Re: Re: more questions about sling surgery and recovery

[Guest guest]

I was just reading all the posts. My daughter Jordan, who is now 8,

never scratched her eyes either. She has had two surgeries, both which

just lifted the lids. The last one was June of 2005. She did

wonderful. We have opted to wait until she is older to decide what

route is next. Jordan has a 20 yr. old half-sister who also has BLEPS.

She has never had any surgeries and other than having exotic looking

eyes, she is a beautiful girl She has lots of guys interested in her.

But the main reason we chose not have the " Big " surgery is that her

doctor recommended that we do this in baby steps. My husband had the

" big " surgery; wire between the eyes and everything. He has some

scaring. I want to do what will have minimal scaring for her. Jordan's

eyes seem to have a acceptable width to them, like her sister, so the

lifting has really helped. She does wear glasses but so do I and two of

her other sister's that don't have Bleph. Could be heredity... Her eye

started to show signs of being lazy when she was 2 but her Dr. quickly

put us on a atropine drop which blurs the vision abit. This has no

lasting side affects. We put that in her good eye once a day. That

worked beautifully. We did that for almost a year. No more drops, no

patching and no lazy eye. No side affects from that either. Jordan's

temporary slings lasted from when she was 14 months to June of 05. Then

they only came down abit...not really noticeable but the doctor noticed

it. Good Luck to you all.. I am very lucky to have Jordan. She is an

inspiration to me and all of our family. She has done so well with all

her surgeries and she doesn't seem to have any problems at school.

Everyone loves her. Her friends didn't want her to have this surgery in

June. They told her they loved her the way she is....How

Sweet....Kids! Gotta love them. I'm sure that sometime in the future

someone will make some negative comment to her about it but it would be

the same if she has " buck " teeth and needed braces or had acne??? Trust

me....I have 6 children with Jordan being the youngest. My other

children were more affected by things than Jordan seems to be. Two of

my girls have red hair....when they were little people would tease

them....NOW they are 19 and have the most beautiful Auburn colored

hair...and the guys love it...so go figure....There is always something

that some kids will tease about...But the most important thing is to be

confident in who you are, regardless of anything. Wish you all well!

Beaver

bethgordon03 wrote:

> My daughter had surgery at 6 months and never scratched her eyes. I

> had several surgeries between 1 yr and 4 yrs old and my parents never

> used any type of restraints on me. I think it depends on the child. I

> don't think the slings bother the child, and if anything, being able

> to see better is wonderful for them. Lily was thrilled when we

> brought her home and she could so much more and track things like the

> dog running around.

>

> My Lily (18 mos) has the " temporary " slings. I can't say for certain

> how long they will last or if they could last permanently, perhaps

> the will. Our thinking is that, Lily will certainly need the

> canthioplasty (procedure on area around nose bridge) since that will

> make her eyes wider, that procedure combined with her growing body,

> when she is older she will need new slings to open her eyes even

> wider. If you can imagine how the eyes being made wider will impact

> the lids. She clears the pupil and looks wonderful but of course her

> eyes at this stage are still small, and we look for an improvement

> with the combination of her growth and future procedures. Her

> eyesight is making improvements but still her eyesight is limited

> compared to other children, her right eye is lazy and we are patching.

>

> That said, it is very hard knowing they will undergo future

> surgeries. My husband and I already feel heartsick whenever we think

> of going through it again, but truly it's okay, you get through it

> and if you trust your doctor and believe it's in the child's best

> interest, then you can do it.

>

> I hope this helps somewhat. There are so many variables.

>

>

> >

> > Hi all

> > I've mentioned before that our son Bipin is having his first

> surgery at

> > in a month's time at Moorfields. As it gets closer I'm getting a

> bit

> > nervous and finding that I have more questions about what happens

> post-

> > op. Several of you have written about arm restraints... scary

> thought.

> > Bipin's a very active and cheekly little 1 year old and I just

> can't

> > imagine him dealing at all with arm restraints - but is this the

> only

> > way of stopping him scratching at his eyes? Is he likely to try and

> > scratch his eyes? And how delicate is the area that they operate

> on?

> > and how long for? Also he sleeps on his front, and generally rubs

> his

> > face into the bed for a while before falling asleep, what does that

> > mean for his eyes healing?

> > I'd really appreciate some feedback from any of you who have had

> > experience of this.

> >

> > Also, Mr Collin described the surgery as temporary but I'm

> wondering

> > what that really means. If his eyesight develops properly after

> this op

> > and we decided for him not to have any more surgery after this one

> is

> > it going to look like he's had half the job done? or will his eyes

> > really just go back to looking like they do now? My husband Jakesh

> has

> > BPES and had the whole series of ops as a kid (but older than 1),

> as

> > did his brother, but his sister has not had any. So I'm wondering

> what

> > it would be like to just have the first one and then no others.

