Re: Re: Finally - Aan acurate diagnosis!

[Guest guest]

Way to go, Rae Ann!! What a lesson to stick with that parent's intuition. Best of luck to you! And feel free to stay connected with us as well while you get your own network up and running!

--Dawn

From: Rae Ann <randigyrlpi@...>

Reply-blepharophimosis

Date: Tue, 27 Sep 2005 09:53:59 -0700 (PDT)

blepharophimosis

Subject: blepharophimosis Re: Finally - Aan acurate diagnosis!

Hi Bleph family!

I just wanted to let you all know that since my son's birth (just over a year ago), I have fought tooth and nail to get the Drs. here in Cincinnati, Ohio to listen to my concerns about my son's condition. I was ready to leave the state just to find adequate care. Then I found Dr. Miles Burke!

He looked at my son and within just a few minutes and several different visual tests, we got what we have been trying to obtain for a year now. A clear, confident diagnosis!

CONGENITAL THIRD NERVE PALSY (w/Congenital Ptosis)

Although it is not Bleph, it does look similar to someone that is not trained in this field (like me!). At this point, I have not had sufficient time to fully research the condition but for those parents or individuals who are searching for an accurate diagnosis, don't rule this condition out. Dr. Burke stated, in his experience that this condition is even more rare than Bleph.

He has the head tilt that will need to be addressed. He will need corrective lenses because he has nearsightedness in the unaffected eye, and also has 'binocular' vision. The good news is I have a direction to head in. I can now be a more effective parent and advocate for my child's care.

Never accept the first opinion, especially if it doesn't feel right!

Also, I can't find any support groups for children/adults with Third Nerve Palsy and because this group has been nothing less than amazing in my opinion, I have been inspired to start my own!

If anyone has information on Third Nerve Palsy, I'd love to talk!

Good Luck all!

Rae Ann ('s Mom)

for Good

Click here to donate <http://store./redcross-donate3/> to the Hurricane Katrina relief effort.

[Guest guest]

Hi friend, Where is Dr. Burke at? The name sounds familiar.

kk

[Guest guest]

Wow, Rae Ann! Good for you! I am a true believer in

parental instinct - search until you find answers.

Wishing you all the best!

April

--- Rae Ann <randigyrlpi@...> wrote:

> Hi Bleph family!

>

> I just wanted to let you all know that since my

> son's birth (just over a year ago), I have fought

> tooth and nail to get the Drs. here in Cincinnati,

> Ohio to listen to my concerns about my son's

> condition. I was ready to leave the state just to

> find adequate care. Then I found Dr. Miles Burke!

>

> He looked at my son and within just a few minutes

> and several different visual tests, we got what we

> have been trying to obtain for a year now. A clear,

> confident diagnosis!

>

> CONGENITAL THIRD NERVE PALSY (w/Congenital Ptosis)

>

> Although it is not Bleph, it does look similar to

> someone that is not trained in this field (like

> me!). At this point, I have not had sufficient time

> to fully research the condition but for those

> parents or individuals who are searching for an

> accurate diagnosis, don't rule this condition out.

> Dr. Burke stated, in his experience that this

> condition is even more rare than Bleph.

>

> He has the head tilt that will need to be addressed.

> He will need corrective lenses because he has

> nearsightedness in the unaffected eye, and also has

> 'binocular' vision. The good news is I have a

> direction to head in. I can now be a more effective

> parent and advocate for my child's care.

>

> Never accept the first opinion, especially if it

> doesn't feel right!

>

> Also, I can't find any support groups for

> children/adults with Third Nerve Palsy and because

> this group has been nothing less than amazing in my

> opinion, I have been inspired to start my own!

>

> If anyone has information on Third Nerve Palsy, I'd

> love to talk!

>

> Good Luck all!

>

> Rae Ann ('s Mom)

>

>

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

> for Good

> Click here to donate to the Hurricane Katrina

> relief effort.

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