Introduction

[Guest guest]

Welcome ! My son is also 8 years old and at times displays various

types of behaviors. He has the normal behaviors, the getting sick

behaviors, the otitis media behaviors, the overstimulated ones and the plain

ole Chucky like behaviors (usually a combination of the above!). He also

developed seizures last year and during the medication adjustments, was just

a handful. I suspect we will have to up his medication this week He had

another seizure last night..the first one while he was awake. We go to the

DS doc this week..yearly appointment.

You could be right about the apnea...have you had him checked out yet? I

would think if he got more sleep, you'd see less behaviors.

Again, welcome and I hope you enjoy this list as much as I do!

[Guest guest]

Hi - I'm , too......I have a son with DS, Jimmy, who is 10 years

old.  He was also diagnosed with ADHD when he was 5 years old - not so much

for hyperactivity - more a problem with impulsiveness and inattention.  He

does not have any autistic tendencies or ODD - but he does have a stubborn

streak a mile wide and behavioral " issues " that have been very problematic in

the past.

He currently takes dexedrine 7.5mg three times a day for the ADHD.  This

helps him greatly with the impulsiveness.  We have tried ritalin (he got

quite aggressive) and adderall (he sat under his desk and

giggled)......dexedrine has been the only thing that really works for him.

 He has been on the same dosage since kindergarten.  He is 52 inches tall and

weighs 67 lbs.

Jim is also a very active sleeper - thrashes around a lot and frequently when

I go in to wake him up in the morning he is sleeping jacknifed in half.  I've

often wondered if he has sleep apnea, but every time I've gone in and

observed him he seems to be breathing normally.  Someone once suggested to me

to set up a video camera next to his bed at about midnight to see whether

he's stopping breathing.....I've never taken that step.......but have

observed for 15-20 minutes and not seen anything.

His behavioral issues are now largely under control.  He has a behavior

management plan for school (which I have attached for you to look at) and we

use a lot of the same principles at home.  Generally, to get him out of bed

in the morning on " sleepy days " , I will use a " carrot " like " If you get out

of bed NOW, we will have enough time to walk to the bus stop (rather than

drive). "  That usually does the trick.  I also end up carrying him to the

breakfast table several times a week - I'll say " You need to get up now - I

will carry you - do you want a piggy back ride or do you want to hold my

neck? "  LOL - not sure what I'll do when he gets too heavy to carry!!!  One

day last week I had to " carry him like a baby " (cradled in my arms) to get

him up.......but he DID get up!

Anyway, I'd be happy to offer suggestions if you have any specific questions.

 Take a look at the behavior management plan - there's lots of good

strategies and tips in there.  

P.S.  Sorry - I'll have to send the behavior management plan in the morning -

it's saved on our other computer, and we have overnight company sleeping in

the room where that computer is.  I'll send it to you tomorrow!

[Guest guest]

Hi - I'm , too......I have a son with DS, Jimmy, who is 10 years

old.  He was also diagnosed with ADHD when he was 5 years old - not so much

for hyperactivity - more a problem with impulsiveness and inattention.  He

does not have any autistic tendencies or ODD - but he does have a stubborn

streak a mile wide and behavioral " issues " that have been very problematic in

the past.

He currently takes dexedrine 7.5mg three times a day for the ADHD.  This

helps him greatly with the impulsiveness.  We have tried ritalin (he got

quite aggressive) and adderall (he sat under his desk and

giggled)......dexedrine has been the only thing that really works for him.

 He has been on the same dosage since kindergarten.  He is 52 inches tall and

weighs 67 lbs.

Jim is also a very active sleeper - thrashes around a lot and frequently when

I go in to wake him up in the morning he is sleeping jacknifed in half.  I've

often wondered if he has sleep apnea, but every time I've gone in and

observed him he seems to be breathing normally.  Someone once suggested to me

to set up a video camera next to his bed at about midnight to see whether

he's stopping breathing.....I've never taken that step.......but have

observed for 15-20 minutes and not seen anything.

