Re: Introductions..

[Guest guest]

and Doug,

Welcome! Bob and I are new to this list also - we've been here almost two

weeks - and I can tell you that it is such a tremendous relief to find this

group of people. We dropped out of our local support groups and on-line

groups because we just couldn't relate anymore - our child was so very

different. In the short time I've been on this listserv, I almost can't

believe how much I have in common with the other members. To find people

whose children act like my daughter and who feel like I do about these

challenges is wonderful. I have learned so much already. Thank you to

everyone on this list!

It sounds like we are at very similar places in our journies with our

children. We too are in the process of having our eight year old daughter

evaluated for autism/PDD. When she began her " unusual " behaviors

several years ago, I brought up the possibility of autism, but all the

professionals in her life said no. She was later diagnosed with ADHD and

bipolar disorder (manic depressive illness), and has been medicated for those

for the past 2 1/2 years (solved the sleep problem, but did nothing for

behavior). Now that Bob and I have the information on the dual diagnosis of

DS-ASD, we now believe that is what she has. We are going to see her doctor

for an evaluation on Feb. 8. We have already unofficially received an

educational diagnosis of ASD from her school staff - she definitely fits the

criteria. We think we have finally found the missing piece of the puzzle and

are anxious to get her off the bipolar meds.

It's good to know that we are all on this journey together and can support

each other. Looking forward to hearing from you on the list,

Maureen

[Guest guest]

Dear and Doug

Welcome to this list. IT is a wonderful place of support, humor and

sharing frustrations.

Good luck with your upcoming evaluations.

There are lots of people on this list who are very knowledgeable.

It sounds to me like you are on the right track.

I'm , mom to Matt who is 9 and dx with " autistic behaviors " at age 4

1/2.

S

Mom to 16, Marie 15, Dan 14, 10 and Matt 9

(hubby Jim, if you want to count him, too. Plus Elvis and Queenie-dogs)

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[Guest guest]

In a message dated 1/30/2000 2:54:38 AM !!!First Boot!!!, filbert4@...

writes:

<<

Anyway, we are pleased to connect with you folks. We look forward to

learning more and sharing ideas with you.

and Doug >>

Hi and Doug,

Welcome to the group!!! Your little girl sounds just like our Maddie (6,

DS and ASD), cept Maddie hasn't quite made as much social progress as Evie.

But I have hope. I think you'll love this list. We're all great friends and

it feels wonderful to actually talk to people who are living similar lives.

I'm looking forward to hearing more about you, Evie and your whole family.

Donna (Wife to Joe, Mom to (18), (16), n (14), Alison (7),

and Madison (6, DS and ASD)

[Guest guest]

Dear and family...a big welcome!!! Great~ another little girl!

Finally I have met another mom with a puzzle piece and book stacker.

loves to do this and has developed it into quite an art. She

stacks these huge structures of books and puzzle pieces into tall towers

in front of the TV screen and leaves a tiny hole to watch her videos.

LOL They are things you would never in a million years think would stay

balanced. Then every once in awhile we hear a huge crash and we know it

is time for reconstruction. She and Evie would have a wonderful time

together. I finally had to put all my good books under lock and key and

allow her to have a big stack of her own. As she has grown she has

become less and less enthused with the skinny children's books and

enjoys giving herself some real deep pressure exercize by carrying

around the PDR and Webster's Dictionary. Unfortunately she nearly

amputates a couple of toes every time she shoves them off the desk. She

has to have a few special books and puzzle thingies with her to go to

bed (whatever happened to stuffed animals??........well, actually you

don't want to know what she does with stuffed animals:-) And no matter

where we go she is not satisfied until she has redecorated everyone's

bookcases and has all the books going up in stacks and not standing up

side by side like most dumb people put them. She's really fun to take to

the library. Does Evie like to stack videos too? is just getting

into this skill.She likes to block up her bedroom window with videos and

when these things get shoved to the terrazzo floor it's enough to make

you slam your head on the table.

haha~ does it sound like you're in the right place? Welcome to Mars!! I

bet Evie has all the missing pieces from 's puzzles and vice versa.

Anyway, welcome and hope to hear lots more about the new little

bookstacker. Sherry in Florida, mom to , eleven, DS/autism and RWS

(that's rewinding, as in videos, syndrome~ many of our kids also have

this:-)

[Guest guest]

Hi!

My name is Marina and I just joined this wonderful

group. Finally!! I've been so lost in the past three

years!

My son Luca is three years old, and has a VERY strange

and obscure form of Down Syndrome, and a VERY strange

form of PDD. How about that!

He was diagnosed with Mosaic Translocation DS when he

was about one year old. Before this diagnosis, we had

noticed that he never looked at us. Never has, since

he was born. The local EI suggested an EEG, after a

couple of months of physical therapy. The EEG turned

out to be abnormal: it seemed like Luca had a seizure

every minute. Of course, he never had seizures, but it

seemed like he did from the EEG, From there, we

started him on a heavy dose of Phenobarbital, and a

myriad of tests. Eventually, a friday afternoon, the

phone rings, and it's his pediatrician: " We got the

results back: he has a form of " partial " DS. I don't

know what it is. Go check on the Web. " Needless to

say, we were devastated. But the major problem was

trying to figure out why he is not looking at us.

