Re: thanks for sharing your wisdom

[Guest guest]

bnbbrethouwer wrote:

>I have a 4 year old son, Mason, with bleph. We are getting ready to

>undergo round 2 of surgery. I generally log on to read everyone

>else's messages and usually have very little to contribute but i

>wanted to thank the " new member " and Rob for all of their insight. i

>know very little except for what our doctors tell us.

>

I don't know why it is, but so many doctors seem generally reluctant to

give away much information, and especially so with ophthalmologists for

some reason. Over the years I've developed a healthy contempt for their

attitude, and always go armed with a long list of questions that I make

the doc answer fully - after all, I'm paying them (a lot!) to do so. I

also only ever call them by their first name, never 'doctor blah', to

help break down the communication barriers they so elaborately set up

(and help them to remember their place as hired help). This is not to be

disrespectful, but to help maintain some equilibrium in the

relationship. I find they generally respect one's interest in their

field, and are happy to talk once they get warmed up.

>Mason will be starting preschool in the next couple of weeks and i

>worry about how to handle things when the 'social issues' start. how

>do i make being a kid that looks a little different easier?

>

A very hard call. My mother used to tell me " Just ignore them " , which of

course at that age is pretty well impossible. That gets easier as one

develops a thicker skin (and bigger fists) but it still hurts. To some

extent I think kids just have to learn to cope on their own - we can't

always be there to defnd them. These days, I expect it might be less of

an issue than say 30 years ago, when there was almost no ethnic

diversity in our society/schools, and many types of 'different' kids

were separated. School kids seem more tolerant and accepting of

differences these days. Besides, after surgical correction, bleph can be

hard to spot, even to the keen scrutiny of one's schoolmates. Fear not.

>another thing that is very interesting that i have learned since i

>started reading the messages from this group is that there are other

>side effects to this disorder. no doctor has ever mentioned any of

>that to me. i did a google search awhile ago and that is where i

>found this group. what other articles or books could i read that

>would give me further information (above and beyond what the doctors

>say.)

>

I've found a wealth of information by doing a search or two on

Medline/Medscape (http://www.medscape.com). That pointed me to journal

articles that I then obtained via my local library for a nominal fee or

for free from the childrens hospital library. For example, check out

" Syndrome of the month: Blepharophimosis, ptosis, epicanthus inversus

syndrome (BPES syndrome) " in the Journal of Medical Genetics 1988, vol

25, pages 47-51 which, as a bonus, includes before & after pics of one

of the other folks in this forum. (I had other good articles on other

side-effects of BPEI but have carefully lost them, d'oh!) One can also

use Medline to check doctors' credentials (i.e. see if they've published

any of their alleged BPEI-correction knowledge).

Rob

[Guest guest]

Hi becki...please let me know how masons surgery goes! we have a 7 month old son with blephs...do you have some pix we could see of your wee guy! would be interested to know what he looks like before and after surgery! how old was he at his 1st surgery???....Does blephs run in your family? or is the 1st to have this...ethan is, we don't know where it came from??? do you have any other children? we have a 4 year old, who doesn't have it...talk soon:)...leanne

blepharophimosis thanks for sharing your wisdom

I have a 4 year old son, Mason, with bleph. We are getting ready to undergo round 2 of surgery. I generally log on to read everyone else's messages and usually have very little to contribute but i wanted to thank the "new member" and Rob for all of their insight. i know very little except for what our doctors tell us. Mason will be starting preschool in the next couple of weeks and i worry about how to handle things when the 'social issues' start. how do i make being a kid that looks a little different easier?another thing that is very interesting that i have learned since i started reading the messages from this group is that there are other side effects to this disorder. no doctor has ever mentioned any of that to me. i did a google search awhile ago and that is where i found this group. what other articles or books could i read that would give me further information (above and beyond what the doctors say.)thanks for any help!becki

[Guest guest]

hi leanne~

mason had his first surgery when he was about 2 1/2 months old. he had such severe ptosis that it wasn't until after his surgery that we actually saw his eyes. he was a pretty unhappy little guy and almost immediately after the surgery he was smiling, he could finally see us.

nobody in our family has this. my father-in-law has some eye troubles (a lazy eye, i think.) i was incredibly obsessed with how and why this happened. we have a 2 year old, and thank goodness, his eyes are good. mason has no other troubles. he is incredibly bright and he has nearly perfect vision. he doesn't need glasses or anything.

i will try to get some before and after photos together.

where is ethan being treated? do you like his doctors? it is hard to really find anyone that knows much about this. good luck!

beckitltne <tltne@...> wrote:

Hi becki...please let me know how masons surgery goes! we have a 7 month old son with blephs...do you have some pix we could see of your wee guy! would be interested to know what he looks like before and after surgery! how old was he at his 1st surgery???....Does blephs run in your family? or is the 1st to have this...ethan is, we don't know where it came from??? do you have any other children? we have a 4 year old, who doesn't have it...talk soon:)...leanne

blepharophimosis thanks for sharing your wisdom

I have a 4 year old son, Mason, with bleph. We are getting ready to undergo round 2 of surgery. I generally log on to read everyone else's messages and usually have very little to contribute but i wanted to thank the "new member" and Rob for all of their insight. i know very little except for what our doctors tell us. Mason will be starting preschool in the next couple of weeks and i worry about how to handle things when the 'social issues' start. how do i make being a kid that looks a little different easier?another thing that is very interesting that i have learned since i started reading the messages from this group is that there are other side effects to this disorder. no doctor has ever mentioned any of that to me. i did a google search awhile ago and that is where i found this group. what other articles or books could i read that would give me further

information (above and beyond what the doctors say.)thanks for any help!becki