Rambling here, just lost tonight on my thoughts...

[Guest guest]

I joined your site a few weeks back and I have read and read and have

learned lots, THANKS

You all seem so close here, I love that :-D

I do apologize for the ramble as I really don't know anyone here yet

BUT I am just plain sad tonight bout my .

Long story short, is 13 and just about a month ago we were told

without a doubt he also has ASD as his other DX. Now that did not

come as a surprise to us really as we always said was not your

typical child with DS. Colin and I have questioned this about Chris

for years. is a very outgoing boy and actually has very good

eye contact and due to that most said no way no how. Dr. Pipan at

CHOP said to us after 3 hours with its not even a ? he for

sure has ASD also. is very OCD too and we just started him on

Lexapro (sp) very small amount, he has been on for a couple of weeks

now and honestly I am not sure if its just way to little, need to up

them, if they are helping at all or if its even making it worse. I

will be calling the Doc on Monday BUT Man how do you guys that have

kids on meds for things like this figure this all out, KWIM?? The

Doc here we are dealing with for the meds is kind of having a hard

time as just seems so darn sesitive to meds and the Dr. at CHOP

that is the expert is hard to get to.

Some days i just feel like my boy is an experiment for these Docs,

does anyone ever feel that way??

Colin and I are both in agreement that we have noticed Chris

regressing, he now hits himself he has never ever done that before, I

even caught him biting his own arm OMG truly he has never done that

before in 13 years :-(

I am sitting here thinking NO one would want to be like this, I know

he is not doing this for fun BUT how in the world do we help him and

Man I am wondering why now at 13 is he doing such things, KWIM??

K, I will stop here as I could go on and on tonight and my heart

hurts for as he no way wants to act out as he is, BUT I am lost

as where to start to help him.

If you read this far THANKS

Christie, AKA Mind overload tonight ~

[Guest guest]

Christie: So sorry you are feeling bummed. We have been seeing Dr. Pipan at

CHOP for over a year now and she has been great with regulating the meds. for

Tori. Again, Tori is 6 1/2 yrs. and got the DDx back in 2003.

Unfortunately, it is a game of Russian Roulette with the meds depending on your

child. Some meds works for some, and not for others. We have been fortunate

that most of the meds. Tori is on are working, although we have had to adjust

dosages to get where we are today. She currently takes Prozac and Risperdal,

will be starting Ritalin shortly to help with her impulsivity.

Louise's son, who just turned 43, received his dx at the age of 41. I can't

even imagine going that long not knowing. I am sure you will hear from the

wonderful families here that many of their kids were quite older when dxd.

One thing to remember we are all in the same boat and understand what you guys

are going through.

Hope this helps.

Liz

Rambling here, just lost tonight on my thoughts...

I joined your site a few weeks back and I have read and read and have

learned lots, THANKS

You all seem so close here, I love that :-D

I do apologize for the ramble as I really don't know anyone here yet

BUT I am just plain sad tonight bout my .

Long story short, is 13 and just about a month ago we were told

without a doubt he also has ASD as his other DX. Now that did not

come as a surprise to us really as we always said was not your

typical child with DS. Colin and I have questioned this about Chris

for years. is a very outgoing boy and actually has very good

eye contact and due to that most said no way no how. Dr. Pipan at

CHOP said to us after 3 hours with its not even a ? he for

sure has ASD also. is very OCD too and we just started him on

Lexapro (sp) very small amount, he has been on for a couple of weeks

now and honestly I am not sure if its just way to little, need to up

them, if they are helping at all or if its even making it worse. I

will be calling the Doc on Monday BUT Man how do you guys that have

kids on meds for things like this figure this all out, KWIM?? The

Doc here we are dealing with for the meds is kind of having a hard

time as just seems so darn sesitive to meds and the Dr. at CHOP

that is the expert is hard to get to.

Some days i just feel like my boy is an experiment for these Docs,

does anyone ever feel that way??

