Diagnosis process

[Guest guest]

Hi ,

My son, , age 9, is completely nonverbal and he signs very little. He

has a Superhawk Talker, which he uses a little in school only, and he does

very little with PECS. Years ago I had him evaluated at the Children's

Seashore House. wouldn't cooperate with the doc or look at her. All he

did was hand me our coats to leave and in the end he turned his back to all

of us and looked at the wall. My heart broke. This doc told us at the end of

the visit that had autistic tendencies. My ped would dismiss a lot of

's behaviors, good or bad, to autism. Last year I took to a DS

clinic in our area. That doc didn't seem to think was truly autistic. I

had reevaluated later at another doc to get other services and that doc

said was autistic, but said for insurance purposes its called Pervasive

Developmental Disorder. did nothing for this eval, didn't utter a word,

didn't play with toys of the docs, didn't do more than sit on the floor and

look around. has always let it be known during every evaluation that he

didn't want to be there and that he wanted to leave. Now I see other kids

diagnosed with autism and I would never have guessed they had any problems.

I'm still in a fog even with this diagnosis.

Take care,

Judy

I shall pass this world but once; any good thing therefore I can do, or any

kindness I can show to any human being let me do it now. Let me not defer it

or neglect it, for I shall not pass this way again. -- Grellet

[Guest guest]

Hi there

We are still waiting for a " formal " diagnosis of autism following some more

evals.

Gabby was seen by a developmental psych this past Tuesday who observed her

for two hours. They played a bit, she asked her to do a few things. They

asked me to fill out some sort of autism screening questionaire. She came

back with a suspicion of adhd / autism but said that we would have to have

her seen by a pediatric neurologist and by an autism specialist through the

regional center. I believe that she said that if she would have had a 4 hour

eval done, she would have been able to diagnose her by herself. If I had

known I had a choice, I would have scheduled the 4 hour one. But I supose

it's better to have her seen by the neurologist anyways.

Gabby has no speech either. She began speaking at about 14 months and soon

therafter lost those words.

I think that the eval will definitly give you some insight. The psych we saw

actually said " I am just wondering why no one noticed this before now " That

made me feel bad since I should have been the one to notice her behaviors

and start asking questions but at the same time I wonder why none of the

other professionals suspected it. Since she was 6 weeks old, she has been

involved in Early Intervention, toddler school, and preschool.

BTW one quick question. Does anyone else's child wring their hands when

they're distressed or crying? I have just begun to notice this and it has me

worried (from the lierature I've recieved) that she may have Retts.

I hope you get some answers soon, . I'm pretty much in the same

situation you are.

Sandy

mom to le (5, DS) and Adam (1)

>From: " Darren " <jmedlen@...> (by way of Joan <jmedlen@...>)

>Reply-

>

>Subject: diagnosis process

>Date: Sun, 20 May 2001 17:34:31 -0700

>

>

>Hi All,

>

>I was wondering how exactly your children were diagnosed. Josh has little

>or no speech, depending on his mood. He certainly is unable to answer

>questions except at the most basic level. I guess I am just worried that he

>is being put into that autism box because of something other than autism.

>He has ADHD as well, so I wonder how we know what causes all the

>behaviours. Yet conversely I have thought that he could be autistic or at

>least OCD for the last few years, so I guess it is still that denial stage.

>I am sure you all have a different story but I would love to hear any

>input. Josh has not been formally diagnosed, we are still waiting for an

>appointment at the developmental clinic, but I would like to know what we

>might expect.

>

>I have talked with other parents of kids with DS and I get the feeling that

>since they don't know Josh that well they feel I may be over reacting to

>his behaviour. I hear things like " all kids have trouble attending to

>things at times " or " boys will be boys " , I know that there is more to him

>than DS bit then I wonder if perhaps they are right and my expectations are

>too high. Nothing seems to correct his behaviour, we can use all types of

>corrections and the behaviour continues, I can see nothing is connecting.

>

>I also want to say even though I have only been around a short time reading

>the mail has been really helpful. Knowing that I am not the only parent

>dealing with more than one diagnosis with Ds is something that keeps me

>sane.

>

> mom to Josh 8 DS/ADHD/?autism

>

>

_________________________________________________________________

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[Guest guest]

Ian had demonstrated autistic " tendencies " from a young age. I'd see him

rolling marbles around inside a box, or lining things up (for a while, we

had videotapes lined up all over our basement, end to end), or tossing a

plastic bag into the air to watch it fall (he still does this). When I'd

raise the issue with doctors, I got a mental pat on the hand, there there,

kind of thing -- overworried mom imagining things. Ian's inflexibility

began to cause real problems in our house, and our pediatrician sent me to

yet another doctor, who diagnosed the PDD -- and after a while, he threw up

his hands too and sent us to an autism specialist. The problem with this

specialist was that while she knew autism inside and out, she'd never had a

patient with Down syndrome before -- so she didn't recognize this particular

version of autism. It took her a few weeks to see the autism, and then she

apologized to us for doubting us.

