Re: Bonnie- Confusion - follow-up-Eyes

[Guest guest]

Bonnie-I'm going to get ready for some football-but I can't get Patty

out of my mind. We were so set up for what we had to do-it didn't

break down till we came into public school, and then we recovered

after time..but Patty..to not even have the diagnosis till 14. Thats

crazy. Really, really bothers me..well, I hope we all can contribute

to finding really good solutions for her-and for what she'd like to

do and have. We'll talk lots more-I would love for you to be at

that meeting at Perkins-I think its going to be fine for U to attend-

I mean its not a private club. So, I'll make a phone call on Monday-

and if U can keep that day free-we'll go. Otherwise, I'll take

everything down, if U can't go. Especially for U to head the adult

chargers group-they may/should have some helpful info. On my mind,

in my heart.

In CHARGE , Turk22082@a... wrote:

>

> Oh , , ! Yup we're going down that same path. Its

strange.

>

> You are also so right in that if you get one persons who " thinks "

they know

> it can cabash your child's education. Our problem and biggest

roadblock was

> our Special Ed Director. Actually her and a few others including

our school

> Psych. Man we fought her tons. We actually threw out her testing

and results

> because of her total incompetence. She hated that and me. Then

finally I

> became an advocate and was working with a parent and child in our

town. By

> accident the Psych left a letter in the child's communication book

talking bad things

> of the child and how they wouldn't provide services no matter the

results and

> that she couldn't stand the child or parent. The parent was so

hurt when she

> found it. She had written this to the Sped Director who signed and

dated it.

> What!?! Yes, we copied it and turned it in to the Superintendent

and to the

> School Board. Apparently the Psych then had a breakdown. She

quit. She

> said the reasons were parents had become too abusive. Imagine

that.

>

> It was a blessing. She should have been locked up.

>

> Sorry about graduation but we kind of went through the same thing.

Patty

> insisted on shaking the principals hand who tried to avoid her.

Patty just stood

> there and waited till he finally shook her hand. She made me proud.

She

> walked across the stage but had no help. She too doesn't have

depth perception and

> was anxious of the stairs. But a wonderful teacher went out of her

way to go

> get her. We were blessed in many ways.

>

> Sorry to hear about Perkins. Can't explain that one. I so hope

they get it

> now.

>

> Way too funny about your coaching . I too finally did the

same. She

> just won't do it though. Patty is way to anxious about not

performing her best

> on any evaluation. The results are inaccurate because she works

way to hard.

> That doesn't happen in real life. Even with that she is still

BLIND. Guess

> I have to do more coaching!

>

> Now about SSI................................................ I'm

with ya!

>

>

>

> Bonnie, mom to a 23, Patty CHARGE 21, and wife to

>

>

>

[Guest guest]

,

I forgot to say I think you have a great doctor helping you. The blind

diagnosis will be a huge benefit for her.

Patty is lucky that she has the ability to see out of her right eye even

though it is limited. I know we have been lucky in many ways.

Part of the reason some wouldn't accept Patty's limited vision is that she

appears to see just fine. Appearances can be deceiving. She can even pick up

lint, etc., and has been able to do things like that since she was young. She

didn't used to follow things with her eyes as a child but I have my own ideas

about that one too. I think she kept her eyes still for many, many reasons

including lack of muscle development but also due to vestibular reasons, health,

and then more....... And she too walked into walls and bumped her head on

things all the time. But this too was not just for one reason. UGH

With her vision I have learned there is more to it than physical structure

and acuity. We must look at their field of vision. How the brain interprets

vision is yet another ball of wax our kids have going.

Just my two cents. I am sure others could explain this so much better than I

seem to be doing. My point is that although a " Blind " diagnosis is

terrifying not having it when that is the fact is more than terrifying.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Bonnie,

What did the neuro-ophthalmologist do that helped understand Patty's vision

better? (I think it was Patty that I am thinking of.)

Kim

> ,

>

> I forgot to say I think you have a great doctor helping you. The blind

> diagnosis will be a huge benefit for her.

>

> Patty is lucky that she has the ability to see out of her right eye even

> though it is limited. I know we have been lucky in many ways.

>

> Part of the reason some wouldn't accept Patty's limited vision is that she

> appears to see just fine. Appearances can be deceiving. She can even pick up

> lint, etc., and has been able to do things like that since she was young. She

> didn't used to follow things with her eyes as a child but I have my own ideas

> about that one too. I think she kept her eyes still for many, many reasons

> including lack of muscle development but also due to vestibular reasons,

> health,

> and then more....... And she too walked into walls and bumped her head on

> things all the time. But this too was not just for one reason. UGH

>

> With her vision I have learned there is more to it than physical structure

> and acuity. We must look at their field of vision. How the brain interprets

> vision is yet another ball of wax our kids have going.

>

> Just my two cents. I am sure others could explain this so much better than I

> seem to be doing. My point is that although a " Blind " diagnosis is

> terrifying not having it when that is the fact is more than terrifying.

>

>

>

>

> Bonnie, mom to a 23, Patty CHARGE 21, and wife to

>

>

>

[Guest guest]

Kim,

I held high hopes for the neuro opthomologist but they too ended up not

knowing much. Or at least they said nothing.

So what else is new?

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

That was my hope too and it was really just more of the same, which is why I

asked you thinking maybe there was something more.... Kim

> Kim,

>

> I held high hopes for the neuro opthomologist but they too ended up not

> knowing much. Or at least they said nothing.

