Hi everyone!

[Guest guest]

- wonderful letter! So glad things are beginning to work for you.

Who knows - Katelyn may decide to be an OT! My daughter, from going to

therapy with ELie, decided itwas so cool to get paid for playing with

babies, made this her lifes work. Benefits unseen are still benefits.

>

> Hi everyone new and not so new. I have not posted in a long time. Too

> much going on with the kids home and DH off work, many appointments,

> trying to keep up the yard and make the house livable, plus I was

> sick flat in bed for several days a couple weeks ago and still not

> quite back to normal. Just thought I would post an update.

>

> Katelyn (11) is in the midst of being evaluated for a definitive dx.

> She currently takes clonidine, strattera, and desipramine. So far the

> psychiatrist quickly noted that she has a lot of attachment disorder,

> but not full-fledged. No surprise. He still has to go through all

> the forms Katelyn and I filled out and get to know her better before

> assigning any other letters to her besides ADHD. We waited since

> February to get in with him and so far I am feeling grateful to be

> there. He is a good listener and very observant and has a great way

> of drawing Katelyn out to respond to his questions. We will decide on

> the proper meds once he sorts her out.

>

> Katelyn said she felt embarrassed talking to him, but she was ok with

> it. She only has a few more visits left with her counselor and that

> concerns me unless we get more visits allotted so she will have

> someone to check in with when she needs help sorting things out and

> coping with the challenges of every day life. I am hoping she will

> somehow learn that it is ok to act and dress like other kids and it

> is cool to be properly groomed! More than that, I am hoping she will

> get over her contamination issues around Janie.

>

> Janie (8) has a new official dx of social anxiety added to her list

> (DS/ADHD/PDD-NOS). She has been seeing a great OT this summer who has

> given us some tools to use for dealing with Janie's sensory issues.

> We are seeing that if we give her lots of physical input such as

> bouncing her around in her " cave " swing, she will do puzzles and

> other activities she would otherwise not sit still for. I am hoping

> the school will carry on this technique in order to increase her

> academic development. Her needs assessment should be completed by the

> beginning of October when we are scheduled for an IEP meeting.

> Hopefully the new IEP will not be as challenging to agree on as the

> last. BTW, we did get 6 hours (1 hour 2x/week for 3 weeks) of 1 on 1

> school this summer. Not much, but it broke ground into dealing with

> resistance from the district to accommodate Janie's need for year-

> round routine.

>

> We have been working with wrap-around services through Catholic

> Community Services and have made a lot of progress with Janie's

> behavior, plus making some minor med changes. I would like to

> continue wrap-around after our 90 days is up, but have to find a

> facilitator. I will talk to the school about that. Also, we still

> have to find a med for the social anxiety. Benedryl used to help, but

> does not seem to any more. She currently takes geodon (10 mg in the

> AM, 10 mg any time needed after 3 PM, and 20 mg at bedtime),

> trileptal (1/2 tsp AM and 1 tsp PM) for seizure control, and

> trazodone (75 mg at bed time). Her 36 hour EEG at home showed no

> seizure activity and her tics are not seizure related. We may begin

> weaning her off the trileptal soon.

>

> We are now on a waiting list for the ARNP in the same office as

> Katelyn's psychiatrist and the developmental pediatrician. We could

> not even get her on the waiting list for the psychiatrist, but the

> ARNP works very closely with him and if needed she will be able to

> see him through the back door.

>

> Two major issues got solved this summer – Janie running out of the

> back yard and across the street to get into everyone's mailboxes and

> Janie not keeping her seatbelt on. Our back yard got fenced and we

> got a E-Z-ON safety vest for the car and stroller. DH just got a new

> job. Big relief! Also, Katelyn found out by attending Janie's OT

> sessions that it can be a lot of fun playing with her! So for now

> things are going pretty well. I look forward to school starting

> September 4 so I can have some " me " time.

>

> I apologize to all who needed support who I have not been there for

> lately. Even though I have not posted I have prayed for those who

> seemed to need it and rejoiced for those of you who are having good

> things happening. I will try to stay on top of things better.

>

> P.

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

,

It sounds like you have been making some great progress with the kids and life

in general. We put our fence up this past year and it has really made a

difference. Jake has more freedom. Freedom found out about the water hose and

faucet so we are in the process of taking those off! He kept coming in wet!

ha! He loves the hose though!

School starts for us in 2 weeks. I am anxious to see how Jake does this year.

