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Hi again...

Seeing a GI is ok...but they should have a speciality in liver...that is who Tyler sees....they have to be up on what is going on in the liver world....

How long has she been on the 40 of pred....most with AIH are on both Imuran and Pred.....with the reduction of pred...to hopefully get off completely of the pred...

What med is she taking for the help in keeping food down....Prilosec....?

Ty has taken that....

I would definately ask about the imuran if she is not on it....

I think that there is a history of auto-immune in families...it is one of the questions that is always asked of us....when seeing other doctors ...or in the ER,.....

I have another son who is now 24 and he has Ulcerative Colitis...since he was 3.....my daughter is 28 and has nothing now....and I certainly hope it stays that way.....

Let me know how the appointment with Jackie goes and also how things go with the testing for ....

take care and talk soon

Luanne

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  • 6 months later...
Guest guest

My insurance company also refuses to pay for speech therapy unless

it's for someone who has lost the power to speak because of a stroke

** " or an accident. " ** Jill

Jill

Yeah - according to the insurance company you wanted your child not to speak

" on purpose " .

It would seem to me - it was an accident if it wasn't on purpose. You know

how they stick to

the letter of the law. Maybe you can get them on wording.

Dawn

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Wow Jill

Sounds like things are going pretty well.

good group of kids at the school too.

Even though he may not be " included " in a lot of teen things, at

least they aren't picking on him and tolerate his " odd " behaviour

in school. Most kids would terrorize a kid that made weird

noises and stuff in school. I am glad they don't do that to Owen.

Dawn

The kids are

still really nice to him at school. He has never had a problem with other

kids teasing or bullying him. Part of the reason is that they seem to

respect him for his amazing memory and they are quite tolerant of his odd

habits, such as wandering around the room during class and occasionally

making funny noises. They even try to protect him from teachers who object!

As for his academic skills, he seems to have a natural aptitude (and

certainly a great interest) in math and science, including computer science,

and does well in Spanish as far as spelling, vocabulary and grammar are

concerned. He has trouble with writing in both English and Spanish. Long

writing assignments are really difficult for him, and so are long-term

projects of any kind. Planning ahead and dividing work into segments is

something that doesn't come easily to him. But his grades are very good --

As and Bs. Every child with Asperger's seems to have different academic

skills, though. Some are good in history and have trouble with math.

Don't know if this helps? Forgot to mention that Owen is 16 and a junior in

high school. He is mainstreamed in all his classes.

Jill

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  • 2 months later...
Guest guest

<<<<<<< In elementary and middle school, usually

Owen's behavior would improve over the course of each school year, as he got to

know the routine. But during the last few days, when the normal

structured days would be replaced by videos and trips to swimming pools and

amusement parks, he felt confused and unhappy rather than like a child

getting a treat.>>>>

exactly !

As for not having any respect for authority, we noticed that Owen became

less docile as he entered his teenage years........ but it's a stage most kids

go through sooner or later.>>>>>

I need to be sure this is due to teenage independce fits......

<<<<I will be praying for you and M>>>>>

Thanks, Jill, you are always so supportive and generous with telling us about

your exoperience (you are a veteran among us with AS, he ?)

F

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  • 1 month later...
Guest guest

Hi Jill

Congratulations on the new baby!!!!!!!!!!

nice pictures

I am so glad everyone is healthy and happy

Take care

Dawn

Dear Gang,

I put some pictures on our website (an album in the photo section) to

explain why I have been so quiet on the list lately! My niece just

had a baby. The first two photos in the album show a group of us when we

went to visit her in the hospital. She is in the foreground, holding baby

Jake. I'm at the far right, and Owen is in the background making faces. My

mom and dad are in the picture (you'll be able to tell who they are) and

also my sister Carol, 's mother, and her other daughter Jody (in back

next to Owen). Just before Jake was born, several other family members came

to visit: my sister from Arizona came with her 8-year-old daughter, and my

niece who lives in Brazil came with her two daughters, 8 and 2 years old.