Colin and I are both in agreement that we have noticed Chris

regressing, he now hits himself he has never ever done that before, I

even caught him biting his own arm OMG truly he has never done that

before in 13 years :-(

I am sitting here thinking NO one would want to be like this, I know

he is not doing this for fun BUT how in the world do we help him and

Man I am wondering why now at 13 is he doing such things, KWIM??

K, I will stop here as I could go on and on tonight and my heart

hurts for as he no way wants to act out as he is, BUT I am lost

as where to start to help him.

If you read this far THANKS

Christie, AKA Mind overload tonight ~

[Guest guest]

Christie,

Big Hugs to you! My son is only 7 so I have been dealing with this a lot less

than you. Plus we have had our diagnosis for awhile. We never believed when

the school and therapist told us that he could not have Autism. " He is just too

social. " We all go through our cycle of ups and downs. We are on a high right

now but 2 weeks ago, it was a low. Hope you get some insight from all these

great people.

Holly

Rambling here, just lost tonight on my thoughts...

I joined your site a few weeks back and I have read and read and have

learned lots, THANKS

You all seem so close here, I love that :-D

I do apologize for the ramble as I really don't know anyone here yet

BUT I am just plain sad tonight bout my .

Long story short, is 13 and just about a month ago we were told

without a doubt he also has ASD as his other DX. Now that did not

come as a surprise to us really as we always said was not your

typical child with DS. Colin and I have questioned this about Chris

for years. is a very outgoing boy and actually has very good

eye contact and due to that most said no way no how. Dr. Pipan at

CHOP said to us after 3 hours with its not even a ? he for

sure has ASD also. is very OCD too and we just started him on

Lexapro (sp) very small amount, he has been on for a couple of weeks

now and honestly I am not sure if its just way to little, need to up

them, if they are helping at all or if its even making it worse. I

will be calling the Doc on Monday BUT Man how do you guys that have

kids on meds for things like this figure this all out, KWIM?? The

Doc here we are dealing with for the meds is kind of having a hard

time as just seems so darn sesitive to meds and the Dr. at CHOP

that is the expert is hard to get to.

Some days i just feel like my boy is an experiment for these Docs,

does anyone ever feel that way??

Colin and I are both in agreement that we have noticed Chris

regressing, he now hits himself he has never ever done that before, I

even caught him biting his own arm OMG truly he has never done that

before in 13 years :-(

I am sitting here thinking NO one would want to be like this, I know

he is not doing this for fun BUT how in the world do we help him and

Man I am wondering why now at 13 is he doing such things, KWIM??

K, I will stop here as I could go on and on tonight and my heart

hurts for as he no way wants to act out as he is, BUT I am lost

as where to start to help him.

If you read this far THANKS

Christie, AKA Mind overload tonight ~

[Guest guest]

Christie, Mic hits himself there is always a reason for it figuring it out is

sometimes a challenge. He will slap himself if hes hurting if he bumps his head

he will slap his head if he has an earache he will slap his ears. If hes hurting

somehwere he slaps the place he hurts. He just started doing this about a year

ago hes 6.If his Dad is yelling at him he slaps his legs. If I yell at him he

just smiles and runs he doesnt take me serious like he does his Dad. I know alot

of us are using meds for their kids with success. I think its a trial and error

game with the meds until you find the right one.You are not alone. Even though I

knew Mic was asd long before his dx it didnt really hit me until the best dec

ped in our area told me. I sat there and cried.He watched Mic for about 5

minutes and gave him a few tests and I brought all Mics monthly speech evals

from EI with me and when we went back and read thru them you could see asd

unfold right on those evals, Your not alone

here and believe me this group saved my sanity. Laurie

[Guest guest]

Hi Christie,

Totally agree here, you're excused with this feeling and definitely

not alone as several have posted. Most of us are in the same boat. It

helps to share these thoughts. Better us who can relate than forking

out money for something else. Just good to get it out of the system

and not bottle it in. This list has kept me in line as I have had my

share of medical issues sometimes due to stress.

When my son was 12 y/o I wanted to throw in the towel but my prayers

had been answered, not 100 % but at least to some relief.