Lately, I've been wondering about Tourette's too, and I have to ask if

anyone has any knowledge of Tourette's and its relationship to autism and

Down syndrome. Or is the ticcing and echalalia just part of the autism?

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

In a message dated 5/20/01 8:37:21 PM Eastern Daylight Time,

jmedlen@... writes:

> I was wondering how exactly your children were diagnosed. Josh has little

> or no speech, depending on his mood. He certainly is unable to answer

> questions except at the most basic level.

Hi ,

Maddie (7, ds and asd) was dx'd at the age of 5. However, the onset of

autism appeared at the age of 18 months. I knew she had it. Got lots of

guff from her therapists and teachers who refused to believe the two

conditions co-existed. But our pediatrician listened to me, supported me,

and did all he could to get to the bottom of it. Her school eventually

came around pretty quickly; one day I remember her teacher

saying... " There's something else going on here; this isn't normal " ....LOLOL

I have been taking her to KKI to see CApone since she was 2, but he

didn't dx her til she was 5. They felt she was too young at 2 and we just

sort of got by until finally, I realized that the dx would only help her.

Maddie has no verbal language and is very limited in communication. We are

at the beginning stage of PECS. She also has no understanding of any verbal

language. We talk all the time to her using one word hoping she'll

eventually get it (I could say the word swing til I was blue in the face, but

if I sign it, she gets excited). It's kind of funny. I went around for

the longest time saying to myself (and everyone else) that Maddie just has

autistic tendencies; not autism (as if that made it better).

One of the things that my dh and I thought was helpful, was actually

asking us the questions himself on the questionnaire. Just in terms of

sometimes *not being able to see the forest for the trees* kinda thing, ya

know. An example! I was just explaining this to a friend ;-) One of

the questions was " Does your child make any repetitive sounds " Both dh and

I answered no. looked down at Maddie and said... " What's that she's

doing now " ? I go... " OH That!! That's a click click sound she makes out

the back of her mouth " . Duff says.. " yea, she does that all the

time....24/7 " ............ just looked at us...we looked at each

other...and we all laughed. We were like... " that's just Maddie " ....LOL

Good luck and keep us posted!!!

Donna

[Guest guest]

In a message dated 5/20/01 9:08:14 PM Eastern Daylight Time,

writingawrong@... writes:

> .

>

> BTW one quick question. Does anyone else's child wring their hands when

> they're distressed or crying? I have just begun to notice this and it has

> me

> worried (from the lierature I've recieved) that she may have Retts.

>

Not here Sandy. But Maddie ALWAYS arches her back when she cries.

Donna

[Guest guest]

In a message dated 5/21/01 12:13:35 AM Eastern Daylight Time,

judykeller@... writes:

> has always let it be known during every evaluation that he

> didn't want to be there and that he wanted to leave. Now I see other kids

> diagnosed with autism and I would never have guessed they had any problems.

> I'm still in a fog even with this diagnosis.

> Take care,

> Judy

>

>

I Know Judy. I'm so glad they've changed the dx to autistic spectrum

disorder. Kids just do NOT fit the old label. I know a little boy who I

would say has a mild form of aspergers. He's never been dx'd with

anything, but receives speech therapy at school. His beginning years (he's

now 7) were extremely difficult on his family and he behaved very

inappropriately socially. He's better now, but still something is off.

He still does a little bit of the echolalia. His mom will say " , say hi

to Mrs. Duffey " ...and he'll say " Say hi to Mrs. Duffey " . Or for x-mas, he

asked for a certain toy " with batteries included " . He's an extremely

smart child. It's an incredibly confusing dx, for sure. Very hard to

comprehend.

Donna

[Guest guest]

diagnosis process

>

> Hi All,

>

> I was wondering how exactly your children were diagnosed. .

>

> mom to Josh 8 DS/ADHD/?autism

Hi ,

My son, is 11 years old. He was diagnosed with autism by a

Clinical Psychologist, a doc who is the medical director for developmental

disabilities, and an Applied Behavior Analyst. The tests that were used

were:

Autism Diagnostic Observation Schedule, Module I

Kaufman Brief Intelligence Test, Matrices Sub-Test

Test of non-verbal Intelligence-3

Gilliam Autism Rating Scale

Childhood Autism Rating Scale

They all agreed that he met the criteria for Autistic Disorder. None of

these

professionals had met a person with this dual diagnosis. I know the M.D.

researched info at Kennedy Kreiger Institute, and in his 30 years of

experience

was the first he knew about. They told me exhibits more

symptoms

of autism than are needed for the diagnosis.