And the visiting isn't over yet! In a few days, my sister Carol's husband

will arrive, then 's husband's parents will be coming from Arizona for

a few days. Life has been very busy lately, but fun.

The second photo, taken at Christmas, shows how Owen outgrew me this past

year! I know that many of you have reached this milestone too.

I've been reading all the posts but not responding to very many. So

congratulations, Roxanna, on the successful outcome of your hearing, and I

hope Lindsey is OK, Tammy. Fania, you deserve praise for being so

consistent. Dawn and Kathy, wish I could have joined you for lunch!

Melinda, how is Tom getting along? Angel, I hope things are working out

with 's new teacher. Gail, did you get back from the beach already,

or are you posting from there? Welcome to all the new members. This is a

great group! I know you'll enjoy joining in.

Love to all, Jill

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OH JILL !!?!?!?!?!?!

I need help with some of that.

in a nutshell - what is this??

Dawn

Another request you can make once

he has been ruled eligible for special education is a functional behavioral

analysis, followed by a positive behavior plan, as provided for in the

Individuals with Disabilities Education Act (a federal law). If you need

more information about this, just ask.

Good luck!

Jill

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  • 3 weeks later...

When my dd was about 15, she coined the phrased hmpu to describe dh and me. It

stands for " high maintenance parental

unit. " LOL

Liz

" D & A@Dayton " wrote:

> She is very bright, and was what you might call a

> " high-maintenance " child -- Jill

>

> Jill

> That is funny!! That is how I refer to Bradley. high maintenance

> Dawn

>

>

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  • 2 weeks later...

Now we're off to pick up my daughter at the BWI airport for one of her rare

visits home!

Jill

Jill

Have a great visit with your daughter!!!!!

I know how happy you must be....

Dawn

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Jill

how nice is that??

it is wonderful that you two Moms are so understanding and just take

it all in stride.

Most people would find their behavior rude and unacceptable but as

we all know - this is how Aspies can be.

I have worked with Bradley and his manners for so long - that I can say

he is the rudest polite boy I know. hahahahahaha

even though he has the programmed responses, sometimes the delivery

is bad or he is very " determined " when saying them.

When he was little, if someone would sneeze, he would say " Bless you "

then they say " thank you " and he said " your welcome "

Well - when he would sneeze and someone said " Bless you " he would say

" thank you " and they were SUPPOSED to say " your welcome " -

Unfortunately, some people did not! so he would say very loudly, " THANK

YOU! " and some people would say " your welcome " with a strange look on

their face and other unsuspecting people would just have the strange look.

So - he would say VERY LOUD " THANK YOU!!! " because in his mind, it

wasn't finished. Some people would say " OH - your welcome " but some

people would just walk away. LOL!!!! I would tell Brad to stop - but boy -

is

he tenacious. " They didn't say your welcome. Don't they have any manners?

Didn't their Mother teach them manners?? "

so after 3 long years, i finally got it through his head that it is rude to

make a

big deal out of them not saying your welcome and now he just shakes his head

and tells me quietly, " they sure didn't bring their manners "

OH - these kids are so fun!!!

Dawn

I have a close friend whose daughter has Asperger's syndrome. She even

lives nearby -- about four houses away. How unlikely is that?! It's great

that we can support each other and understand each other's children -- even

though they are not very much alike in their interests and personalities.

But when her daughter gets up from the table as soon as she has finished

eating (at my house) and asks to go home, I'm not insulted, since I know

exactly what's going on. I know that I can ask Kate for a hug, but not

suddenly hug her without warning. And when my son walks into my friend's

house without saying hello and looks around for the computer, she

understands. She even encourages him to be more independent -- when I am

still trying to shelter and protect him as if he were a much younger child!

Jill

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ROTFL!

a

" They didn't say your welcome. Don't they have any manners?

