Jump to content
RemedySpot.com

Hello =)

Rate this topic


Guest guest

Recommended Posts

Guest guest

My name's . I'm so glad I found this site. I have so many

questions. My 5 month old son had surgery for ptosis 2 months ago and

during the surgery they diagnosed him with blepharophimosis. Neither my

husband or I have this and can't figure out how this appeared. My

husband is currently deployed to Iraq, when he returns we hope to see a

genetecist (sp?). Will they be able to figure out if this was passed by

one of us?? Looking forward to finding some answers. I'm in the process

of unpacking from a move so might be awhile before I am back on.

Link to comment
Share on other sites

Guest guest

Hi Welcome to the group! My name is Lucy and we have a 2 year old daughter who is the first in the family, like your son, with BPES. My husband and I had never heard of it when diagnosed, from a book!, but this support group has been fantastic and we now know everything about it. Our daughter is now under Moorfields Eye Hospital in London and had her first operation last September. Where do you live? Any questions please ask. Regards Lucy (Hampshire, UK) <utkaters2000@...> wrote: My name's . I'm so glad I found this site. I have so many questions. My 5 month old son had surgery for ptosis 2 months ago and during the surgery they diagnosed him with blepharophimosis. Neither my husband or I have this and can't figure out how this appeared. My husband is currently deployed to Iraq, when he returns we hope to see a genetecist (sp?). Will they be able to figure out if this was passed by one of us?? Looking forward to finding some answers. I'm in the process of unpacking from a move so might be awhile before I am back on.

is the world's favourite email. Don't settle for less, sign up for your free

account today.

Link to comment
Share on other sites

Guest guest

Hi Lucy,

We live in Texas, at Fort Hood, which is North of Austin. My husband

has lived the past year in Iraq though =(. I grew up in the UK. I

miss it so much! Did your daughter have the ptosis surgery? That is

what has had so far. I'm very nervous about future surgeries

since our insurance will be changing once my husband gets out of the

Army. Luckily, the surgery was covered 100%!!

I was browsing through some posts and noticed a few topics regarding

reflux. Is this associated with blepharophimosis? has had

severe reflux since he was about 2 weeks old. He was dropping weight

very quickly and even the medicine he's on now, Prevacid doesn't seem

to do much good. I try to keep him as still as possible after meals,

but being a boy and from my genes he is VERY hyperactive and likes to

kick around, which makes for a lovely fountain spewing effect (sorry

for the graphic description).

The pediatrician who examined him after his birth told us he would

have problems with his eyes and so I had immediately taken him to a

Pediatric Opthalmologist in Dallas who said surgery needed to be done

the following week. I wanted a second opinion so went to the

Children's Hospital in Houston. The Dr. we saw there also agreed that

surgery needed to happen soon, but preferred to wait until he was a

little older because of the anesthesia. He had the surgery when he

was just 3 months old. I was NOT prepared to see him after the

surgery. It only took about an hour and when I saw him my heart broke

a million times over. He looked like he was in so much pain and all

the tubes coming from him. I hate that children have to go through

this!!

Thank you for the welcome. Will talk again soon,

> My name's . I'm so glad I found this site. I have so

many

> questions. My 5 month old son had surgery for ptosis 2 months ago

and

> during the surgery they diagnosed him with blepharophimosis.

Neither my

> husband or I have this and can't figure out how this appeared. My

> husband is currently deployed to Iraq, when he returns we hope to

see a

> genetecist (sp?). Will they be able to figure out if this was

passed by

> one of us?? Looking forward to finding some answers. I'm in the

process

> of unpacking from a move so might be awhile before I am back on.

>

>

>

>

>

>

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

> is the world's favourite email. Don't settle for less,

sign up for your freeaccount today.

>

Link to comment
Share on other sites

Guest guest

Hi Thanks for the quick reply. Yeah Holly had a temporary eye-lift last September just so her lids were above her pupils. She will still need a couple of ops in the future but at least she is not tilting her head back to see anymore, which is fantastic! Funnily enough Holly did have reflux & colic (ouch!) which I remember well. All seemed to disappear when she was about four to five months old when she was weaned and also I reaslised that breastfeeding wasn't helping because the milk is thinner so apparantely can be sicked up easier. I just remember holding her up right for ages after her feeds to she wouldn't sick them up!! Not convinced that reflux is connected to BPES because I had a few other friends who had the same problems and their children did not have BPES. One thing I have learnt from this support group is that all

children with BPES have it all different. Some have it mild where they need no operations and some have it quite severe and need a bit of help early on. I must admit that technology/experience etc does appear better now and the operations are so amazing making such a difference. Take care and remember it does get easier Love Lucy xxx <utkaters2000@...> wrote: Hi Lucy, We live in Texas, at Fort Hood, which is North of Austin. My

husband has lived the past year in Iraq though =(. I grew up in the UK. I miss it so much! Did your daughter have the ptosis surgery? That is what has had so far. I'm very nervous about future surgeries since our insurance will be changing once my husband gets out of the Army. Luckily, the surgery was covered 100%!!I was browsing through some posts and noticed a few topics regarding reflux. Is this associated with blepharophimosis? has had severe reflux since he was about 2 weeks old. He was dropping weight very quickly and even the medicine he's on now, Prevacid doesn't seem to do much good. I try to keep him as still as possible after meals, but being a boy and from my genes he is VERY hyperactive and likes to kick around, which makes for a lovely fountain spewing effect (sorry for the graphic description). The pediatrician who examined him after his birth told us he would have problems

with his eyes and so I had immediately taken him to a Pediatric Opthalmologist in Dallas who said surgery needed to be done the following week. I wanted a second opinion so went to the Children's Hospital in Houston. The Dr. we saw there also agreed that surgery needed to happen soon, but preferred to wait until he was a little older because of the anesthesia. He had the surgery when he was just 3 months old. I was NOT prepared to see him after the surgery. It only took about an hour and when I saw him my heart broke a million times over. He looked like he was in so much pain and all the tubes coming from him. I hate that children have to go through this!!Thank you for the welcome. Will talk again soon,> My name's . I'm so glad I found this site. I have so many > questions. My 5 month old son had surgery for ptosis 2 months ago and > during the surgery they diagnosed him with blepharophimosis. Neither my > husband or I have this and can't figure out how this appeared. My > husband is currently deployed to Iraq, when he returns we hope to see a >

genetecist (sp?). Will they be able to figure out if this was passed by > one of us?? Looking forward to finding some answers. I'm in the process > of unpacking from a move so might be awhile before I am back on. > > > > > > > ---------------------------------> is the world's favourite email. Don't settle for less, sign up for your freeaccount today.>

is the world's favourite email. Don't settle for less, sign up for your free

account today.

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...