> > anyway would be great to read your thoughts.

> > Tessa

> >

>

>

>

>

>

>

>

[Guest guest]

I could have written this myself. Exactly the way I feel. My kids 11 & 14 have had serveral surgeries as the grew. I would do the same with (9 months). As to touching the area, my children never did.The never wore restraints and the area was fine. They never had and pain or disconfort so I think that is why they never touched the area. We didn;t find the area to be delicate at all they slept whatever way they were confortable. Good Luck bethgordon03 <bethgordon03@...> wrote: My daughter had surgery at 6 months and never scratched her eyes. I had several surgeries between 1 yr and 4 yrs old and my parents never used any type of restraints on me. I think it depends on the child. I don't think the slings bother the child, and if anything, being able to see better is wonderful for

them. Lily was thrilled when we brought her home and she could so much more and track things like the dog running around.My Lily (18 mos) has the "temporary" slings. I can't say for certain how long they will last or if they could last permanently, perhaps the will. Our thinking is that, Lily will certainly need the canthioplasty (procedure on area around nose bridge) since that will make her eyes wider, that procedure combined with her growing body, when she is older she will need new slings to open her eyes even wider. If you can imagine how the eyes being made wider will impact the lids. She clears the pupil and looks wonderful but of course her eyes at this stage are still small, and we look for an improvement with the combination of her growth and future procedures. Her eyesight is making improvements but still her eyesight is limited compared to other children, her right eye is lazy and we are

patching.That said, it is very hard knowing they will undergo future surgeries. My husband and I already feel heartsick whenever we think of going through it again, but truly it's okay, you get through it and if you trust your doctor and believe it's in the child's best interest, then you can do it.I hope this helps somewhat. There are so many variables.>> Hi all> I've mentioned before that our son Bipin is having his first surgery at > in a month's time at Moorfields. As it gets closer I'm getting a bit > nervous and finding that I have more questions about what happens post-> op. Several of you have written about arm restraints... scary thought. > Bipin's a very active and cheekly little 1 year old and I just can't > imagine him dealing at all with arm restraints - but is

this the only > way of stopping him scratching at his eyes? Is he likely to try and > scratch his eyes? And how delicate is the area that they operate on? > and how long for? Also he sleeps on his front, and generally rubs his > face into the bed for a while before falling asleep, what does that > mean for his eyes healing?> I'd really appreciate some feedback from any of you who have had > experience of this. > > Also, Mr Collin described the surgery as temporary but I'm wondering > what that really means. If his eyesight develops properly after this op > and we decided for him not to have any more surgery after this one is > it going to look like he's had half the job done? or will his eyes > really just go back to looking like they do now? My husband Jakesh has > BPES and had the whole series of ops as a kid (but older than 1), as > did his

brother, but his sister has not had any. So I'm wondering what > it would be like to just have the first one and then no others. > anyway would be great to read your thoughts.> Tessa><a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>

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has gone under 3 times already, all were fine. They wake up all crying and upset which lasts sometimes an hr or so depending on how long they were under. Other than that nothing long lasting. tessa_mackenzie <tessamackenzie@...> wrote: Dear allThanks so much for your responses and support. It really helps hearing other people's experiences. I'm sure Bipin will be just fine -he's a tough little character anyway, and he's in very good hands with Mr Collin at Moorfields. It's just that he's so perfect and gorgeous that I hate the thought of him going under the knife! oh and another thing that has just occurred to me - did any of your kids experience any side-effects with the general anaesthetic at this age? or do they just wake up and carry on as normal?thanks again!Tessa> Hi all> I've mentioned before that our son Bipin is having his first surgery at > in a month's time at Moorfields. As it gets closer I'm getting a bit > nervous and finding that I have more questions about what happens post-> op. Several of you have written about arm restraints... scary thought. > Bipin's a very active and cheekly little 1 year old and I just can't > imagine him dealing at all with arm restraints - but is this the only > way of stopping him scratching at his eyes? Is

he likely to try and > scratch his eyes? And how delicate is the area that they operate on? > and how long for? Also he sleeps on his front, and generally rubs his > face into the bed for a while before falling asleep, what does that > mean for his eyes healing?> I'd really appreciate some feedback from any of you who have had > experience of this. > > Also, Mr Collin described the surgery as temporary but I'm wondering > what that really means. If his eyesight develops properly after this op > and we decided for him not to have any more surgery after this one is > it going to look like he's had half the job done? or will his eyes > really just go back to looking like they do now? My husband Jakesh has > BPES and had the whole series of ops as a kid (but older than 1), as > did his brother, but his sister has not had any. So I'm wondering what > it

would be like to just have the first one and then no others. > anyway would be great to read your thoughts.> Tessa> > > > > > > > >