Re: OCD/Aspergers - This is really long!!!

[Guest guest]

Marilyn-

Just a hug to say that I could cry in frustration for you and . Roller

coaster doesn't even begin to describe it -- some people think those are fun. I

can't imagine anyone who would enjoy what you all have been through. Aubrie is

just beginning to become self-aware. I would hate to see her struggle through

the issues that is now dealing with. My thoughts are with you all.

Sorry I don't have any suggestions.

Michele W

Aubrie's mom

[Guest guest]

Marilyn,

Wow! I feel for your and . I know that the education time lost due

to meds not working and creating more problems is very difficult. We struggled

with on this for several years.

As you might remember, was considered a 'danger to society' by our

home school district. A few years ago, the refused to enroll her because she

was so terrible. At that time, I was a firm believer her behaviors were

inappropriate forms of communication. was not on any medications at

that

time.

Finally, was given a chance to be taught as a deaf student instead of

a hearing student (in a different district). As her communication increased,

her behaviors decreased. has some very compulsive behaviors. I

assumed that she was just doing it to be a brat child. Her major compulsion is

water. She has to soak her clothes so she can take them off and change into

different clothes. She will do this ALL day long.

One day, I realized that she was not getting into the water because she just

wanted to torment me, but she really couldn't stop herself. I watched her as

she started to walk up to the faucet, she signed no and started to walk away.

Then she had to turn back to the faucet and say no again and tried to walk

away. After three or four tries she couldn't do it anymore and dove into the

water and soaked all her clothes. I would notice her doing this as she walked

by the drinking fountain at school and other places as well. I decided to seek

help for this.

The psychiatrist felt that trying to medicate to see if it helped her

wouldn't hurt. We started with Celexa and kept having to increase the dose.

Once she

maxed out on that, we switched to Zyprexa. The Zyprexa was started at the

2.5 mg dose. Every 45-60 days the dose is adjusted when the effects of it start

to show signs of wearing off. Currently she is on 15 mg. Zyprexa has a

sedative affect. Since being on it, has slept all night long almost

every

night. She only slept 2-4 hours most nights before starting this. We found

after being on the Zyprexa a couple of months, it was bringing her down

emotionally a little too far. It was like she was depressed. She would cry for

apparent reason. But, educationally she was learning in leaps and bounds. The

teacher and I just couldn't take the tears. We then added Topamax level out

her mood swings a little. And to this day, it remains a very good combination

for .

I know our reasons for seeking out the medication was a little different that

what you are currently experiencing. However, since she has been on these,

her urge to throw everything across the room has almost vanished, her need to

hit the walls because they are there has stopped. Her aggressions have

disappeared and she has become a very loving young lady (for the most part).

While on these medications, it does not stop her urges to get into the water.

In fact at home it is still a struggle. However, she is able to control the

compulsions in places she knows she needs to. Then at home, she needs some

freedom to release and relax. Most days it is not as bad as when she was not

on the meds.

As always, I have written a book. I hope you find a solution soon for

and for your family.

Sheryl

Mom to 17 CHARGE and Mitch 18

[Guest guest]

Marilyn, I hope you find the answers you need. At this point, tim is just

annoying. he's not really hurting anyone or himself. just the same

questions or statements over and over and over......you get the idea.

obsessed with time and routine. just starting to really bother the family

unit--brothers don't want to be around him etc.

good luck with the meds or lack there of ---I hope you find the right one

for her.

OCD/Aspergers - This is really long!!!

> wrote:

> > we are also seeing a phsychologist for behaviors--and he has suggested

a

> possability of asperger syndrome---I got some info from the internet. any

> thoughts from those of you with behavior issues? has this been mentioned

to

> any of you?>

>

> :

> I'm with you on this one! We are about done in with this behavior stuff

> already!

>

> Bonnie, I know you have dealt with some of this with Pat. At least I

think

> it was you who said Pat had some Tourettes issues going on. (And you know

> pretty much what is like - if you've met her at the conferences,

> you've pretty much gotten the essence of her!) What combination of meds

> have you found to help? I know if I look in the archives, I'll probably

> find it; but right now we're lucky to find time to sleep and still

function

> enough to work. Anyone else dealt with anything like what follows?

>

> We've been having a fun ride this year at school! (Not! Unless you like

> rollercoasters - the scary ones!)

>

> The school wanted - it was back in October that we met, I think - to put

an

> Autism label on ; most likely Asperger's. I was VERY adamant that

> there be additional testing to see about other possibile causes for her

> repetative behaviors. In the interview with the psychiatrist, he also

felt

> it was more of an OCD issue and not autism. We have now tried 3 different

> meds, with negative results. The teacher has said he'd prefer to deal

with

> the OCD issues versus the medication effects.

>

> We first tried Zoloft and after one dose at 1/4 of the intended/eventual

> amount, was off the wall. Couldn't sit, aggitated, said it made

her

> " shake inside " , sleeplessness, and some aggression. That was discontinued

> and notes placed in her records that Zoloft has, not an allergic reaction,

> but a " severe adverse effect " on her. It was supposed to peak at 12 hours

> and then diminish; but at the 18 hour mark, was still higher than

a

> kite and faster than a video tape on rewind!