Thanks and have a good day

Kathy

[Guest guest]

`A good number of the parents who attend our support group have kids with

autism. They don't act like JJ at all. The autism dx only seems easier

than autism/ds.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

[Guest guest]

In a message dated 5/21/01 1:58:38 PM Eastern Daylight Time, duffey48@...

writes:

<< But Maddie ALWAYS arches her back when she cries.

Donna

>>

LOL Seth always arches too Donna. Seth usually puts his hands together

like he's praying when he's upset. LOL Done that from the day he was born!

LOL He never misses any finger spaces either.

Gail

[Guest guest]

My son Marley was diagnosed by Dr. Lotspiech at the Children's Health Council

in Palo Alto California. He was tested by Dr. Lotspiech, a psychiatrist and

by a psychologist. The results were compared to the DSM IV and we were given

the diagnosis. We suspected because we had the opportunity to be around

many children with DS. Attend a DS National Conference. Marley was so

different then his same age peers with DS. He is inappropriately social.

But many children with DS are. Except Marley is withdrawn, sometimes doesn't

seem to know there is anyone else there. He has extreme sensory problems.

Hypersensitive hearing and tactual defensiveness, vestibular problems, etc.

But the most disabling was his inability to tolerate transitions.

Transitions from place to place, activity to activity, person to person. His

behavior was severe if the most minimal change was in effect. The diagnosis

has given Marley acess to behavioral, speech language, and visual

interventions that have really helped. Helping Marley organize his

environment has helped the way he interacts with others and the way others

interact with him. Hope this helps. mother of Marley age 10 DS-ASD,

Cas age 9, and Kira age 4.

[Guest guest]

In a message dated 5/21/01 10:20:10 PM Eastern Daylight Time,

smilinggail@... writes:

> LOL Seth always arches too Donna

Yet ANOTHER thing these two cuties have in common Gail!!! ;-)

Donna

[Guest guest]

In a message dated 5/22/01 5:50:16 PM Eastern Daylight Time, duffey48@...

writes:

<< LOL Seth always arches too Donna

Yet ANOTHER thing these two cuties have in common Gail!!! ;-)

Donna >>

Is that related to the autism? I never really thought about it other than

it's *just Seth*. LOL

Gail

[Guest guest]

okay. I am new here. what are your acronyms LOL, DH I'm thinking like Lots

of Luck and Designated Hitter. I thought only professional trying to confuse

parents used undefined acronyms. Thanks for any enlightenment,

Mother to Marley age 10 DS-ASD and RGK, Cas age 9 RGK, and Kira RGK!

[Guest guest]

okay. I am new here. what are your acronyms LOL, DH I'm thinking like Lots

of Luck and Designated Hitter. I thought only professional trying to confuse

parents used undefined acronyms. Thanks for any enlightenment,

Mother to Marley age 10 DS-ASD and RGK, Cas age 9 RGK, and Kira RGK!

[Guest guest]

HI !

LOL = Laughing outloud

Dh = Dear Husband (the only acceptible definition here)

BTW = by the way

FWIW = for what it's worth

IMOH = in my humbol opinion

that should get you started......

j

[Guest guest]

HI !

LOL = Laughing outloud

Dh = Dear Husband (the only acceptible definition here)

BTW = by the way

FWIW = for what it's worth

IMOH = in my humbol opinion

that should get you started......

j

[Guest guest]

In a message dated 5/22/01 7:31:07 PM Eastern Daylight Time,

smilinggail@... writes:

> Is that related to the autism? I never really thought about it other than

> it's *just Seth*. LOL

> Gail

>

>

I don't know Gail. She does it even if you are holding her, which is pretty

scary. She's almost flown out of my arms a few times.

Donna

[Guest guest]

Thanks for the acronym listing! I now feel up to speed.

[Guest guest]

hehe, if you chat with others online you wil get to

know them really fast, or play online games too.

shawna

--- MSomemom@... wrote:

> okay. I am new here. what are your acronyms LOL,

> DH I'm thinking like Lots

> of Luck and Designated Hitter. I thought only

> professional trying to confuse

> parents used undefined acronyms. Thanks for any

> enlightenment,

> Mother to Marley age 10 DS-ASD and RGK, Cas age 9

> RGK, and Kira RGK!

>

> --------------------------------------------------

> Checkout our homepage for information,

> bookmarks, and photos of our kids. Share favorite

> bookmarks, ideas, and other information by including

> them. Don't forget, messages are a permanent record

> of the archives for our list.

