Re: newly diagnosed...scared...anxious

[Guest guest]

Welcome to the group Crystal. I have (3) children 14,11, & almost 8 months all with Bleph. We live in NY, where are you from ? People in this group have truly been a blessing. If there is anything you need to know, ask away they truly have all the answers ! even more so than most doctors I find. Good Luck Sharon futureblkphd <futureblkphd@...> wrote: Hello...Our pediatric optham. just diagnosed our 15 month old Miles with bleph. She wrote it down so casually on a slip of paper that I didn't think too much of it other than that the "syndrome" part sounded very scary. I did some research and long story short we are now going to geneticist and a children's special care center. What we first thought was just paw paw and daddy's droopy lids has now turned into this big scary word. I am glad that this

group exists. I will post some pictures and look forward to your words of encouragement. This has been a difficult week. crystal <a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>

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[Guest guest]

Welcome to the group Crystal. I have (3) children 14,11, & almost 8 months all with Bleph. We live in NY, where are you from ? People in this group have truly been a blessing. If there is anything you need to know, ask away they truly have all the answers ! even more so than most doctors I find. Good Luck Sharon futureblkphd <futureblkphd@...> wrote: Hello...Our pediatric optham. just diagnosed our 15 month old Miles with bleph. She wrote it down so casually on a slip of paper that I didn't think too much of it other than that the "syndrome" part sounded very scary. I did some research and long story short we are now going to geneticist and a children's special care center. What we first thought was just paw paw and daddy's droopy lids has now turned into this big scary word. I am glad that this

group exists. I will post some pictures and look forward to your words of encouragement. This has been a difficult week. crystal <a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>

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[Guest guest]

Dear Crystal

Welcome to the group. My daughter, Kirsten is 3 years old and has

BPES. She is the only one in our family to have it and I remember

vividly how scared I was when the diagnosis was made. Miles is going

to be okay.

Does Miles' father have the same eyes and is he your first child? I

look forward to seeing your photos and hearing more about him.

Regards

Parsons (UK)

>

> Hello...Our pediatric optham. just diagnosed our 15 month old

Miles

> with bleph. She wrote it down so casually on a slip of paper that

I

> didn't think too much of it other than that the " syndrome " part

> sounded very scary. I did some research and long story short we

are

> now going to geneticist and a children's special care center. What

we

> first thought was just paw paw and daddy's droopy lids has now

turned

> into this big scary word. I am glad that this group exists. I will

> post some pictures and look forward to your words of

encouragement.

> This has been a difficult week.

>

> crystal

>

[Guest guest]

Hi Crystal:

Our pediatric optham did the same thing as yours, only I had to ask

the nurse to write it down for me. After looking at the information

on the internet, I was also scared and anxious too. This group is a

great source of information. I have learned most of what I know from

here. My is almost 11 mths and just had her lids lifted

earlier this month. Good luck with your future appointment!

>

> Hello...Our pediatric optham. just diagnosed our 15 month old Miles

> with bleph. She wrote it down so casually on a slip of paper that I

> didn't think too much of it other than that the " syndrome " part

> sounded very scary. I did some research and long story short we are

> now going to geneticist and a children's special care center. What

we

> first thought was just paw paw and daddy's droopy lids has now

turned

> into this big scary word. I am glad that this group exists. I will

> post some pictures and look forward to your words of encouragement.

> This has been a difficult week.

>

> crystal

>

[Guest guest]

Crystal, We were diagnosed when my child was 2 weeks old and

sequestered in the opthmaologists office. After an MRI and some

scary weeks and many, many visits to several specialists including a

geneticist we found out we have a very healthy normal kid that is

just going to need a lot of surgeries. She is 8 months old and I

know what you are going through. If you would like to talk let me

know...

Tawnya

Hello...Our pediatric

optham. just diagnosed our 15 month old Miles

> with bleph. She wrote it down so casually on a slip of paper that

I

> didn't think too much of it other than that the " syndrome " part

> sounded very scary. I did some research and long story short we

are

> now going to geneticist and a children's special care center. What

we

> first thought was just paw paw and daddy's droopy lids has now

turned

> into this big scary word. I am glad that this group exists. I will

> post some pictures and look forward to your words of

encouragement.

> This has been a difficult week.

>

> crystal

>

>

>

>

>

>