> Didn't their Mother teach them manners?? "

> so after 3 long years, i finally got it through his head that it is

rude to

> make a

> big deal out of them not saying your welcome and now he just shakes

his head

> and tells me quietly, " they sure didn't bring their manners "

> OH - these kids are so fun!!!

> Dawn

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>

> Jill

> how nice is that??

> it is wonderful that you two Moms are so understanding and just take

> it all in stride.

> Most people would find their behavior rude and unacceptable but as

> we all know - this is how Aspies can be.

> I have worked with Bradley and his manners for so long - that I can

say

> he is the rudest polite boy I know. hahahahahaha

ROFLOL!! Funny. I have been trying to teach my kids to say God

Bless You forever. But they are just not aware enough of what

someone else in the room is doing to notice when someone sneezes

(unless of course they happen to be blocking the TV screen or

computer screen!! LOL!)

Still, I just keep on trying.

I sneeze

Silence.

I say, " What do you say when someone sneezes? "

Them: silent

Me(louder now) " WHAT DO YOU SAY WHEN SOMEONE SNEEZES? "

Kim: " Oh, sorry Mom. God bless you. "

Me: Thank you....ERIC???

: " Huh " Oh yeah, God bless you. "

Me: Thank you. Braden?

silence

Me: BRADEN???!!

Silence

Me: BRAAAADEN!!!!!!!

Braden: What?

Me: " WHAT DO YOU SAY WHEN SOMEONE SNEEZES???? "

Silence.

Me: BRADEN!!!!!!!

Braden: " What? "

Me: " SAY GOD BLESS YOU!!!! "

Braden (muttering): God bless you.

I try not to sneeze too much.

Kathy ;)

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  • 3 weeks later...

<I'm sorry to hear that the risperdal doesn't seem to be working .

The licking behavior makes me worry. Also the weight gain -- this doesn't

sound like something you can safely ignore.>>>

I know, that is why I keep posting about it, and " collecting " responses, I

have my doubts.

<<<I hate to sound like a broken record, but did anyone ever suggest one of

the

tricyclic antidepressants for him?>>

never.

I took him tonight for pizza and had a quiet talk with him. I was trying ot

understand what he feels at school just before the outbursts. waht came up was a

lot fo stress from teh EXPECTATIONS taht he'd be ok. I asked him if he felt he

could curb the outbursts by making extra effort, he said he could curb it by 805

(typical answer. give him statistics and numbers!!). he said that he thinks the

new dosage of risperdal is helping him somewhat with preventing him to hit, but

that it is also making him so tired and sleepy that he can't concentrate at

school .

I will have to check with the psycht again.

F

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<<<<< he said he could curb it by 805 (typical answer. give him statistics and

numbers!!).>

it should have read 80%

but 805 would have gone fine with te pokemon power degrees, no ?

:-)

F

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  • 1 year later...
Guest guest

In a message dated 4/17/05 12:52:56 PM GMT Daylight Time,

jb_sings@... writes:

I am new to the group here and have been reading the

responses to your initial post.

Hi Jill,

I can't remember if I have already welcomed you to the group. I am

struggling to keep up with the posts just now. (I don't know why I am saying,

" just

now " because that is always the case nowadays! lol Anyway, if I didn't,

Welcome! and if I did just ignore me. lol

Right! Who said, " Everybody else tries to ignore him " come on, who was it?

lol

Take care,

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  • 7 months later...

Jill, I'm with you..Every time I'm out and about and I see a heavy person

suffering, I just want to run up to them, put my arms around them, and tell them

that it DOESN'T have to be like this. I am MUCH more sensitive towards the

obese now than when I was still pre-op and I dont know why. Blessings

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  • 6 months later...
Guest guest

Hi Jill,

Thank you for the welcome! Can you tell me more about Logan? I've only

just heard of apraxia two days ago, and I'm trying to understand it.

