RE: New with a million questions

[Guest guest]

Hi there, just wondering where you are from?? it makes it easier for people to give advice on doctors if there are any in the area that any of us have used... my son is Lynden (has pictures on the site, so take a look) he is 7 years old and has had his first surgery at 5 weeks old, it was necessary for him to have the surgery that early for it was really affecting his vision... we always got the "he is asleep" thing too plus the blind thing, it just got annoying... but like your child he was not BLIND either.... it varies when a doctor does the surgery on the different degrees of drooping and the doctors base it on how much of the pupil is covered. As for surgeries it all depends on the doctor because every doctor does different things... again it would be easier to know where you live to see if any of us live there too... talk to you soon

Tonikka and chris

-----Original Message-----From: agarrett4337 [mailto:agarrett00@...]Sent: March 26, 2005 11:30 AMblepharophimosis Subject: blepharophimosis New with a million questionsI am a foster mother and had a 3 month old baby placed with me 3 days ago. His mother is mentally retarded and did little in the way of exploring his eye problems, but he looks just like many of the kids photos in the files. THe case worker told me he may be blind.His eyelids will only open about 2 mm, and he looks like he is always asleep. He is definetely NOT blind. He squints his eyes tight in bright sunlight and when I cradle him he tips his head back to look out of his little slits. His eyes openings are very short horizontally.I have to take him to a pediatrician next week. What type of referral should I ask for? Genetisist, pediatric eye doctor, or what?My feeling is he should have this corrected immediately so other aspects of his development aren't delayed by his vision impairment. How early is the first surgery usually done? I saw one file photo where the girls eyelids were taped. Is this routinely done? Don't the eyes dry out if you do this?He is a sweet baby boy and I want to get him the best care possible in whatever time he is with me.

[Guest guest]

Hello,

> I am a foster mother and had a 3 month old baby placed with me 3 days

> ago. His mother is mentally retarded and did little in the way of

> exploring his eye problems, but he looks just like many of the kids

> photos in the files. THe case worker told me he may be blind.

You've done pretty well to find out the name of the syndrome and find

this group in just three days! Especially with a 3-month-old bub to

wrangle. I'm impressed.

> His eyelids will only open about 2 mm, and he looks like he is always

> asleep. He is definetely NOT blind. He squints his eyes tight in

> bright sunlight and when I cradle him he tips his head back to look

> out of his little slits. His eyes openings are very short

> horizontally.

The inability to open the eyelids is called ptosis. The horizontal

narrowness of the openings is called blepharophimosis. These terms will

come in handy when dealing with medical staff.

> I have to take him to a pediatrician next week. What type of

> referral should I ask for? Genetisist, pediatric eye doctor, or what?

Many people look for an oculoplastic surgeon, but those beasts are

sometimes a bit rare in some places, especially paediatric-experienced

ones. The next most popular option is an ophthalmic surgeon with BPEI

and paediatric experience. There are other variations (e.g. plastic

surgeon with eyelid experience, etc), but what's most important is that

they have experience with paediatric BPEI repair, whatever the colour of

their spots.

> My feeling is he should have this corrected immediately so other

> aspects of his development aren't delayed by his vision impairment.

> How early is the first surgery usually done?

If the ptosis is interfering with and affecting sight or sight

development, it's fixed ASAP (the ptosis, but usually not the

blepharophimosis, methinks?). Otherwise, they usually leave it until

just before a kid starts school (then, the face has developed more, and

they will have fewer social issues to deal with) and do the ptosis along

with the bleph repair. But there are no hard & fast rules - it depends

on the kid and the doc.

I hope I can be of further help.

Rob W.

[Guest guest]

Rob,

Thanks for the info.

