Re: Irma//Hospitalization

[Guest guest]

Hi Irma,

Always there to help me, aren't you? You're a doll! There is no rhyme or

reason to 's behaviors...it is now at school and home. He used to save it

for mostly when he got home. Worsening of behaviors are seen in the afternoon

at school after lunch and continuing until he goes to bed at night. We have

seen the aggression, irritibility more this year than any other. Before, it

just looked like ADHD, with him being on the go all the time, but never really

moody or aggressive.

The teacher is keeping a behavior log for MHMR, who are keeping tabs so that

can get bumped up for additional services, thank God. His caregiver and me

are also keeping logs. He had a good spell for two weeks, where he was an angel

at school and even got the best student of the week award! I was shocked! He

was compliant, respectful, on task, and very delightful to be around.

Then, after this two weeks of good behavior, he started to slowly spiral

downhill. Nothing was changed in his routine at home or at school. He became

cranky non-compliant, moody, tearful, very aggressive on the playground,

disruptive in class, pulling papers off the bulletin board, throwing his shoes

and socks across the room, totally different child!

It was then I began to pick up on the bipolar disorder, and bought the bipolar

child and the explosive child books. fit BP to a tee! They can also have

ADHD as a co-morbid disorder, which makes it harder to dx.

Dr. Capone had told me two yrs. ago that he could be bipolar. I dismissed this

at that time, thinking is not aggressive or depressed. He said it may get

more evident the older he gets...boy, was he right! BP shows up differently in

kids than adults but the criteria in the medical books will not list them

separately, so this is why many doctors mis dx BP in kids, saying they are ODD,

ADHD, OCD, etc.

I am fed up with the doctors I have seen so far, they are so put off by his down

syndrome dx. I am convinced they would treat him, had he been a typical child

with these behaviors, and not have the DS dx to boot. They just don't want to

deal with it, or become flustered because they have other patients who are fine

on the same meds as .

There are plenty of med's hasn't tried, even though it sounds like we've

tried everything...and there are new ones that get approved every day. If there

were a place nearer that would do inpatient services, I may consider it, being

nearer to him. But Austin? No way.

Irma, send me any info you said you had. Any and all input is greatly

appreciated. I may even contact Dr. Capone again. Ironically, several of the

doctors we've seen already are experts in BP (I had looked up this info. on a BP

kids website!!) but of course, they do not deal with developmentally disabled

kids, and that's a big difference.

wrote:

There are 8 messages in this issue.

Topics in this digest:

1. Re: iep tomorrow morning

From: Csvillars@...

2. Re: Pdoc Suggests Hospitalization for !

From: Bowe

3. Re: Pdoc Suggests Hospitalization for !

From: " mum592001 "

4. Re: iep tomorrow morning

From: " mum592001 "

5. Re: Re: iep tomorrow morning

From: Csvillars@...

6. Fwd: [childrensapraxianet] Re: Global apraxia

From: lauriedrago@...

7. RE: Pdoc Suggests Hospitalization for !

From: " Louise & Andy "

8. Fwd: [DTT-NET] Dr. Partington VB conference in Albany,NY

From: lauriedrago@...

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Message: 1

Date: Sat, 9 Oct 2004 08:13:55 EDT

From: Csvillars@...

Subject: Re: iep tomorrow morning

one thing I have discovered is that in the last two meetings we have had

Trisha there and it's a lot harder for them to say no to things when she is

setting there looking at them. Also when they say we haven't seen her do things

you say she does at home you can easily demonstrate. For instance, yesterday

at the meeting they asked if Trisha evered said " no " when asked a question,

so I asked Trisha " do you want to go to bed " and of course she said " no " .

So by having her there they can see for themselves what is going onand they

could see her using sign so of course they would look like fools if now they

tried to say it wasn't appropriate. You have to remember some of those team

members only have limited knowledge of your child and doesn't seem them on a

daily basis. Also, it was good because they could see what her attention span

was, and what a small melt-down looked liked and they could see how much she

understood. I have been telling them for years she understood more than she

could express. Well they saw that for themselves yesterday when words were

said and Trisha responded appropriately and they were like, she knew what you

said. Of course we had a go round with her crying for a bit because she

was bored but that didn't last too long and it was good for the behavioral

consultant to see. Trisha loved being the center of attention and she would let

us know when we weren't paying enough attention to her. We also know that if

it gets too much for her then we will send her back to class. She made it

through the whole meeting which lasted about 2 1/2 hours.

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

,

I think one of the clues that I never paid attention to is the 1:1

aide 3 years ago report that she could not work with all day -

it was too much work and she refused to work with him again. So the

next year, they had two aides and split their time with .

They were exhausted. This year his teacher is pushing for him to get

his own 1:1 aide (there are 5 children, one teacher and one aide in

the classroom now) and I admit that after being alone with him for a

few hours, I am exhausted.

A major problem we have is taking to various appointments.

It's extremely difficult and he always has major meltdowns. I did

find a lab that will come out to the car and draw blood. One of the

worse places is KKI! You would think that a developmental disability

hospital would work with these kids instead of being so clinical in

their environment. The last time we went to KKI, I noticed the

playroom was gone. (Not that it was actually used appropriately -

most of the time it was closed or there was so much clutter or the

woman working there was too engrossed in her talk shows and never

interacted with the kids.) The only thing they had in their lobby

was a small book shelf full of old and dirty books and puzzles (some

with no pieces!) and one of those OT toys (can't think of the name,

but you move the pieces on a wire to get them from one end to

another). They also have an old TV, but they have very old videos

and the screen is hard to see. They really could use a " sensory "

room where the doctors can see the patients who have major transition

issues.

can be very sweet. I'm really pulled regarding his

hospitalization, especially those days when things are going well.

KKI is 1 1/2- 2 hours away, but still that is too far for me to pop

in several times a week. Our family is very relieved to hear that

will be getting more help - they are all worried about him

and have been for some time. His grandmother does live in Baltimore

and between the three of us, will have family there three

times a week.

Also, someone mentioned that medication should be decreased before

it's increased. cannot take more than 5 mg of adderral,

which is considered a low dose. We tried upping his depakote and his

behaviors became much worse. Now I am wondering if maybe we

shouldn't try lowering the dose of depakote and see what happens?

I'll have to talk to the psychiatrist about that and see what he

says. He's suggested some type of inpatient/residential short term

program since he's been seeing .