His behavioral issues are now largely under control.  He has a behavior

management plan for school (which I have attached for you to look at) and we

use a lot of the same principles at home.  Generally, to get him out of bed

in the morning on " sleepy days " , I will use a " carrot " like " If you get out

of bed NOW, we will have enough time to walk to the bus stop (rather than

drive). "  That usually does the trick.  I also end up carrying him to the

breakfast table several times a week - I'll say " You need to get up now - I

will carry you - do you want a piggy back ride or do you want to hold my

neck? "  LOL - not sure what I'll do when he gets too heavy to carry!!!  One

day last week I had to " carry him like a baby " (cradled in my arms) to get

him up.......but he DID get up!

Anyway, I'd be happy to offer suggestions if you have any specific questions.

 Take a look at the behavior management plan - there's lots of good

strategies and tips in there.  

P.S.  Sorry - I'll have to send the behavior management plan in the morning -

it's saved on our other computer, and we have overnight company sleeping in

the room where that computer is.  I'll send it to you tomorrow!

[Guest guest]

laura,

been there and still doing that. my son ben (16ds) has had more than his

share of behavior problems. we finally got him on the right track (long

storry, let me know if you want details) and he is only taking depakote now.

he was on a plethora of drugs at one time. unfortunately we are seeing some

of the negative behaviour returning.

and sleep, well, thats a whole nother problem. we even has a sleep study

done. no apnea just restlessnes all night long. he moves constantly!

nothing they can really do for that they said but this ped. suggested

benadryl at night and it helps a little.

you can email me privately if you want and i can share more. i dont think

everyone else wants to hear about my private hell again. lol

kerrie

[Guest guest]

laura,

been there and still doing that. my son ben (16ds) has had more than his

share of behavior problems. we finally got him on the right track (long

storry, let me know if you want details) and he is only taking depakote now.

he was on a plethora of drugs at one time. unfortunately we are seeing some

of the negative behaviour returning.

and sleep, well, thats a whole nother problem. we even has a sleep study

done. no apnea just restlessnes all night long. he moves constantly!

nothing they can really do for that they said but this ped. suggested

benadryl at night and it helps a little.

you can email me privately if you want and i can share more. i dont think

everyone else wants to hear about my private hell again. lol

kerrie

[Guest guest]

In a message dated 11/5/01 8:17:16 AM Central Daylight Time,

roncfam@... writes:

> Hi ,

>

> I was thinking how similar our sons sound...until I got to the part where

> you have to coax Jimmy out of bed. I WISH that was a problem in our house.

> Our days often start at 5:30... has always been a morning

> person...lol. also takes Dexedrine (we also tried ritalin and

> adderall with no luck) and it seems to work well. takes 5 mg in the

> morning only. Does Jimmy take 7.5 mg. 3X a day, or 7.5 mg over the course

> of the day? I always thought Dexedrine was time release, does Jimmy have

> trouble falling asleep at night? The reason I ask is that starts

> losing his focus in the afternoon and I am wondering how we can combat that.

>

> R.

> Mom to (7, ds) and Grace (4)

>

>

So funny, I too have the behavioral issues with (12) and he is an early

riser. I always think that if I could get him to sleep better then the

behavior would improve. We did a sleep study but he is so tactily defensive

that he couldn't/wouldn't sleep with all the " stuff " attached.

He is on adderall after we have tried many other drugs out there. We tried

drugs for OCD, depression, anxiety, etc.

I am wondering if the adderall isn't helping much anymore so we will be

seeing the dr. soon.

Karyn

[Guest guest]

In a message dated 11/5/01 8:17:16 AM Central Daylight Time,

roncfam@... writes:

> Hi ,

>

> I was thinking how similar our sons sound...until I got to the part where

> you have to coax Jimmy out of bed. I WISH that was a problem in our house.

> Our days often start at 5:30... has always been a morning

> person...lol. also takes Dexedrine (we also tried ritalin and

> adderall with no luck) and it seems to work well. takes 5 mg in the

> morning only. Does Jimmy take 7.5 mg. 3X a day, or 7.5 mg over the course

> of the day? I always thought Dexedrine was time release, does Jimmy have

> trouble falling asleep at night? The reason I ask is that starts

> losing his focus in the afternoon and I am wondering how we can combat that.

>

> R.

> Mom to (7, ds) and Grace (4)

>

>

So funny, I too have the behavioral issues with (12) and he is an early

riser. I always think that if I could get him to sleep better then the

behavior would improve. We did a sleep study but he is so tactily defensive

that he couldn't/wouldn't sleep with all the " stuff " attached.