--

-------------- Original message -------------- Hello,> I am a foster mother and had a 3 month old baby placed with me 3 days > ago. His mother is mentally retarded and did little in the way of > exploring his eye problems, but he looks just like many of the kids > photos in the files. THe case worker told me he may be blind.You've done pretty well to find out the name of the syndrome and find this group in just three days! Especially with a 3-month-old bub to wrangle. I'm impressed.> His eyelids will only open about 2 mm, and he looks like he is always > asleep. He is definetely NOT blind. He squints his eyes tight in > bright sunlight and when I cradle him he tips his head back to look > out of his little slits. His eyes openings are very short > horizontally.The inability to open the eyelids is called ptosis. The horizontal narrowness of the openings is called blepharophimosis. These terms will come in handy when dealing with medical staff.> I have to take him to a pediatrician next week. What type of > referral should I ask for? Genetisist, pediatric eye doctor, or what?Many people look for an oculoplastic surgeon, but those beasts are sometimes a bit rare in some places, especially paediatric-experienced ones. The next most popular option is an ophthalmic surgeon with BPEI and paediatric experience. There are other variations (e.g. plastic surgeon with eyelid experience, etc), but what's most important is that they have experience with paediatric BPEI repair, whatever the colour of their spots.> My feeling is he should have this corrected immediately so other > aspects of his development aren't delayed by his vision impairment. > How early is the first surgery usually done?If the ptosis is interfering with and affecting sight or sight development, it's fixed ASAP (the ptosis, but usually not the blepharophimosis, methinks?). Otherwise, they usually leave it until just before a kid starts school (then, the face has developed more, and they will have fewer social issues to deal with) and do the ptosis along with the bleph repair. But there are no hard & fast rules - it depends on the kid and the doc.I hope I can be of further help.Rob W.

[Guest guest]

Tonnika,

I'm in Tallahassee Florida. I have been told the best eye doc here is Dr. Sherman. I have spent 2 days on the phone trying to change his medicaid plan so he can go to Dr. Sherman. Today I'm going to enroll him in Children's Medical Services, which is an early intervention type program, that is funded separately from Medicaid and may be a better way to go.

Of course, we may end up at Shands, in Gainesville, but that is only a couple hours from us. I met a friend of a friend who adopted a child with this and has been treated in Tampa by Dr. Guggins.

What are the chances that my baby will also have retardation? I haven't seen his mother, so I don't know if she has Bleph.

--

-------------- Original message --------------

Hi there, just wondering where you are from?? it makes it easier for people to give advice on doctors if there are any in the area that any of us have used... my son is Lynden (has pictures on the site, so take a look) he is 7 years old and has had his first surgery at 5 weeks old, it was necessary for him to have the surgery that early for it was really affecting his vision... we always got the "he is asleep" thing too plus the blind thing, it just got annoying... but like your child he was not BLIND either.... it varies when a doctor does the surgery on the different degrees of drooping and the doctors base it on how much of the pupil is covered. As for surgeries it all depends on the doctor because every doctor does different things... again it would be easier to know where you live to see if any of us live there too... talk to you soon

Tonikka and chris

-----Original Message-----From: agarrett4337 [mailto:agarrett00@...]Sent: March 26, 2005 11:30 AMblepharophimosis Subject: blepharophimosis New with a million questionsI am a foster mother and had a 3 month old baby placed with me 3 days ago. His mother is mentally retarded and did little in the way of exploring his eye problems, but he looks just like many of the kids photos in the files. THe case worker told me he may be blind.His eyelids will only open about 2 mm, and he looks like he is always asleep. He is definetely NOT blind. He squints his eyes tight in bright sunlight and when I cradle him he tips his head back to look out of his little slits. His eyes openings are very short horizontally.I have to take him to a pediatrician next week. What type of referral should I ask for? Genetisist, pediatric eye doctor, or what?My feeling is he should have this corrected immediately so other aspects of his development aren't delayed by his vision impairment. How early is the first surgery usually done? I saw one file photo where the girls eyelids were taped. Is this routinely done? Don't the eyes dry out if you do this?He is a sweet baby boy and I want to get him the best care possible in whatever time he is with me.