Also a little stressed since we had such a rough last year.

Holly

Hi everyone!

Hi everyone new and not so new. I have not posted in a long time. Too

much going on with the kids home and DH off work, many appointments,

trying to keep up the yard and make the house livable, plus I was

sick flat in bed for several days a couple weeks ago and still not

quite back to normal. Just thought I would post an update.

Katelyn (11) is in the midst of being evaluated for a definitive dx.

She currently takes clonidine, strattera, and desipramine. So far the

psychiatrist quickly noted that she has a lot of attachment disorder,

but not full-fledged. No surprise. He still has to go through all

the forms Katelyn and I filled out and get to know her better before

assigning any other letters to her besides ADHD. We waited since

February to get in with him and so far I am feeling grateful to be

there. He is a good listener and very observant and has a great way

of drawing Katelyn out to respond to his questions. We will decide on

the proper meds once he sorts her out.

Katelyn said she felt embarrassed talking to him, but she was ok with

it. She only has a few more visits left with her counselor and that

concerns me unless we get more visits allotted so she will have

someone to check in with when she needs help sorting things out and

coping with the challenges of every day life. I am hoping she will

somehow learn that it is ok to act and dress like other kids and it

is cool to be properly groomed! More than that, I am hoping she will

get over her contamination issues around Janie.

Janie (8) has a new official dx of social anxiety added to her list

(DS/ADHD/PDD-NOS). She has been seeing a great OT this summer who has

given us some tools to use for dealing with Janie's sensory issues.

We are seeing that if we give her lots of physical input such as

bouncing her around in her " cave " swing, she will do puzzles and

other activities she would otherwise not sit still for. I am hoping

the school will carry on this technique in order to increase her

academic development. Her needs assessment should be completed by the

beginning of October when we are scheduled for an IEP meeting.

Hopefully the new IEP will not be as challenging to agree on as the

last. BTW, we did get 6 hours (1 hour 2x/week for 3 weeks) of 1 on 1

school this summer. Not much, but it broke ground into dealing with

resistance from the district to accommodate Janie's need for year-

round routine.

We have been working with wrap-around services through Catholic

Community Services and have made a lot of progress with Janie's

behavior, plus making some minor med changes. I would like to

continue wrap-around after our 90 days is up, but have to find a

facilitator. I will talk to the school about that. Also, we still

have to find a med for the social anxiety. Benedryl used to help, but

does not seem to any more. She currently takes geodon (10 mg in the

AM, 10 mg any time needed after 3 PM, and 20 mg at bedtime),

trileptal (1/2 tsp AM and 1 tsp PM) for seizure control, and

trazodone (75 mg at bed time). Her 36 hour EEG at home showed no

seizure activity and her tics are not seizure related. We may begin

weaning her off the trileptal soon.

We are now on a waiting list for the ARNP in the same office as

Katelyn's psychiatrist and the developmental pediatrician. We could

not even get her on the waiting list for the psychiatrist, but the

ARNP works very closely with him and if needed she will be able to

see him through the back door.

Two major issues got solved this summer - Janie running out of the

back yard and across the street to get into everyone's mailboxes and

Janie not keeping her seatbelt on. Our back yard got fenced and we

got a E-Z-ON safety vest for the car and stroller. DH just got a new

job. Big relief! Also, Katelyn found out by attending Janie's OT

sessions that it can be a lot of fun playing with her! So for now

things are going pretty well. I look forward to school starting

September 4 so I can have some " me " time.

I apologize to all who needed support who I have not been there for

lately. Even though I have not posted I have prayed for those who

seemed to need it and rejoiced for those of you who are having good

things happening. I will try to stay on top of things better.

P.

[Guest guest]

Hi, I'm a, I'm 45 years old, I'm a psychologist and I live in Munich (which means in the south of Germany, in Bavaria) with my husband and my two children.

Our twins, named Oskar and were born on september 17th 2007 and they both have DS.

I came across this group by chance, just by getting to "know" one of your older members, I think she's in this group for quite a long while now... ;-)

And I'm really looking forward to discuss and share experiences and "expert know how" with all of you, especially with those of you who have identical twins with DS!!!

Best regards and a lot of warm greetings from munich, yours aP.S.: I hope my english is ok so far? To get understood?? ;-))

a Scharf Diplom-PsychologinBeratung, Coaching, TrainingBauschweg 18 80999 München 0172 - 67 19 003

one of your