Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 Hi Fancesco had her first op at Kings College Hospital London,Dr was the surgeon and she was great,emily was only in on day surgery.I am trying to post some photos but having trouble have downloaded to but cant seemed to download to group,but yes I would love to share photos. Speak soon fraolga <fraolga@...> wrote: Hi , we have a little girl Caterina 21 months old in the same condition. Where you had your first op ? May we share our pictures ? A bug hug, Francesco and Olga -----Messaggio originale-----Da: blepharophimosis [mailto:blepharophimosis ] Per conto di lott_tracyInviato: mercoledì 7 settembre 2005 19.50A: blepharophimosis Oggetto: blepharophimosis My Daughter Hi everyone.I have just found this group and what a breath of fresh air it is.My Daughter is 23months old and has BPES, we live in Kent in England and when she was born nobody knew what was wrong with her and thought she may be downs,even the opthamologist shook his head!.My son is autisic and we have work very close with his peadiatrian and I called her direct to ask for help at this point emily was 6 months old we were directed to guys hospital in London where gene testing was down and found to be BPES,I was told that only 1 in 20,000 children get this and usually its passed down,to date we cant find anybody in either side of the family who may of had it.She has had one lift and we now just wait until she is old enough to have further ops done.I just wanted to say it great to hear other families in the same boat,and I have giggled at the comments knowing exactly where your coming from. How much free photo storage do you get? Store your holiday snaps for FREE with Photos. Get Photos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 and Francesco My daughter Lily is 13 months old, she had ptosis repair at 6 weeks old and again at 6 months. Her picture is posted under " Lily " . I have BPES and so does my father and grandfather. Lily's surgery was in Washington, DC. Best wishes Beth > > Hi , > > > > we have a little girl Caterina 21 months old in the same condition. Where you had your first op ? May we share our pictures ? > > > > A bug hug, > > > > Francesco and Olga > > > > -----Messaggio originale----- > Da: blepharophimosis [mailto:blepharophimosis ] Per conto di lott_tracy > Inviato: mercoledì 7 settembre 2005 19.50 > A: blepharophimosis > Oggetto: blepharophimosis My Daughter > > > > Hi everyone.I have just found this group and what a breath of fresh air > it is. > My Daughter is 23months old and has BPES, we live in Kent in > England and when she was born nobody knew what was wrong with her and > thought she may be downs,even the opthamologist shook his head!.My son > is autisic and we have work very close with his peadiatrian and I > called her direct to ask for help at this point emily was 6 months old > we were directed to guys hospital in London where gene testing was down > and found to be BPES,I was told that only 1 in 20,000 children get this > and usually its passed down,to date we cant find anybody in either side > of the family who may of had it.She has had one lift and we now just > wait until she is old enough to have further ops done. > > I just wanted to say it great to hear other families in the same > boat,and I have giggled at the comments knowing exactly where your > coming from. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 Hi Beth My Goodness they dont mess around in the states doing surgery.In the uk they try and leave it as long as possible because in pass cases children have outgrown this condition ( which I have to say sounds strange). Will Lily need more surgery at a later date?. Have you finished all your surgery as in the uk my consultant told me emily after having her main lift done ( around 5-7 year old) it will only last 20 years.. Speak soon bethgordon03 <bethgordon03@...> wrote: and FrancescoMy daughter Lily is 13 months old, she had ptosis repair at 6 weeks old and again at 6 months. Her picture is posted under "Lily". I have BPES and so does my father and grandfather. Lily's surgery was in Washington, DC.Best wishesBeth> > Hi ,> > > > we have a little girl Caterina 21 months old in the same condition. Where you had your first op ? May we share our pictures ?> > > > A bug hug,> > > > Francesco and Olga> > > > -----Messaggio originale-----> Da: blepharophimosis [mailto:blepharophimosis ] Per conto di lott_tracy> Inviato: mercoledì 7 settembre 2005 19.50> A: blepharophimosis > Oggetto: blepharophimosis My Daughter > > > > Hi everyone.I have just found this group and what a breath of fresh air > it is.