>

> --------------------------------------------

>

>

[Guest guest]

hehe, if you chat with others online you wil get to

know them really fast, or play online games too.

shawna

--- MSomemom@... wrote:

> okay. I am new here. what are your acronyms LOL,

> DH I'm thinking like Lots

> of Luck and Designated Hitter. I thought only

> professional trying to confuse

> parents used undefined acronyms. Thanks for any

> enlightenment,

> Mother to Marley age 10 DS-ASD and RGK, Cas age 9

> RGK, and Kira RGK!

>

> --------------------------------------------------

> Checkout our homepage for information,

> bookmarks, and photos of our kids. Share favorite

> bookmarks, ideas, and other information by including

> them. Don't forget, messages are a permanent record

> of the archives for our list.

>

> --------------------------------------------

>

>

[Guest guest]

,

Where do you live? I am in Orinda in the SF Bay Area and have been

thinking about taking my son, Brook to see Dr. Lottspeich myself. A friend of

mine used to work with her and says she is excellent.

Marisa,

Mom to Miles 14, Brook 11, and Genevieve 3 yrs

[Guest guest]

In a message dated 01-05-26 20:02:57 EDT, you write:

<< Where do you live? I am in Orinda in the SF Bay Area and have been

thinking about taking my son, Brook to see Dr. Lottspeich myself. A friend

of

mine used to work with her and says she is excellent. >>

I used to live in San . We presently live in Kentucky, although we are

anticipating another move this summer. We really liked Dr. Lottspiech. She

was thorough, respectful to us as parents--but the best was that she really

attempted to interact with Marley. And she was somewhat successful too. The

psychiatrists we see now for Marley are strictly there to prescribe medicine.

They hardly acknowledge Marley at all. How are things in Orinda? Are there

any great services? We could be back in San to live at some time. In

fact we will be there in June.

[Guest guest]

Hi ,

Thanks for the info on Dr. Lottspeich. Services very widely depending on

where you live and what your child needs around here. My son Brook goes to

school in Danville, but there are schools in the area that specialize in

children with autism. Brook is too low functioning for the class in our

school district. Still, his teacher has made a lot of progress with him this

last year, he started talking and putting words together. So overall I'm

pleased with the progress he has made in this school. Did Dr. Lottspeich put

Marley on any medications and what was the evaluation process like? Thanks a

lot.

Marisa,

Mom to Miles 14, Brook 11, and Genevieve 3 yrs

[Guest guest]

Yes she started him very consevatively on prozac. It was not very effective

so we then switched to zoloft which he is still on now. I really appreciated

her conservative-ness. She had us monitor and collect data on a specific

behavior of our choosing while he was under the influence and then when he

was off the medicine. It really helped us to determine the effect or

non-effect of the medication. To me it just was not worth it to possibly

medicate my child for 50 + more years and have it only have a subtle effect.

Zoloft has reaaly helped him with his transitions and some of his more

repetitive/obsessive stim behaviors. I have heard of other children having

success with other meds and combinations. This just seems to be what works

for Marley and our family.

The evaluation process: We went one day and she just sort of talked to us

about the process and she introduced herself to Marley. This probably took

about 1 1/2 hours. The next time we went. They spent several hours with

Marley. Dr. Lottspiech and a Pychologist took turns observing and

administering different assessments. I would say about 3 hours with many

breaks because Marley could not tolerate long sessions. Then we took Marley

for lunch and my mother in law came and picked up Marley. My husband and I

then went in about and hour or so after lunch and heard the verdict. It was

not anything that we did not expect, but it is still hard to hear. Dr.

Lottspiech talked with us about reccomendations. She recommended things that

fit into our family. For example I did not see us taking on a Lovaas

approach in our home. I have 2 other children and IMO it would not be good

for the whole family to have such an aggressive and time consuming program.

It sort of made me feel like the whole family's life would revolve around the

treatment of Marley. Plus it seemed sort of invasive to me and a lot of

Marley's problems seemed to me to be from anxiety. So I was looking for a

way to help organize his environment wherever his environment was. She

recommended TEACCH and other visual strategies. and of course the medication

too. About a week or two after the evaluation day we received a report. The

thing that I liked most about her was that she did not put into writing

anything that we all had not already agreed on, and she really took Marley as

an individual he was not just herded through a process. I know that there

were other families and children because it was hard to get an

appointment--but while Marley was there I felt like he was her only patient.

Sorry so long winded. If you want to know precise tests I can tell you

those, but they might choose different assessment tools for your child

because of age or because there might be something better now. Keep me

posted! .

[Guest guest]

Can you tell me if your physician performed a full physical exam before

prescribing TRT for you? One question, specifically, is did the physican

perform a digital rectal exam in addition to PSA screening? I have no burning

desire for a DRE, but wondered if most physicians do them in cases of low T.

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