He is on adderall after we have tried many other drugs out there. We tried

drugs for OCD, depression, anxiety, etc.

I am wondering if the adderall isn't helping much anymore so we will be

seeing the dr. soon.

Karyn

[Guest guest]

In a message dated 11/5/01 8:17:04 AM Eastern Standard Time,

roncfam@... writes:

> Does Jimmy take 7.5 mg. 3X a day, or 7.5 mg over the course

> of the day?

Jimmy takes 7.5 mg 3x a day.....it is NOT the time release version of

dexedrine (we tried that - didn't work well) - so it wears off after about 3

hours. The third dose is taken when he gets home from school on Mondays and

Tuesdays only - he has OT after school on Mondays and piano lessons on

Tuesdays. Again, he only needs it for impulsiveness and inattention - but I

can get his homework done without it!

Also BTW - I only have to coax him out of bed SOME mornings.....the others,

he's up, bright eyed and bushy tailed at about 6:30, saying " GOOD MORNING,

Mommy! " Needless to say, I'm somewhat (!?!) less bright eyed and bushy

tailed than he is on those mornings.....

(Not an early bird, Not a night owl......more of a 10-2 kind of person

LOL)

[Guest guest]

In a message dated 11/5/01 8:17:04 AM Eastern Standard Time,

roncfam@... writes:

> Does Jimmy take 7.5 mg. 3X a day, or 7.5 mg over the course

> of the day?

Jimmy takes 7.5 mg 3x a day.....it is NOT the time release version of

dexedrine (we tried that - didn't work well) - so it wears off after about 3

hours. The third dose is taken when he gets home from school on Mondays and

Tuesdays only - he has OT after school on Mondays and piano lessons on

Tuesdays. Again, he only needs it for impulsiveness and inattention - but I

can get his homework done without it!

Also BTW - I only have to coax him out of bed SOME mornings.....the others,

he's up, bright eyed and bushy tailed at about 6:30, saying " GOOD MORNING,

Mommy! " Needless to say, I'm somewhat (!?!) less bright eyed and bushy

tailed than he is on those mornings.....

(Not an early bird, Not a night owl......more of a 10-2 kind of person

LOL)

[Guest guest]

Hi ,

I was thinking how similar our sons sound...until I got to the part where

you have to coax Jimmy out of bed. I WISH that was a problem in our house.

Our days often start at 5:30... has always been a morning

person...lol. also takes Dexedrine (we also tried ritalin and

adderall with no luck) and it seems to work well. takes 5 mg in the

morning only. Does Jimmy take 7.5 mg. 3X a day, or 7.5 mg over the course

of the day? I always thought Dexedrine was time release, does Jimmy have

trouble falling asleep at night? The reason I ask is that starts

losing his focus in the afternoon and I am wondering how we can combat that.

R.

Mom to (7, ds) and Grace (4)

[Guest guest]

Hi ,

I was thinking how similar our sons sound...until I got to the part where

you have to coax Jimmy out of bed. I WISH that was a problem in our house.

Our days often start at 5:30... has always been a morning

person...lol. also takes Dexedrine (we also tried ritalin and

adderall with no luck) and it seems to work well. takes 5 mg in the

morning only. Does Jimmy take 7.5 mg. 3X a day, or 7.5 mg over the course

of the day? I always thought Dexedrine was time release, does Jimmy have

trouble falling asleep at night? The reason I ask is that starts

losing his focus in the afternoon and I am wondering how we can combat that.

R.

Mom to (7, ds) and Grace (4)

[Guest guest]

In a message dated 11/4/01 4:24:34 PM Pacific Standard Time, JTesmer799

writes:

> , have you tried seeing if he has food allergies? Perhaps to much sugar or

> flour or something like that might be causing problems

Ironically, this was the first thing that was ruled out, as his pyschiatrist

had asked me about that.... was tube fed during the first years of life,

and even now, at 8 yrs., has trouble with certain textures and tastes in

food. If anything, we have to force him to eat, he is too busy running

around! And he is the only kid in his class that dislikes candy, chocolate,

etc. Something about his not liking things sticking to his teeth!