> My Daughter is 23months old and has BPES, we live in Kent in > England and when she was born nobody knew what was wrong with her and > thought she may be downs,even the opthamologist shook his head!.My son > is autisic and we have work very close with his peadiatrian and I > called her direct to ask for help at this point emily was 6 months old > we were directed to guys hospital in London where gene testing was down > and found to be BPES,I was told that only 1 in 20,000 children get this > and usually its passed down,to date we cant find anybody in either side > of the family who may of had it.She has had one lift and we now just > wait until she is old enough to have further ops done.> > I just wanted to say it great to hear other families in the same > boat,and I have giggled at the comments knowing exactly where your > coming from.> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Well unfortunately my daughter could not see at all, she couldn't open her eyes, so there wasn't any other option. Of course everyone would have preferred to wait. Yes she will need more surgery. I guess I could have more surgery if I chose to, probably could make some improvements but it's not that easy with a child who needs attention, work, life etc., > > > > Hi , > > > > > > > > we have a little girl Caterina 21 months old in the same condition. > Where you had your first op ? May we share our pictures ? > > > > > > > > A bug hug, > > > > > > > > Francesco and Olga > > > > > > > > -----Messaggio originale----- > > Da: blepharophimosis > [mailto:blepharophimosis ] Per conto di lott_tracy > > Inviato: mercoledì 7 settembre 2005 19.50 > > A: blepharophimosis > > Oggetto: blepharophimosis My Daughter > > > > > > > > Hi everyone.I have just found this group and what a breath of fresh > air > > it is. > > My Daughter is 23months old and has BPES, we live in Kent in > > England and when she was born nobody knew what was wrong with her > and > > thought she may be downs,even the opthamologist shook his head!.My > son > > is autisic and we have work very close with his peadiatrian and I > > called her direct to ask for help at this point emily was 6 months > old > > we were directed to guys hospital in London where gene testing was > down > > and found to be BPES,I was told that only 1 in 20,000 children get > this > > and usually its passed down,to date we cant find anybody in either > side > > of the family who may of had it.She has had one lift and we now > just > > wait until she is old enough to have further ops done. > > > > I just wanted to say it great to hear other families in the same > > boat,and I have giggled at the comments knowing exactly where your > > coming from. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Beth: Why did Lily have to have surgery again at 6 months? I'm asking because my son had his first fascia sling surgery at 10 months of age (he's 12 months old now) and although the surgery and recovery went great I'm not really seeing much improvement, only minimal improvement and certainly not the outcome the surgeon had predicted. We go back to the surgeon for a 2-month follow-up visit on the 19th so I'm curious to see what his reaction is to the surgery and if he'll suggest we try again. We go see our local pediatric opthalmologist next week and I'm expecting him to tell us if his vision is still compromised. Also, what material was used in Lily's sling? Thanks, Kim Tallahassee, FL -------------- Original message -------------- and FrancescoMy daughter Lily is 13 months old, she had ptosis repair at 6 weeks old and again at 6 months. Her picture is posted under "Lily". I have BPES and so does my father and grandfather. Lily's surgery was in Washington, DC.Best wishesBeth> > Hi ,> > > > we have a little girl Caterina 21 months old in the same condition. Where you had your first op ? May we share our pictures ?> > > > A bug hug,> > > > Francesco and Olga> > > > -----Messaggio originale-----> Da: blepharophimosis [mailto:blepharophimosis ] Per conto di lott_tracy> Inviato: mercoledì 7 settembre 2005 19.50> A: blepharophimosis > Oggetto: blepharophimosis My Daughter > > > > Hi everyone.I have just found this group and what a breath of fresh air > it is.> My Daughter is 23months old and has BPES, we live in Kent in > England and when she was born nobody knew what was wrong with her and > thought she may be downs,even the opthamologist shook his head!.My son > is autisic and we have work very close with his peadiatrian and I > called her direct to ask for help at this point emily was 6 months old > we were directed to guys hospital in London where gene testing was down > and found to be BPES,I was told that only 1 in 20,000 children get this > and usually its passed down,to date we cant find anybody in either side > of the family who may of had it.She has had one lift and we now just > wait until she is old enough to have further ops done.