Eventually, we went to see doctor Serena Weider, in

Washingto DC, and she agreed that Luca has some

autistic-like behaviors. We started to do some floor

time therapy all the time. We just started some ABA

and to use PECS ( in addition to sign) for

communication. Anyway. I'm looking forward to learning

something from you and your children.

We are living in Cambridge, and Luca is enrolled in a

great program for children with PDD ( eventually he

was diagnosed, but with a lot of conviction). Soon

we'll move to NYC. Any suggestions for good schools?

Marina, mom to Luca (MDS and PDD) and Sofia

P>S> I'm sure you have talked to my husband Dan...

__________________________________________________

[Guest guest]

marina,

where is this dr. weider at in dc, i live about 15 min from there and am

always in the lookout for a great doc.............. is she at georgetown or

howard or childrens.............. thanks leah

[Guest guest]

In a message dated 1/11/2004 9:39:29 PM Pacific Standard Time,

Grannyof9@... writes:

(I know, you all are sleeping and will

read it in the morning....over coffee....and say to yourselves...is she

really all there?

Granny, I LOVE you!

Thank you for the smiles!!!

Adrienne was filling out one of those forms the other day, in prep of seeing

Another Rheumy and... I recall when we first signed onto the list... comment

by some about how on those forms of 'medicines used previously' some would have

circled nearly Everything there...Well... We are approching that now! It was

like...why not just circle the entire box and cross out the couple that have

not yet been tried?

Adrienne is suffering with an overuse injury from Sept that STILL is not

healed. It is in her ever wonderful ankle.... Again. She has been wearing a

boot, one of those medical ones, since October. She has had a cortizone shot in

the joint, she has done a pred dose pack, she is now changing anti

inflamitories every two weeks to try to 'boost' her body into reacting and doing

SOMETHING

GOOD for that ankle.

Her tremors seem to have increased, which tears my heart to see.

She has even had a couple break downs, to tears and and the 'why me'. It has

been a rough fall. While filling out this latest form, She asked if the

break downs, which lasted an evening each and one really scared me, counted as a

nervous breakdown. I told her, I don't think so... But maybe I am wrong? What

is the difference between a nervous breakdown and an emotional break down?

Anyway, she is back at the UW and taking a lighter load this quarter, down

from 18 credits to 13 I believe it is. What ever one credit over full time is

considered. She was 'removed' from her private voice instruction due to

'making room for music majors' which she is not, and she believes most the

reason

was that her voice was not doing well for finals...she was in the midst of the

prednisone dose pack and that had an affect on her voice. Being dropped had

an affect on her otherwise. The " kind " instructor sent her an email telling

her she was dropped... on Christmas Day...Merry Christmas to Her too!

On the doctor front, Adrienne has an awesome Neurologist who was a pharmicist

prior to going into neurology. She manages Adrienne's medications except for

her thyroid stuff. Had a run in this week with the nurse yelling at Adrienne

for listing this doctor as her 'primary'. Then the nurse called me and left

a message stating that this doctor ONLY sees Adrienne for her headaches. I

told Adrienne call and Make an appointment with the Doctor and bypass this

nurse! Adrienne did call, made an appointment, and somehow ended up chatting

with

this bulldog again. Finally the bulldog said, " I will have to have the

doctor call you back " (I am thinking Duh!!!) Adrienne did get the prescription

taken care of that was needed and will be seeing the doctor in a week or so.

Anyway, it has been an interesting fall, now on to winter quarter.

I too look forward to 'meeting' the folks who have just signed on.

Welcome to the Group!!!

K

Adrienne's Mom

Adrienne diagnosed at age 15 with undiff spondy. Currently 20, Full time

student at University of Washington, Spondy, Hypo Thyroid, Fibromyalgia, Chronic

Fatigue, HLA-B27+,

Meds include Synthroid, Cytomel, Ciproheptadine, Prozac, Trazadone, Eye drops

as needed, some different anti inflamatory this week, was Celebrex for past

couple years.

Active with Music, Bassoon, and Piano and Singing, And musical Theater, and

dance as she can, formerly loved Track, now races across campus from one class

to another attempting ten minute miles...with the boot in the rain and slush

and sometimes snow..

Overall, she remains a very cheerful, wonderful upbeat young woman. Most

her friends don't realize she has Arthritis, unless she tells them.

Although...all are noticing this boot attachment that isn't going away.

[Guest guest]

In a message dated 1/12/2004 10:59:43 AM Pacific Standard Time,

jturner@... writes:

sulfasalazine or Enbrel?

you know, I can't tell you. She was on sulfasalazine for a while... then

when she was put on celebrex, she was taken off it.

Maybe I can ask about having that re instated into her meds. I know it

takes months to become affective. But maybe?

And the tremors... no idea why she has them...maybe too much caffine...but

she has had them mildly for ages...and they just seemed more so this weekend

when I saw her.

K

Adrienne's Mom

[Guest guest]

Adrienne's Mom,

I'm sorry I don't remember, why does Adrienne have tremors?

I'm also wondering why she isn't on a disease-modifying anti-rheumatic drug

such as sulfasalazine or Enbrel? I started having the heel and ankle

problems at age 10. I really wish I had had the benefits of these drugs

earlier. I spent years and years in those dad-gummed stupid boots (walking

splints, whatever they're called), and I would have been so much better off

if I could have had the disease-modifying drugs sooner.

God Bless,

Janet in SF

ReA since 1973; diagnosed 1997; HLA-B27+