As far as sugar goes, the only treats he likes are ice cream and milkshakes,

which he gets only once in a while, from Mc's. But thanks for the

suggestions! I'm desperate to hear anything!

Hugs,

[Guest guest]

In a message dated 11/4/01 4:24:34 PM Pacific Standard Time, JTesmer799

writes:

> , have you tried seeing if he has food allergies? Perhaps to much sugar or

> flour or something like that might be causing problems

Ironically, this was the first thing that was ruled out, as his pyschiatrist

had asked me about that.... was tube fed during the first years of life,

and even now, at 8 yrs., has trouble with certain textures and tastes in

food. If anything, we have to force him to eat, he is too busy running

around! And he is the only kid in his class that dislikes candy, chocolate,

etc. Something about his not liking things sticking to his teeth!

As far as sugar goes, the only treats he likes are ice cream and milkshakes,

which he gets only once in a while, from Mc's. But thanks for the

suggestions! I'm desperate to hear anything!

Hugs,

[Guest guest]

In a message dated 11/5/01 5:17:05 AM Pacific Standard Time,

roncfam@... writes:

> starts

> losing his focus in the afternoon and I am wondering how we can combat

> that.

>

>

is this way too, he does much better in the am's.........he is on too

many med's at this point for anything to be time released, although he was

taking Trileptal as a noon dose at school, without much help anyway.

Too bad there wasn't a time released med they can take each morning that can

last 24 hrs.!!!!!!! I know, asking too much, huh?

Hugs,

The Other

[Guest guest]

In a message dated 11/5/01 5:17:05 AM Pacific Standard Time,

roncfam@... writes:

> starts

> losing his focus in the afternoon and I am wondering how we can combat

> that.

>

>

is this way too, he does much better in the am's.........he is on too

many med's at this point for anything to be time released, although he was

taking Trileptal as a noon dose at school, without much help anyway.

Too bad there wasn't a time released med they can take each morning that can

last 24 hrs.!!!!!!! I know, asking too much, huh?

Hugs,

The Other

[Guest guest]

In a message dated 11/5/01 4:51:57 AM Central Standard Time,

kbear0401@... writes:

> and sleep, well, thats a whole nother problem. we even has a sleep study

> done. no apnea just restlessnes all night long. he moves constantly!

> nothing they can really do for that they said but this ped. suggested

> benadryl at night and it helps a little.

>

> is just the opposite any more. He hardly moves at all and if

> he turns over it's usually to put his head at the foot of the bed. He was

> more restless till he spent all that time in a body cast. He really

> couldn't move more than his arms and it took 2 people to turn him. Even

> then he was pretty much in the same position. Drove me nuts, I don't know

> how he stood it. He was very good about it tho.

>

[Guest guest]

In a message dated 11/5/01 4:51:57 AM Central Standard Time,

kbear0401@... writes:

> and sleep, well, thats a whole nother problem. we even has a sleep study

> done. no apnea just restlessnes all night long. he moves constantly!

> nothing they can really do for that they said but this ped. suggested

> benadryl at night and it helps a little.

>

> is just the opposite any more. He hardly moves at all and if

> he turns over it's usually to put his head at the foot of the bed. He was

> more restless till he spent all that time in a body cast. He really

> couldn't move more than his arms and it took 2 people to turn him. Even

> then he was pretty much in the same position. Drove me nuts, I don't know

> how he stood it. He was very good about it tho.

>

[Guest guest]

In a message dated 11/5/01 7:56:48 PM Eastern Standard Time, JB66111@...

writes:

> is just the opposite any more. He hardly moves at all and if

> > he turns over it's usually to put his head at the foot of the bed.

LOL - about half of the time I go into Jimmy's room in the morning HE is

sleeping at the foot of the bed and his dog, , is sleeping with his

head on the pillow....

(Mom to Jimmy, 10, DS)

[Guest guest]

In a message dated 11/5/01 7:56:48 PM Eastern Standard Time, JB66111@...

writes:

> is just the opposite any more. He hardly moves at all and if

> > he turns over it's usually to put his head at the foot of the bed.

LOL - about half of the time I go into Jimmy's room in the morning HE is

sleeping at the foot of the bed and his dog, , is sleeping with his

head on the pillow....

