideas we tried. If I

remember more I will post for you.

Peggy

June 25, 2001

the vaccination mmr issue is a tuff one, nathan has

had all of his immunizations and plus some others reg

kids dont usually get. I attribute his autism more to

virus and antibiotic areas of concern. But i may be

way off, its usually individual, but as a parent you

are the only one who can make the choice for your

child and that choice is whats best for you and her.

As for the bed issue we got a vailbed, my son nathan

9yrs w/ds, pdd, add/hd, ocd, has been ruff on it but

unable to brake it and we've had it for around 5yrs

now.It was a real life saver. As for the behaviors one

can use behavior management or meds or as many of us a

combo of the two. is a headbanger, biter,

himself and others, spitter, breaks valuables, door

slammer repeatedly and light switch flipper. But with

great behavior management team and the right meds he

does these things only on seldom occasion anymore. We

have a lot of eating issues too, mainly to do with

textures,causing him to gag often and choke some or

spit up , very finike, and then will indulge in huge

quanities too, (siety issues) causing him to gain too

mauch weight in short intervals, His current meds seem

to help greatly in the appetite area. Its great

meeting you, look forward to hearing more. shawna, mom

to nathan 9yrs w/ds, pdd, add/hd, ocd, and nicholas

8yrs, about to pass level 3 swimming lessons, yaaa.

__________________________________________________

June 25, 2001

Hi Lee Ann and welcome!

was born prematurely and he had a duodenal atresia which had to be

repaired surgically. He had an NEC (necrotizing entero-colitits) infection post

surgery and it took him some time to recover so he was underweight for the first

several months. After that, he actually gained pretty well and was probably at

least average, if not above average, for the DS growth chart. Although he

always was a " spitter-upper " (he was diagnosed with reflux at about 6 months),

it gradually got a lot worse and he started actually vomiting all the time by

the time he was about 15 mos. By the time he was 20 months, he looked emaciated

and was admitted to Childrens Hospital. He was there for almost 2 months and

had three surgeries. When he was released, he had a g-tube, a j-tube and was on

a high-nitrogen formula by enteral feeds only 21/24 hours per day. By the time

he was 3, we were able to use the g-tube for feedings only and eventually we

were able to switch him to Pediasure. One of the reasons I bring all this up is

that you mentioned that is small even for the DS growth chart. I'm

wondering if his doctor has ruled out any gi problems? In addition to the

vomiting/reflux issues, has chronic constipation from the time he was a

baby. The doctors ruled out Hirschsprung's when he was 2. The other question

was regarding the MMR. did have the MMR when he was 15 months. Whether

it added to his problems, I don't know. As I look back, did have some

autistic behaviors and tendencies from the time he was a baby. He did start to

develop speech and was doing ok developmentally, given the DS. He started to

regress obviously after he was 2. Coincidentally, his hospital stay was right

before his 2nd birthday and we assumed (and the doctors agreed) that his

regression was due more to trauma from the multiple surgeries and various

procedures.........it wasn't until he was about 6 and had REALLY regressed (lost

speech entirely, had self-injurious & aggressive behaviors, self-stimmed all the

time, etc) that we finally got the autism dx. I have thought for years that at

least part of the regression was related to nutritional issues with respect to

the high-nitrogen formula that he was on. There is no question that it was a

life-saver, literally, but I think it was lacking in what he needed

developmentally. If I had it to do over again, I would probably go ahead and

give him the MMR. By the way, one of 's missions in life is to knock my

lamps over! We buy lamp shades every few months and my touch lamps don't come

on when you touch them anymore! LOL

Terry

new here

Hello,

I am new here. I am the mom of 5 children. Our youngest 3 are adopted.

will be 18 soon, Krystle is 16, Caleb is 4, is 4 and has DS,

is 34 months and has DS, F.A.S., was born addicted to crack and had

meth in his system, possible Autism. We have suspected he was not a

" normal " DS kid because of his behavior so we did the E2 and he came back

with a +8 which put him into the Autistic category. I was somewhat

surprised by that. I knew he had issues but did not know to what extent.

Because he is so young I have had a difficult time getting the doctor to

listen.

We are having a difficult time right now. His growth has fallen completely

off of the normal growth chart and has fallen from the 50% curve on the DS

chart to 25% and below on the DS chart this past year. He is getting sick a

lot too. I have added Pedia Sure to his diet. At least that is something

he will drink. I am really worried. We are trying to get into the DS

clinic here in our state but they are booked into September. I gave our

Pediatrician a call, one we used to see, they are going to try to get him

in. I am really struggling with what is going on here. Trying to find the

help he needs.

The other issue I have to deal with is the MMR vaccination issue. I do not

want him to have that vaccination. He tests in the Autistic range already

and I do not want to take a chance with the MMR. Any help, thoughts, or

ideas?

Right now with his behavior I spend my days trying to at least keep up with

him to keep him from getting hurt! He is very very active and becomes very

very angry. He will not eat except he does love green beans and potato

chips. He will eat meat, especially salty meat like sausage or hot dogs.

He has a bed with a crib tent on it but he is destroying it. He is 33 1/2

inches tall and 24 pounds but he is strong enough to open doors and climb 5

foot high gates! He says NO, DON'T, MORE, and BOB (Bob the tomato in Veggie

Tales) He has also found a new activity of hitting himself in the head. He

thinks it is very funny. I always wondered why he would knock my lamps off

of the end table over and over again. I guess I know why now!

Lee Ann

June 25, 2001

Hi Terry,

Sounds like had a rough start. was 6 weeks early and was in

the hospital for 3 weeks. He started out on a respirator. He was in really

bad shape. But he did progress and did well for the first year. He did go

through with draw. The doctors did not expect him to live let alone do

fairly well.