[Guest guest]

Hello - I am also from Tallahassee and would love to update you on the doctor and surgeon search I have undertaken since learning my 7 month old son has BPES. Yes, Dr. Sherman is awesome - we just saw him again this morning. We looked at both Gainesville and ville and were considering going to Atlanta. I would be happy to share my experiences and information in this regard.

If you'd like you may call my home number at 893-6050. ---Kim

-------------- Original message -------------- I am a foster mother and had a 3 month old baby placed with me 3 days ago. His mother is mentally retarded and did little in the way of exploring his eye problems, but he looks just like many of the kids photos in the files. THe case worker told me he may be blind.His eyelids will only open about 2 mm, and he looks like he is always asleep. He is definetely NOT blind. He squints his eyes tight in bright sunlight and when I cradle him he tips his head back to look out of his little slits. His eyes openings are very short horizontally.I have to take him to a pediatrician next week. What type of referral should I ask for? Genetisist, pediatric eye doctor, or what?My feeling is he should have this corrected immediately so other aspects of his development aren't delayed by his vision impairment. How early is the first surgery usually done? I saw one file photo where the girls eyelids were taped. Is this routinely done? Don't the eyes dry out if you do this?He is a sweet baby boy and I want to get him the best care possible in whatever time he is with me.

[Guest guest]

My son is 9 months old. Fortunately, he was diagnosed early with BPES at 3 months. Our doctor referred us to an eye specialist and then the eye specialist referred us to an eye surgeon. My son can and will have surgery in 3 months, at a year old. They don't have to wait till four or five to have the surgury. I didn't see where you are from but my surgeon is Dr. Guldburg. He is from the Jules Stein Institute at the UCLA medical center. It is the most prestigius eye centers in the entire state of California. My husband and I are not rich or anything, they take most medical insurance and this surgeon was shown on the discovery channel doing the same surgury my son will have. Hope some of this helps. agarrett4337 <agarrett00@...> wrote:

I am a foster mother and had a 3 month old baby placed with me 3 days ago. His mother is mentally retarded and did little in the way of exploring his eye problems, but he looks just like many of the kids photos in the files. THe case worker told me he may be blind.His eyelids will only open about 2 mm, and he looks like he is always asleep. He is definetely NOT blind. He squints his eyes tight in bright sunlight and when I cradle him he tips his head back to look out of his little slits. His eyes openings are very short horizontally.I have to take him to a pediatrician next week. What type of referral should I ask for? Genetisist, pediatric eye doctor, or what?My feeling is he should have this corrected immediately so other aspects of his development aren't delayed

by his vision impairment. How early is the first surgery usually done? I saw one file photo where the girls eyelids were taped. Is this routinely done? Don't the eyes dry out if you do this?He is a sweet baby boy and I want to get him the best care possible in whatever time he is with me.

[Guest guest]

Hi There and welcome to the group.. I hope you got some of the answers you were looking for. Have you seen the pediatrician yet.. You dont say where you are from.. or your name .... unless i missed something.. i tend to fly through the postings... anyway good luck and lets know how you get on...

Leah from NewZealand

blepharophimosis New with a million questions

I am a foster mother and had a 3 month old baby placed with me 3 days ago. His mother is mentally retarded and did little in the way of exploring his eye problems, but he looks just like many of the kids photos in the files. THe case worker told me he may be blind.His eyelids will only open about 2 mm, and he looks like he is always asleep. He is definetely NOT blind. He squints his eyes tight in bright sunlight and when I cradle him he tips his head back to look out of his little slits. His eyes openings are very short horizontally.I have to take him to a pediatrician next week. What type of referral should I ask for? Genetisist, pediatric eye doctor, or what?My feeling is he should have this corrected immediately so other aspects of his development aren't delayed by his vision impairment. How early is the first surgery usually done? I saw one file photo where the girls eyelids were taped. Is this routinely done? Don't the eyes dry out if you do this?He is a sweet baby boy and I want to get him the best care possible in whatever time he is with me.