(Mom to Jimmy, 10, DS)

[Guest guest]

It is I guess reassuring that I am not the only one with a 7 yr old son w/ DS

who has behavioral problems. Adam has been taking Ritalin 5mgs 2x daily for

almost 2 years. He has not been officially diagnosed with ADHD but his main

issues are his attention and inpulsivity. I would love to see any behavioral

plans that anyone. Also any ideas to control his giant stubborn streak. He

has brothers close to is age, older and younger, so it is wild around here

anyway. Look forward to any info. Thanks

Debra

Mom to 9, Adam(DS) 7, and 4

[Guest guest]

It is I guess reassuring that I am not the only one with a 7 yr old son w/ DS

who has behavioral problems. Adam has been taking Ritalin 5mgs 2x daily for

almost 2 years. He has not been officially diagnosed with ADHD but his main

issues are his attention and inpulsivity. I would love to see any behavioral

plans that anyone. Also any ideas to control his giant stubborn streak. He

has brothers close to is age, older and younger, so it is wild around here

anyway. Look forward to any info. Thanks

Debra

Mom to 9, Adam(DS) 7, and 4

[Guest guest]

I would love to see any behavioral

> plans that anyone. Also any ideas to control his giant stubborn streak.

Hi Debra. What helps us the most with the stubborn streak is to offer

choices. For instance if I ask to come and eat and he says no, I

may ask, " do you want ketchup or mustard on that " Sounds silly but

it works. I never have a hard time getting him to eat though

There are things that he gets his mind set on and gets upset if he doesn't

get what he wants. I inadvertently asked him if he wanted to go to Virginia

Tech this weekend before I mentioned Dr. Capone's visit. When I talk about

seeing Dr. Capone, he tells me no, Virginia Tech. The last thing he said to

me tonight was " Go to bed, get up, Virginia Tech " ...URGH...I think I'm going

to have a rough time with him tomorrow in Baltimore.

[Guest guest]

I would love to see any behavioral

> plans that anyone. Also any ideas to control his giant stubborn streak.

Hi Debra. What helps us the most with the stubborn streak is to offer

choices. For instance if I ask to come and eat and he says no, I

may ask, " do you want ketchup or mustard on that " Sounds silly but

it works. I never have a hard time getting him to eat though

There are things that he gets his mind set on and gets upset if he doesn't

get what he wants. I inadvertently asked him if he wanted to go to Virginia

Tech this weekend before I mentioned Dr. Capone's visit. When I talk about

seeing Dr. Capone, he tells me no, Virginia Tech. The last thing he said to

me tonight was " Go to bed, get up, Virginia Tech " ...URGH...I think I'm going

to have a rough time with him tomorrow in Baltimore.

[Guest guest]

In a message dated 11/5/01 8:42:16 PM Pacific Standard Time,

cindysue@... writes:

> I inadvertently asked him if he wanted to go to Virginia

> Tech this weekend before I mentioned Dr. Capone's visit. When I talk about

> seeing Dr. Capone, he tells me no, Virginia Tech. The last thing he said

> to

> me tonight was " Go to bed, get up, Virginia Tech " ...URGH...I think I'm

> going

> to have a rough time with him tomorrow in Baltimore.

>

>

, are you talking about " THE " Dr. Capone from Kennedy Krieger Institute

in land?? I am thinking of taking there, as we are exhausting

possibilities of any new med's.....we've tried them all!

Let me know when your appt. is and how it goes.

Thanks,

[Guest guest]

In a message dated 11/5/01 8:42:16 PM Pacific Standard Time,

cindysue@... writes:

> I inadvertently asked him if he wanted to go to Virginia

> Tech this weekend before I mentioned Dr. Capone's visit. When I talk about

> seeing Dr. Capone, he tells me no, Virginia Tech. The last thing he said

> to

> me tonight was " Go to bed, get up, Virginia Tech " ...URGH...I think I'm

> going

> to have a rough time with him tomorrow in Baltimore.

>

>

, are you talking about " THE " Dr. Capone from Kennedy Krieger Institute

in land?? I am thinking of taking there, as we are exhausting

possibilities of any new med's.....we've tried them all!

Let me know when your appt. is and how it goes.

Thanks,