> > I just wanted to say it great to hear other families in the same > boat,and I have giggled at the comments knowing exactly where your > coming from.> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Kim, I feel the same way about Josh's surgery. We go for our 2 month post-op next week. He has a little improvement, but not much really. Because of the slit in his eyelid that scarred and gave the appearance of a crease, he appears more normal. But he still doesn't open his eyes very wide and they aren't exactly equal. I'm disappointed, but would be hesitant to try any more surgery very soon. I wasn't crazy about the surgeon. Annette --https://home.comcast.net/~agarrett00/ -------------- Original message -------------- Beth: Why did Lily have to have surgery again at 6 months? I'm asking because my son had his first fascia sling surgery at 10 months of age (he's 12 months old now) and although the surgery and recovery went great I'm not really seeing much improvement, only minimal improvement and certainly not the outcome the surgeon had predicted. We go back to the surgeon for a 2-month follow-up visit on the 19th so I'm curious to see what his reaction is to the surgery and if he'll suggest we try again. We go see our local pediatric opthalmologist next week and I'm expecting him to tell us if his vision is still compromised. Also, what material was used in Lily's sling? Thanks, Kim Tallahassee, FL -------------- Original message -------------- and FrancescoMy daughter Lily is 13 months old, she had ptosis repair at 6 weeks old and again at 6 months. Her picture is posted under "Lily". I have BPES and so does my father and grandfather. Lily's surgery was in Washington, DC.Best wishesBeth> > Hi ,> > > > we have a little girl Caterina 21 months old in the same condition. Where you had your first op ? May we share our pictures ?> > > > A bug hug,> > > > Francesco and Olga> > > > -----Messaggio originale-----> Da: blepharophimosis [mailto:blepharophimosis ] Per conto di lott_tracy> Inviato: mercoledì 7 settembre 2005 19.50> A: blepharophimosis > Oggetto: blepharophimosis My Daughter > > > > Hi everyone.I have just found this group and what a breath of fresh air > it is.> My Daughter is 23months old and has BPES, we live in Kent in > England and when she was born nobody knew what was wrong with her and > thought she may be downs,even the opthamologist shook his head!.My son > is autisic and we have work very close with his peadiatrian and I > called her direct to ask for help at this point emily was 6 months old > we were directed to guys hospital in London where gene testing was down > and found to be BPES,I was told that only 1 in 20,000 children get this > and usually its passed down,to date we cant find anybody in either side > of the family who may of had it.She has had one lift and we now just > wait until she is old enough to have further ops done.> > I just wanted to say it great to hear other families in the same > boat,and I have giggled at the comments knowing exactly where your > coming from.> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Lily's first surgery did not work, her right eye never really opened and the left only a little bit. Basically, the first doctor didn't know what he was doing. The right sling didn't work and then she developed a very bad infection. The new (wonderful) surgeon we found had to undo the first slings, then wait for all signs of infection to clear (massive antibiotics) then do it all over again. We are happy with the results, see her picture in the folder. She is smiling in the sun, but you get an idea what a sweet baby she is. I had one of mine done over when I was a baby, too. It sounds awful, and it was awful, the only we got through the first six months is that we are so in love with her. I hope Josh doesn't need his done over again. I remember your earlier postings and I didn't want to scare you... but for awhile the surgeon and opthalm. said, oh there is swelling, well let me tell you it didn't look like a normal amount of swelling to me, it looked infected, and it was. When Dr. G. did her surgery in January, the swelling was minimal, that same day she looked okay (except for giant blue stitches), and within weeks, we could go places etc., without drawing so much attention. Beth > > > > Hi , > > > > > > > > we have a little girl Caterina 21 months old in the same condition. > Where you had your first op ? May we share our pictures ? > > > > > > > > A bug hug, > > > > > > > > Francesco and Olga > > > > > > > > -----Messaggio originale----- > > Da: blepharophimosis > [mailto:blepharophimosis ] Per conto di lott_tracy > > Inviato: mercoledì 7 settembre 2005 19.50 > > A: blepharophimosis > > Oggetto: blepharophimosis My Daughter > > > > > > > > Hi everyone.I have just found this group and what a breath of fresh > air > > it is. > > My Daughter is 23months old and has BPES, we live in Kent in > > England and when she was born nobody knew what was wrong with her > and > > thought she may be downs,even the opthamologist shook his head!.My > son > > is autisic and we have work very close with his peadiatrian and I > > called her direct to ask for help at this point emily was 6 months > old > > we were directed to guys hospital in London where gene testing was > down > > and found to be BPES,I was told that only 1 in 20,000 children get > this > > and usually its passed down,to date we cant find anybody in either > side > > of the family who may of had it.She has had one lift and we now > just > > wait until she is old enough to have further ops done. > > > > I just wanted to say it great to hear other families in the same > > boat,and I have giggled at the comments knowing exactly where your > > coming from. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Anne, has Dr. Sherman seen Josh since his surgery. If so, what was his assessment? I guess the botttom line is if their vision isn't compromised no need to repeat anytime soon, but I'm concerned about the right eye which has always been more severe and he continues with the chin-up posture. Kim -------------- Original message -------------- Kim, I feel the same way about Josh's surgery. We go for our 2 month post-op next week. He has a little improvement, but not much really. Because of the slit in his eyelid that scarred and gave the appearance of a crease, he appears more normal. But he still doesn't open his eyes very wide and they aren't exactly equal. I'm disappointed, but would be hesitant to try any more surgery very soon. I wasn't crazy about the surgeon. Annette --https://home.comcast.net/~agarrett00/ -------------- Original message -------------- Beth: Why did Lily have to have surgery again at 6 months? I'm asking because my son had his first fascia sling surgery at 10 months of age (he's 12 months old now) and although the surgery and recovery went great I'm not really seeing much improvement, only minimal improvement and certainly not the outcome the surgeon had predicted. We go back to the surgeon for a 2-month follow-up visit on the 19th so I'm curious to see what his reaction is to the surgery and if he'll suggest we try again. We go see our local pediatric opthalmologist next week and I'm expecting him to tell us if his vision is still compromised. Also, what material was used in Lily's sling? Thanks, Kim Tallahassee, FL -------------- Original message -------------- and FrancescoMy daughter Lily is 13 months old, she had ptosis repair at 6 weeks old and again at 6 months. Her picture is posted under "Lily". I have BPES and so does my father and grandfather. Lily's surgery was in Washington, DC.Best wishesBeth> > Hi ,> > > > we have a little girl Caterina 21 months old in the same condition. Where you had your first op ? May we share our pictures ?> > > > A bug hug,> > > > Francesco and Olga> > > > -----Messaggio originale-----> Da: blepharophimosis [mailto:blepharophimosis ] Per conto di lott_tracy> Inviato: mercoledì 7 settembre 2005 19.50> A: blepharophimosis > Oggetto: blepharophimosis My Daughter > > > > Hi everyone.I have just found this group and what a breath of fresh air > it is.> My Daughter is 23months old and has BPES, we live in Kent in > England and when she was born nobody knew what was wrong with her and > thought she may be downs,even the opthamologist shook his head!.My son > is autisic and we have work very close with his peadiatrian and I > called her direct to ask for help at this point emily was 6 months old > we were directed to guys hospital in London where gene testing was down > and found to be BPES,I was told that only 1 in 20,000 children get this > and usually its passed down,to date we cant find anybody in either side > of the family who may of had it.She has had one lift and we now just > wait until she is old enough to have further ops done.> > I just wanted to say it great to hear other families in the same > boat,and I have giggled at the comments knowing exactly where your > coming from.> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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