You mentioned that Logan didn't start communicating verbally until he was

over 3...can you tell me what that was, how he sounded when he did start

communicating that way? You mentioned that he was doing well now, but that he

was

diagnosed with apraxia. I'm not sure if you meant his overall healthy is good

or that he's communicating well verbally now? If that's the case, can you

tell me how the apraxia influences his life now, at 4 years old?

Thank you so much for taking the time to answer my questions. Claren hasn't

been diagnosed with apraxia...no one has even mentioned it to me, but the

symptoms sound very similar to my experience with her. I am going to mention

it to her speech therapist on Monday and her pediatrician in July....I'm

assuming I should ask for a referral to a neurologist?

Thank you!

Brandelyn

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  • 1 year later...
Guest guest

Ah Jill- Your post breaks my heart. None of it seems fair does

it? " Why me? " is what I always think. Both of my knees and hips are

shot (from cheerleading for 10 years!) Then, I got blown over by a

snowboarder a few years ago, and have to have one of my knees

replaced. I also deal with the scoliosis, torticollis in my neck, and

had excuritiating pain on the left side of my body (which was

diagnosed as fibro last year.) Not to mention the implant mess!! I

can't say that I haven't thought of ending it all too. It goes beyond

the pain for me, its the brain fog, the fatigue, the malaise that has

given me very poor quality of life.

Do you think your back problems were caused from the horse jumping?

You still have so much life left you! That's what I have to keep

reminding myself. We are young. On top of that, I've heard that every

365 days the cells in our body turn over. That gives me hope, and I

hope it does for you too!

Just keeping looking to the day when you can go through an entire day

without thinking about the pain...you WILL get there!

Love, Krista

>

> >Jill,

> >

> >I have FM also . . . However, as long as I follow

my " program " . . .

> >sufficient deep sleep, moderate exercise, regular massage,

healthy

> >diet, plus stress and anger management, I wouldn't know I had it.

> >

> >It takes a while to work out your own " program " . . . but it's

well

> >worth the effort.

> >

> >You can get past it! . . .

> >

> >FM is a syndrome, not a disease. A Syndrome is a collection of

> >symptoms that have enough in common to be given a name. FM

appears

> >to be triggered by a number of things . . . Accidents, illness,

> >death, divorce, stress, etc. . . What the " things " have in

common is

> >something that deprives one of sleep for an extended period.

> >

> >I hope you saw the 60 Minutes show. . . They said that sleep

> >deprived brains mimicked those of psychotic people. . . They

also

> >said that one thinks they are still functioning, even though

they

> >are sleep deprived. . . Speaking for myself, I agree 100%!

> >

> >Hugs,

> >

> >Rogene

> >

> >

>

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  • 1 year later...
Guest guest

Margaret thank you very much, your response moved me to tears, and your emotions

and feelings mirror mine exactly. Have just received a wedding invitation for

end of May in Ayr , and am looking at sorts of excuses to get out of it (

terrible I know), the love and support I find here is tremendous but I know I

won't find it at that wedding because there will be people there I know ( and a

terrible thing to say ) I haven't seen for a while that will take great delight

in the way I have gone downhill ( and they are women isn't that terrible..?)

Anyway have received lots of love and support, yourself included and am taking

great comfort in that.

god bless

Jill

XX

PS Back at ya..

>

> Hi Jill

>

> Marg here just got chance to write.I am older than you but feel the same.My

fab hair is dull and thin and lank.I look haggard puffy ill and very very tired

and old.I have always looked after myself and my weight which no amount of

dieting and exercise will shift.I avoid mirrors like the plague.I use to think I

was quite nice to look at and now I see this ugly women is shop windows and

cringe coz its me.I have suffered this illness for 18 years on Thyroxin.The last

10 weeks have changed to Armour, which I am hoping will help.I too cant bear

going out and have a big family do on Sunday and am dreading it..You are still

young enough to sort this Jill

>

>

> I think your fab anyway xxxxxxxxxxx

>  

>

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