My son once upon a time was under the meds when he was younger but it

was a no go for him. Last year under a GI study and the same doc had

recommended some supplements that all have made him regressed with

his communication skills which he was doing tremendously well with

ABA/VB, had over 200 words, becoming tri-lingual (English, Spanish &

Signing, all gone), not communicative wise but nice to hear how much

he had learn which just gave me some hope. It had caused some

underlying medical issues which are being addressed now by other

medical professionals with alternative Bio-med routes before

prescribing meds as a last resort. Thank God my son is returning back

as he is slowly coming around with one word, his eyes are clear, not

in that trance world he had gone to. Another story but he was a

guiena pig for the first doc, no longer a patient there.

These days its just being a detective to rule out any underlying

medical issues with possible ear infections, dental issues, GI,

food/intoleranc/allergy, etc. once ruled out then I analysis and

pinpoint the targeting behavior issues going on at the time. I am a

huge fan of ABA & SI and this has helped my son tremendously.

This is my list when I begin a step by step analysis once all medical

physical is ruled out:

Avoidance.

Escape.

Terminate the ignore.

Auto-reinforcement.

Most the time it was due to increased sensory sensitivity. That will

affect every aspect of his day. The changes of negative behavior

increases as a way to cope with the discomfort he is experiencing.

Due to one of the characteristic of a person with DS, must always

observe the Physical characteristics of the Muscle Hypotonia for it

not be overlooked. Increased sensitivity to auditory stimulation may

elicit unexpected behaviors to avoid noise...safety issue.

Encourage yearly hearing, vision, and thyroid function testing. My

son had also experienced sleep apnea. He is finally getting some

sleep once again. When his sleep is off, this takes alot out of him

just getting out of bed. Already overwhelmed with the restroom

routine, etc. Can you imagine then attending school, especially right

after lunch? Then once home, fully overloaded energy extremely low.

It takes alot to function and to learn. Just thought I share my story

and nice to read what others have or going through.

Wish you well in finding some type of strategy or med for your son to

help him at this time.

Irma,18,DS/ASD

[Guest guest]

luvox helped the best for nathan's ocd, but my youngest child without ds,

also has ocd and he has been on lexapro for around 3years now, its hleps a

little, the doc tried to up it once and it made things very bad, so we just

stick

with the 10mg tablet, it helps with his ocd some and his depression stays

away. shawna

[Guest guest]

In a message dated 9/21/2006 5:20:00 P.M. Eastern Standard Time,

christine1223@... writes:

I have a problem that is driving me CRAZY! My 5yr. old D/S-Autism child

will not stop " humping " the floor.

Trisha used to do it all the time and we would just tell her to sit up. She

rarely does it now.

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

In a message dated 9/21/2006 5:20:21 P.M. Eastern Standard Time,

christine1223@... writes:

I have a problem that is driving me CRAZY! My 5yr. old D/S-Autism child

will not stop " humping " the floor. Im sorry I just dont know what else to

call it but she will hump anything, she will climb on a table, do it on the

sofa, floor, etc. I constantly try to divert her attention but no go. Her

face is gettting so red from all the rubbing. I mentioned it to her Ped.

last visit and he said that it was normal and to leave her be and to of

course not let her do it in public places......course not let her do

curious if anybody has ever expereienced theis.

Oh YES !!!!! Maddie (12, DS, autism) humps. Though it's not

NEAR as bad as it used to be. Yes, the only thing that worked with her was

ignoring it. We were initially told to take her to her bedroom....HA, that's

ALL she wanted...leave me to be alone by myself. So, we just ended up

ignoring it. She still does it, but NOWHERE like she used to.

Donna

[Guest guest]

In a message dated 9/21/2006 6:17:59 P.M. Eastern Standard Time,

christine1223@... writes:

so should i just leave her alone? because no matter what i do she insist

that shes going to do it no matter what! and I cant reason with her (she is

non-verbal) so me just saying no or sit up wont work here.

