Re: Another Vent.......& long

[Guest guest]

In a message dated 7/15/100 4:02:23 PM EST, jmedlen@... writes:

<< Did you ask the physician what therapeutic options you have? What was he

willing to invest in time and effort in assisting you? Did he offer any

pharmcological suggestions?

I'm disappointed *for* you.

Joan >>

Hi Joan,

The Dr. who evaluated was highly recommended and well known for working

at the clinic. He said that needed a communication expert, not just a

speech therapist. Someone who would sign, use his Superhawk box and do

regular speech. He gave me names and numbers for that county. I'm in the

process of trying to find people with the same expertise in our county. I

also have to have referrals for everything so I am learning how to use my

insurance. I hope that when I get the typed version of the eval there will be

a diagnosis on it and that he forgot to tell me what it was when I was there.

The Dr. did say that he would like to see yearly and that I need to be

a better advocate for . He didn't like it that 's ped. had not done

any testing on him and only treated him when he was sick. It's only been the

past year that he's been pretty healthy and I didn't notice that he wasn't

getting the preventive medical treatment for DS. Somehow we always manage to

fall through the cracks. I think a lot of that happens because I am usually

too overwhelmed by everyday living with someone like and just life in

general. I also have to work full time outside of the home. But with the new

list of things for us to try to get for we may finally get somewhere.

At least it's a start.

Judy

[Guest guest]

Did you ask the physician what therapeutic options you have? What was he

willing to invest in time and effort in assisting you? Did he offer any

pharmcological suggestions?

I'm disappointed *for* you.

Joan

[Guest guest]

Judy,

Sorry to hear that your appt. was such a bummer. Our first on was simular

to yours. Keep on plugging like we did. It took another year to get the

autism dx. Now all the doctors have joined the bandwagon (Oh yes, of course

he autistic).

Call the doctor you saw. Ask him to make recommendations in his reprt for

the things he thinks your son should have. Our dr. recommended speech 5

times a week for 45 minures each time. We were able to get 30 min. x 5

days. Also Sensory Intergration. The schools should be able to help

inpliment this.

Sorry for the typos--5 kids are jumpong ont he bed behind me and several are

trying to grab my arms--aren't kids great.

Hang in there...

& Garry, parents of (9 ds), (8 ds/g-tube), JJ (6

ds/autism/celiac), (5 ds), and Esther (3 ds). All adopted.

[Guest guest]

JUDY,

hugs, hugs and more hugs!!! ben and jerry's ben and jerry's coming your way

or godiva or gurdelli.......... i am so sorry you have had a crapty

month.......it seems to be like the " epidemic'!!!!!! we are all having our

share of it thid month and over the summer period....... i cant believe this

doctor was so uncuth...... it just blows my mind, but then again look at the

bowel movement laura had that said sean needing to be ready! whatever, or

look at my own ashton, five different freaking diagnosis and no doctor agrees

with the other......go figure on that one...... and the itit eye doctor lori

saw..... sorry if i cant remember all the others.....lmao but its like a

trend of ignorance in some of the medical community......and unfortunately we

the parents are the ones who have to pave the way to educate them on spec

needs............. judy hang in there and i hope you find someone

compassionate and educated that can truly help you.....hang in there

girlie,,,,,,,,, we all can relate very dearly to what it feels like to be

down in the dumps......take care, leah

[Guest guest]

nancy,

i love the 5 kids jumping on the bed, could be 5 monkeys heheh lets just hope

one dont fall off and break his head, we used to sing that when we were

little........

[Guest guest]

Judy,

We have had very similiar experiences with Brook, 10 yrs. Luckily for us

last year when we took Brook to his eye Dr.,who had to get on the floor and

examine him there, the Dr. found he no longer needed glasses. To tell the

truth we couldn't get him to wear them for more than a few minutes at time

because he would fling them off all the time. Since it turned out he didn't

need them that is another reason good reason why he didn't want to wear them

besides he hates anything on his head! We do have another eye Dr. appt coming

up soon too and I sure hope he doesn't need glasses again.

As far as the appointments go I dread all of them. Tomorrow we have a

dentist appt and I am going to try and give him some valium before we go. I

tried it before and it didn't work. This time I'm giving him a little bit

more. We end up doing the papoose board and he's crying and screaming the

whole time.

We have been successful using time outs with Brook for aggressive

behaviors in the past. He really didn't like having to sit in the chair. It

made him sad is the best way I can describe it and it did work.

We also have his neurologist appt coming up soon for the seizures

which has always been a doozy as far as controlling him in the exam room. He

fights us to turn the water on in the sink and spray it everywhere. I'm

planning on running the autism diagnosis by his neurologist to see what she

thinks. Usually these appts are wrestling matches. Brook is also nonverbal

and he doesn't use any sign either and will whine and cry and try to get out

the door etc. My husband usually comes to most of the specialist appointments

because it is just too difficult but I get to do the dentist by myself

tomorrow. Sorry things have been so disappointing and difficult for you but

most of us have been there too and we can really empathize with you.

Marisa

P.S. Where do you live again? Are you in the SF Bay Area?

[Guest guest]

In a message dated 7/18/100 1:00:30 AM EST, poggim@... writes:

<<

Marisa

P.S. Where do you live again? Are you in the SF Bay Area?

>>

Hi Marisa,

I live in Pennsylvania.

Judy

[Guest guest]

Judy,

We've had the same problem with and glasses. She went through five

pairs of lenses because she would take them off and either throw them across

the room or scrape them on our brick hearth! The eye doc told us a similar

thing about her wearing them someday when the correction is enough for her to

appreciate, which hasn't happened yet. We had to give up because it was

becoming another behavior issue, which we certainly didn't need. We'll

probably try again in the future. Sorry to hear you're having such a

difficult time. Hang in there,

Maureen