>

> So what else is new?

>

>

> Bonnie, mom to a 23, Patty CHARGE 21, and wife to

>

>

>

[Guest guest]

I'm behind on posts so may be off here. However, many years ago we

had grand luck with a neuro-opthomologist. He could discern maacular

functioning in 's better eye while the other drs could not. To this day,

one of K's St. L. opthomologists puts it this way: " I see what Mitch [the

neuro guy] says is the macula. " This finding actually helped us a lot --- to

have faith in what we saw K. demonstrating functionally but also to believe

in our own sanity! Martha

[Guest guest]

To clarify - when I commented to Bonnie on what to have the doc look for if

there were already doing an MRI, I did not suggest looking for Chiari due to

symptoms, but due to what has happened with Di, and what has happened with

(not diagnosed with Chiari) simply to get a baseline while they were

at. As far as I know Patty has not had symptoms of Chiari.

Kim

> Bonnie-recvd two posts tonite on the chiari list serv looking for answers

> re; an occipital nerve pressure test. Heard of that? Its something the

> neuro-op does. I'll watch for more info and keep U posted if it means

> something to

> U. Obviously, I am missing a big piece of Patty's recent history. I know

> U're switching dr's. I know I caught Ur attention with the chiari thing-but

> if

> something new is going on U would like to share-I'd certainly pay

> attention.-look, listen,read, report. Whatever I could do, U know. (I've

> been doing a

> lot of reading)

>

>

>

[Guest guest]

Was he just so skilled that he could see it or did he use different

equipment or what? Kim

> I'm behind on posts so may be off here. However, many years ago we

> had grand luck with a neuro-opthomologist. He could discern maacular

> functioning in 's better eye while the other drs could not. To this day,

> one of K's St. L. opthomologists puts it this way: " I see what Mitch [the

> neuro guy] says is the macula. " This finding actually helped us a lot --- to

> have faith in what we saw K. demonstrating functionally but also to believe

> in our own sanity! Martha

>

>

>

>

[Guest guest]

Kim,

I'm going to show my ignorance here. When saw Mitch in St. Louis

(she must have been a toddler or younger), he hooked her up to

electrodes (in laymen's language) and had her gaze at a screen. It was

like an ABR (as it was called then) for the eyes. It was an OBJECTIVE

study and amazingly accurate for 's vision. If you'd like, I can hunt up

the old records and give you the exact names of the test(s); perhaps Meg

or another professional can jump in to speed things along.

In any case, I want to strtess that the tests have been quite thoroughly

borne out in functioning that other drs said would be impossible. Martha

[Guest guest]

It seems that perhaps Dylan's docs don't do this, because of his

functioning.

We did go for a visual field test when he was young, but there was no way to

do it with him (program was actually for kids)

Kim

> Kim,

> I'm going to show my ignorance here. When saw Mitch in St. Louis

> (she must have been a toddler or younger), he hooked her up to

> electrodes (in laymen's language) and had her gaze at a screen. It was

> like an ABR (as it was called then) for the eyes. It was an OBJECTIVE

> study and amazingly accurate for 's vision. If you'd like, I can hunt up

> the old records and give you the exact names of the test(s); perhaps Meg

> or another professional can jump in to speed things along.

> In any case, I want to strtess that the tests have been quite thoroughly

> borne out in functioning that other drs said would be impossible. Martha

>

>

>

>

>

>

>

[Guest guest]

i think ive had this done im not sure had so many done over the years martha

i think its eahter the what ever you call ti the lenses and they ptu them up

to the yeyes to see behind them i knwo ive had that done heaps of times

>

> It seems that perhaps Dylan's docs don't do this, because of his

> functioning.

> We did go for a visual field test when he was young, but there was no way

> to

> do it with him (program was actually for kids)

>

> Kim

>

>

>

>

> > Kim,

> > I'm going to show my ignorance here. When saw Mitch in St.

> Louis

> > (she must have been a toddler or younger), he hooked her up to

> > electrodes (in laymen's language) and had her gaze at a screen. It was

> > like an ABR (as it was called then) for the eyes. It was an OBJECTIVE

> > study and amazingly accurate for 's vision. If you'd like, I can

> hunt up

> > the old records and give you the exact names of the test(s); perhaps Meg

> > or another professional can jump in to speed things along.

> > In any case, I want to strtess that the tests have been quite

> thoroughly

> > borne out in functioning that other drs said would be

> impossible. Martha

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Martha-

They still do those vision tests in St Louis. I think one is called VEP --

Visual Evoked Potential. I think they were developed there and may not be

done around the country.

Michele W

Aubrie's mom

[Guest guest]

Kim-

The VEP can be done on an infant/toddler. But the child does have to

tolerate the electrodes on their scalp, sit and attend to the screen.

Michele W

[Guest guest]

If Dylan can learn to do the auditory booth, he could learn to do this as

well.

> Kim-

> The VEP can be done on an infant/toddler. But the child does have to

> tolerate the electrodes on their scalp, sit and attend to the screen.

>

> Michele W

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

This test is done here as well, but we have to wait until Dylan can

" cooperate more " . Kim

> Martha-

> They still do those vision tests in St Louis. I think one is called VEP --

> Visual Evoked Potential. I think they were developed there and may not be

> done around the country.

>

> Michele W

> Aubrie's mom

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>