, I'll tell you the one thing that gave us more control over the

situation. The KEY to getting Maddie to stop (like if someone else was in

the house...you know, company or something), was to catch her immediately. In

other words, if she had a few minutes to *get into it* (sorry to be

graphic), we were lost...she'd TOTALLY flip out...you know, she HAD to finish.

But

if we re-directed her from the get go, it worked. Otherwise, we ignored it.

To this day, if it's just us (me and Dad), we let her go. More in the

room, we stop it from the beginning. Hope this helps.

Donna

[Guest guest]

<<I have a problem that is driving me CRAZY! My 5yr. old D/S-Autism child

will not stop " humping " the floor. Im sorry I just dont know what else to

call it but she will hump anything, she will climb on a table, do it on the

sofa, floor, etc. I constantly try to divert her attention but no go. Her

face is gettting so red from all the rubbing. I mentioned it to her Ped.

last visit and he said that it was normal and to leave her be and to of

course not let her do it in public places.........well duh! Anyway, just

curious if anybody has ever expereienced theis. >>

Uh YEAH!!!! for years. 's preferred method was humping stuffed animals so

we had dozens of Barney dolls that been violated. She still does it now once in

awhile (especially right before her period) but it's really alot better. One of

the things we were taught to do was to take her immediately when we saw her

doing it and to wash her private area with a wet cloth. Sometimes this would put

a stop to it as I think she may have been having bathtub residue left on her, or

even some yeast infections. It's not so much of a sexual thing at that age as a

sensory thing (in my opinion)....but don't feel alone, was the master

humpster....in church, on anybody's couch....you get the idea. Didn't really

have anyone to talk to about it at the time so feel lucky that way at least:-)

Sherry

[Guest guest]

Oh yes! We have dealt with this also. Jake, now 7 used to hump everything! He

even went so far as to put toys in his diaper and then hump the toys. Also, it

is a running joke at our house.....Jake is not allowed to do laundry. Why you

might ask? Because he loves the plastic coat hangers! He would put the hook

end in his diapers and just go to town! For the longest time we had no clothing

in his room, no hangers, or anything. He did eventually grown out of the

constant humping. Now, it is mostly when he is going to sleep. It does pass!

I heard the same thing from the doctors.

Holly

Re: Rambling here, just lost tonight on my thoughts...

> luvox helped the best for nathan's ocd, but my youngest child without ds,

> also has ocd and he has been on lexapro for around 3years now, its hleps a

> little, the doc tried to up it once and it made things very bad, so we

just stick

> with the 10mg tablet, it helps with his ocd some and his depression stays

> away. shawna

>

>

>

[Guest guest]

: I think alot of kids have done or do do that. From what I have

heard, it is another sensory issue.

Liz

Re: Rambling here, just lost tonight on my thoughts...

> luvox helped the best for nathan's ocd, but my youngest child without ds,

> also has ocd and he has been on lexapro for around 3years now, its hleps a

> little, the doc tried to up it once and it made things very bad, so we

just stick

> with the 10mg tablet, it helps with his ocd some and his depression stays

> away. shawna

>

>

>

[Guest guest]

I have a problem that is driving me CRAZY! My 5yr. old D/S-Autism child

will not stop " humping " the floor. Im sorry I just dont know what else to

call it but she will hump anything, she will climb on a table, do it on the

sofa, floor, etc. I constantly try to divert her attention but no go. Her

face is gettting so red from all the rubbing. I mentioned it to her Ped.

last visit and he said that it was normal and to leave her be and to of

course not let her do it in public places.........well duh! Anyway, just

curious if anybody has ever expereienced theis.

Re: Rambling here, just lost tonight on my thoughts...

> luvox helped the best for nathan's ocd, but my youngest child without ds,

> also has ocd and he has been on lexapro for around 3years now, its hleps a

> little, the doc tried to up it once and it made things very bad, so we

just stick

> with the 10mg tablet, it helps with his ocd some and his depression stays

> away. shawna

>

>

>

[Guest guest]

so should i just leave her alone? because no matter what i do she insist

that shes going to do it no matter what! and I cant reason with her (she is

non-verbal) so me just saying no or sit up wont work here.

