Update, surgery, patching, behavior, etc.

[Guest guest]

hello all...I am a sporadic poster, but check in often. Miles is now 3

and his doctor wants to schedule the sling surgery sooner rather than

later. He has a milder form of BP and therefore she suggests that we

not do the nasal wiring. I feel guilty because I did not always patch

as aggressively as instructed as Miles screamed from the thought of

that " hurt sticker " on his eyes. I have found Anissa's fun patches and

have asked the doc to check Miles' prescription in a last ditch effort

to delay the surgery until he is four.

What can I expect from this process? Is it better to have the surgery

sooner than later?

One last thing, Miles, though extremely bright is somewhat hyper active

and speaks in a " foreign " language when frustrated. We have an referral

to see a behaviorist but I am wondering if anyone has experienced

behavior issues in conjunction with the BP. Thanks as usual, I thank

God for this group!

Crystal Sherrod-Kimble

[Guest guest]

Hi there

Trans nasal wiring was done on my daughter when she was 6 (now 13),It was done in another hospital by a not too experienced doctor. It was not effective and was removed on Friday the 15th of Feb. 2008. Most surgeons I spoke to in Moorfields eye hospital London were not in favour of it. The impression I got was it is used if deemed necessary and this always depends on the individual case.

Timing of the surgery also depends on whether the vision and posture is affected, I am told by our docs that if there is no negative effect on a person then surgery is better delayed, something to do with better results with more fully formed features.

With regard to behaviour, I think kids with BPES are just like any other kid. Some are gentle some are more boisterous.

Hope this helps

Joyce

London England

[Guest guest]

Hi Crystal,

Usually, if the ptosis isn't affecting vision or neck-craning, " they "

try to leave the ptosis repair until after the telecanthus repair but

before starting school (but the later the better for both).

Trans-nasal wiring is not always done; the voices in my head (don't

listen to THEM), and the learned journal articles I have, tell me that

wiring is usually done when the Y-V (or whatever) canthoplasty alone is

insufficient. It probably also depends on the surgeon somewhat - some

wire, some don't.

BPES enhancement isn't associated with behaviour issues. Don't listen to

my wife; I can assure you my behaviour is nothing to worry about.

Rob W

Oz

futureblkphd wrote:

>

>

> hello all...I am a sporadic poster, but check in often. Miles is now 3

> and his doctor wants to schedule the sling surgery sooner rather than

> later. He has a milder form of BP and therefore she suggests that we

> not do the nasal wiring. I feel guilty because I did not always patch

> as aggressively as instructed as Miles screamed from the thought of

> that " hurt sticker " on his eyes. I have found Anissa's fun patches and

> have asked the doc to check Miles' prescription in a last ditch effort

> to delay the surgery until he is four.

>

> What can I expect from this process? Is it better to have the surgery

> sooner than later?

>

> One last thing, Miles, though extremely bright is somewhat hyper active

> and speaks in a " foreign " language when frustrated. We have an referral

> to see a behaviorist but I am wondering if anyone has experienced

> behavior issues in conjunction with the BP. Thanks as usual, I thank

> God for this group!

>

> Crystal Sherrod-Kimble

[Guest guest]

Hello, when my daughter (with BPES) was younger, she had her own "language", had speech therapy due and went on to participate in Forensics in middle school. I was wondering just the other day if the speech pattern had anything to do with her BPES. I am not sure if she and your son are the only two...it would be nice to know something more from this group, perhaps. futureblkphd <futureblkphd@...> wrote: hello all...I am a sporadic poster, but check in often. Miles is now 3 and his doctor wants to schedule the sling

surgery sooner rather than later. He has a milder form of BP and therefore she suggests that we not do the nasal wiring. I feel guilty because I did not always patch as aggressively as instructed as Miles screamed from the thought of that "hurt sticker" on his eyes. I have found Anissa's fun patches and have asked the doc to check Miles' prescription in a last ditch effort to delay the surgery until he is four. What can I expect from this process? Is it better to have the surgery sooner than later? One last thing, Miles, though extremely bright is somewhat hyper active and speaks in a "foreign" language when frustrated. We have an referral to see a behaviorist but I am wondering if anyone has experienced behavior issues in conjunction with the BP. Thanks as usual, I thank God for this group! Crystal Sherrod-Kimble

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Dear Crystal,

Nore our son (34) nore his daughter (4) had ever behaviour isues.

Salut,

Dolph

blepharophimosis Update, surgery, patching, behavior, etc.

hello all...I am a sporadic poster, but check in often. Miles is now 3 and his doctor wants to schedule the sling surgery sooner rather than later. He has a milder form of BP and therefore she suggests that we not do the nasal wiring. I feel guilty because I did not always patch as aggressively as instructed as Miles screamed from the thought of that "hurt sticker" on his eyes. I have found Anissa's fun patches and have asked the doc to check Miles' prescription in a last ditch effort to delay the surgery until he is four. What can I expect from this process? Is it better to have the surgery sooner than later? One last thing, Miles, though extremely bright is somewhat hyper active and speaks in a "foreign" language when frustrated. We have an referral to see a behaviorist but I am wondering if anyone has experienced behavior issues in conjunction with the BP. Thanks as usual, I thank God for this group! Crystal Sherrod-Kimble

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