>

> Next we tried Risperdil. It seemed to work better, but had problems with

> dryness, stomach upset and bowel irritation. Stopped that one after about

7

> days. (And a few aggressive behaviors were starting to come out.)

>

> Third we tried Celexa. This had very aggressive, negative effects. The

> teacher also indicated was making obscene gestures that were very

> graphic in nature! Can't figure where she got them, because most of the

> other kids didn't know what she was saying; but the teacher was too

> embarrassed to show some of the gestures! She also threw chairs, threw a

> large eraser at the back of the teacher's head, and hit and scratched

> another student. The teacher also said he could predict when it was going

> to boil over because would start rocking slightly in her seat,

then

> within 2 minutes it would escalate to uncontrolled rocking and the other

> behaviors. He said it was an amazing thing to watch. One of the school's

> counselors came into the classroom and helped to lightly restrain .

> They got her settled and started discussing something. Normally,

is

> nosy about adult conversations and would pay attention to it. Instead,

> started rocking and soon was out of control. The counselor was

> shocked because they all know just isn't like that, and he was

> surprised at how quickly things spiraled and escalated.

>

> We've had to pick her up early from school on 5 different occasions since

> starting the meds, and she hates leaving school and the dorm. She really

> gets upset about it, but they try time-outs and even placing her in a safe

> detention room to calm down. She kicked the detention teacher, and threw

a

> chair with a desk attached! I couldn't hear the voicemail message very

well

> one time because she was throwing things and making so much

disruption/noise

> in the background. This is just way too much for all of us - including

> !

>

> We've now discontinued the Celexa as well. The psychiatrist is suggesting

> neurological testing at this point. He and the teacher state they have

> dealt with children with Tourettes, and the behaviors exhibits

when

> on the meds is very much like that. She could have a tic/seizure

disorder,

> because when she was an infant she had a slight facial tic that would come

> out when stressed. Soooo, off to the docs again.

>

> 's teacher - having taught 3 other children with Tourettes - feels

> that maybe the OCD meds are doing their job, but maybe that is allowing

the

> Tourettes to surface. He thinks the OCD issues are suppressing the

> Tourettes, and when the OCD is controlled then the Tourettes is evident.

> Has anyone else encountered this? I know that often Tourettes manifests

> itself in the years going into puberty. is 11 years old, so is

> approaching that timeframe chronoligically. Biologically, we're not sure.

> It's felt she will probably need sex hormone replacement therapy to assist

> the onset of puberty because she is also growth hormone deficient. Can

> " puberty issues " arise without the hormones being involved?

>

> We may not be able to get the neuro testing for 6 weeks yet. We will see

> endocrinology in July about growth, but do I need to push for an earlier

> appointment to discuss this? (The puberty issue, that is.)

>

> The OCD related issues are the repetition of questions, messing with her

> hair to the extent it distracts from class work/education (she started the

> day with a pony tail; it came down and she couldn't do anything/attend to

> lessons until it was perfect again - which can take up to 20 minutes!).

The

> teacher said also " zoned out " a few times last week. It got to

the

> point he knelt in front of her desk and waved his arms: No reaction

> what-so-ever! No blink, no giggle (like usual), and her tongue tip was

> tucked in her teeth to just where you could see it. This is a new

> development. Med effect? Maybe. Or tic/seizure? Who knows.

>

> I'm at a loss as to which avenue to pursue first. Rick will be taking

> to a pulmonology appointment tomorrow, because we want to see if

> sleep/apnea/CPAP might be at issue here also. (Her teacher also thinks

she's

> not getting enough sleep because starts the week fine, but by

> Thursday is just " worn out " .) has CPAP, but we have had

> problems using it at home. At first she used to take it off and turn off

> the machine, but not anymore. However, it often comes off in the night:

> We will find the mask on the floor or off her face with the machine still

> running. We're thinking if she has it in the dorm at school, maybe they

can

> keep a better eye on it and will keep it on all night. There is

> always a staff member awake and could check and adjust the mask if it

slips.

>

> We think the Celexa is finally out of her system, because they said she

was

> much more her old, loving (repetative!) self today. It was day 6 after

> stopping the Celexa.

>

> ANY help or ideas and insight is greatly appreciated as always. I'm not

> sure educationally we can put this off for up to 6 weeks! We had just

> gotten her back on track this year academically, and this is a huge set

back

> right now. The worst part is that knows things aren't right and

is

> constantly apologizing to everyone.

>

> And to think this all started because the school wanted to change a label.

> We're worse off now than we were with the management of the

repetitousness.

>

> Friends in CHARGE,

> Marilyn Ogan

> Mom of Ken (14, ADD) and (11, CHARGE+)

> Wife of Rick

>

>

>

>

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> Foundation or to become a member (and get the newsletter)

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> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

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www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

A good book