Re: Rambling here, just lost tonight on my

thoughts...

>

> > luvox helped the best for nathan's ocd, but my youngest child without

ds,

> > also has ocd and he has been on lexapro for around 3years now, its

hleps a

> > little, the doc tried to up it once and it made things very bad, so we

> just stick

> > with the 10mg tablet, it helps with his ocd some and his depression

stays

> > away. shawna

> >

> >

> >

[Guest guest]

In a message dated 9/23/2006 2:00:37 P.M. Eastern Standard Time,

gldcst@... writes:

I never even considered this when jamie was little because the docs told us

she had NO GI problems.

While I agree it could be some underlying problem let's not forget that it

could just as easily be a sensory or hormonal problem as well. The best thing

to do is to ask for a complete physical exam to be done including an upper

and lower GI series. Trisha does need to " sit " a certain way in order to

have a BM on the toilet but she doesn't hump before having a BM usually she

only

humps if she has been laying on the floor on her stomach. She has a small

opening so it makes it hard sitting to have a BM so she sits with one foot

propped on the toilet seat. Sorry don't mean to be so graphic. It works for

her and it's a lot less invasive than doing surgery to make the opening

bigger, now when she stops growing then we will re-evaluate but it just doesn't

make sense to do surgery now and maybe have to do it again later.

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

Thanks I will definitely ask for a KUB, please tell me what it stands for.

Disregard my last post about asking if i should make an appt. I just need

something specific in my head to tell the Dr. when I call.

Re: Rambling here, just lost tonight on my thoughts...

> ,

> Your correct no matter what you tell her or do she is going to have her

> way because she needs to find that calming and organizing which she

> seeks the stimulation her brain craves for.

>

> For my son the mini-trampoline, swings, large ball had provided some

> calming input. You can imagine having one of those Plateform swing, she

> would love it.

> Once she begins, if you have a mini-trampoline have her jump on it,

> afterwards try giving her a warm bath with some Epsom Salt, please make

> sure she does not swallow any of it. At least for about 15 minutes if

> she allows it, then see if this would give her low ab muscle area some

> relief. Massage her, very little talking, soft music, singing or

> reading will help for some down time. Something else to have around are

> those water wigglers, stretchy fidget toy items, putty, squishy balls

> filled with something, or an image captor. I use one of those surgical,

> non-allergy plastic glove and filled it with some rice or a balloon

> filled with some flour make sure its closed tight, all this was ideal

> for his tactile exploration.

>

> If you try this then contact your doc and see if he could refer your

> daughter to be seen by a GI doc and request for a KUB or try

> eliminating any dairy products and limit sugar intake.

>

> It never hurts to see if this is one of the culprits. Definitely some

> sensory issues going on.

>

> Several of my friends whom I had mentioned this to with their kids also

> doing the hump everywhere, the parents would call me when they are at

> their wit end of any strategy, they tried it. Today one of them had

> contacted me told me, told me her daughter is doing wonderful and able

> to function better with some relief. Her daughter is now seen by the

> same docs as my son.

>

>

> Irma,18,DS/ASD

>

>

>

> >

> > so should i just leave her alone? because no matter what i do she

> insist

> > that shes going to do it no matter what! and I cant reason with her

> (she is

> > non-verbal) so me just saying no or sit up wont work here.

>

>

>

>

>

>

>

> --------------------------------------------------

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>

[Guest guest]

<<Irma, Thanks so much for posting about GI problems. I know that in >>

Yeah, I agree. I never even considered this when jamie was little because the

docs told us she had NO GI problems. Sop maybe she didn't actually just grow out

of the humping thing, maybe now that her tummy has been fixed thru meds and

SCDiet she is feeling better and that's why she doesn't do it anymore. man. I

sure wish I knew then what I know noww. (especially what Irma knows now LOL). We

got a doctor's report finally after screaming and begging almost a year after

her first endoscopy and it listed severe gastritis....The doctor NEVER told us

that and sent us off in other medical directions. Grrrrrr.

Sherry