One of the reasons I bring all

> this up is that you mentioned that is small even for the

> DS growth chart. I'm wondering if his doctor has ruled out any

> gi problems? In addition to the vomiting/reflux issues,

> has chronic constipation from the time he was a baby. The

> doctors ruled out Hirschsprung's when he was 2. <

We are checking for Celiac. has pretty chronic diarrhea. Reflux has

not been a problem for Josh.

> The other

> question was regarding the MMR. did have the MMR when he

> was 15 months. Whether it added to his problems, I don't know.

> As I look back, did have some autistic behaviors and

> tendencies from the time he was a baby. He did start to develop

> speech and was doing ok developmentally, given the DS. He

> started to regress obviously after he was 2. <<

The vaccination issue is a very frustrating one for me. I see reasons to

give the MMR and reasons not to give the MMR. Ugh!

> Coincidentally, his hospital stay was right before his 2nd birthday and

we assumed

> (and the doctors agreed) that his regression was due more to

> trauma from the multiple surgeries and various

> procedures.........it wasn't until he was about 6 and had REALLY

> regressed (lost speech entirely, had self-injurious & aggressive

> behaviors, self-stimmed all the time, etc) that we finally got

> the autism dx. I have thought for years that at least part of

> the regression was related to nutritional issues with respect to

> the high-nitrogen formula that he was on. There is no question

> that it was a life-saver, literally, but I think it was lacking

> in what he needed developmentally. <<

I was shocked to find out that things like Failure to Thrive and Autism are

things that appear as the child leaves infancy. I just assumed you would

see these problems early on.

> If I had it to do over again, I would probably go ahead and give him the

MMR. By the way, one

> of 's missions in life is to knock my lamps over! We buy

> lamp shades every few months and my touch lamps don't come on

> when you touch them anymore! LOL

Oh my! I now just what you mean. I had to put a gate around a lamp we have

so would not ruin it. I have lost 3 lamp shades and one whole lamp.

He has broken the gates that keep him where I want him............. I am

finally adjusting to the fact that this is my life. I have given up hope

that things will change any time soon.

Lee Ann

June 25, 2001

thanks Peggy,

Any ideas will help. Is anger a common thing with kids who have Autism? I

am very sure it is not a DS thing. At least I have not seen it in our

daughter who also has DS.

Lee Ann

June 25, 2001

> the vaccination mmr issue is a tuff one, nathan has

> had all of his immunizations and plus some others reg

> kids dont usually get.<

We have done all of them up to the MMR with . Even the Chicken Pox

and flu. I am just learning of the MMR-Autism possibility.

> I attribute his autism more to

> virus and antibiotic areas of concern. But i may be

> way off, its usually individual, but as a parent you

> are the only one who can make the choice for your

> child and that choice is whats best for you and her.

> As for the bed issue we got a vailbed, my son nathan

> 9yrs w/ds, pdd, add/hd, ocd, has been ruff on it but

> unable to brake it and we've had it for around 5yrs

> now.It was a real life saver. <<

We are working on getting a bed for . Our insurance said it considers

it a piece of " furniture " . Well, I am not sure who decorates the insurance

persons home but I for one do not consider an enclosed bed a piece of

" furniture " Is there certain wording to use with the insurance company to

get them to cover it? Rather than " bed " ?

>As for the behaviors one

> can use behavior management or meds or as many of us a

> combo of the two. is a headbanger, biter,

> himself and others, spitter, breaks valuables, door

> slammer repeatedly and light switch flipper. But with

> great behavior management team and the right meds he

> does these things only on seldom occasion anymore. We

> have a lot of eating issues too, mainly to do with

> textures,causing him to gag often and choke some or

> spit up , very finike, and then will indulge in huge

> quanities too, (siety issues) causing him to gain too

> mauch weight in short intervals, His current meds seem

> to help greatly in the appetite area. Its great

> meeting you, look forward to hearing more. shawna, mom

> to nathan 9yrs w/ds, pdd, add/hd, ocd, and nicholas

> 8yrs, about to pass level 3 swimming lessons, yaaa. <<

Some of this sounds familiar. Especially the light flipper. Off-on

off-on.........Our daughter who also has DS really gets upset with

him!

Lee Ann

June 26, 2001

It took over a year to finally get our insurance to

pay for nathan's vailbed,they kept saying denied

pending further info,our specialty peds wrote them a

nasty letter and that was the real kicker,lol, Its

considered medical equipment not furniture, it is

mainly used to prevent all the nighttime wanderings,

and they can special make any of the vail for feeding

or iv tubeing ect, it even has a slot on both sides

for a foley bag, also its padded everywehre, so he can

head bang all he wants or if has seizures whatever he

is safe in there, he just would get netting marks on

his head and upper back occasionally if did this alot,

we are down to needing the bed with the side rails,

with years of wander management he did learn not to

wander around or leave the house at night so we

removed the vail, but do have it in safe keeping in

rubbermaid for any future needs. You may even be able

to go through a medical loan closet they may have a

similair type of bed to use, or check around for any

grants you may be able to receive for it. shawna.

__________________________________________________

June 26, 2001

Does any one know where I can find a double stroller that can handle over

100 pounds? We have a double stroller with who has DS at around 40

pounds

and who has DS at 24 pounds, the wheels are bending. It is not a

huge problem

right now but by next summer I am sure we will need something that can

handle some weight. I know I could get a special single stroller but I have

not seen any in the double style. I anticipate having to have both kids in

strollers for a while. Especially when we go out to a place like Cedar

Point or to the zoo or even shopping at the mall. For some reason they love

to RUN!

Lee Ann

June 26, 2001

In a message dated 6/25/01 8:08:00 AM Pacific Daylight Time,

sawalter@... writes:

<< Hello,