Re: more questions about sling surgery and recovery

[Guest guest]

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]

Tessa:

My 18-month old son had his first sling surgery last July at 10 months of age. His surgeon (and all the surgeons we intereviewed prior to selecting one) never once mentioned arm restraints and he didn't scratch his eye or pull at them at any time during the recovery process. He slept through most of the day of surgery and that night and woke up the next morning as if nothing had ever happened. As I've gathered from others on this site his was a typical outcome.

On occasion a person has to have the sling surgery repeated for a variety of reasons. As the child grows the sling can stretch and become ineffective, or a fall or injury can result in the need to replace or repair a sling. My son is having his second surgery on Monday because the right eyelid did not get raised high enough during the last surgery and his lid is covering the pupil again. As I understand it, it can be tricky when a young child or infant requires the surgery and sometimes needs a second attempt to get it right - not exactly an exact science.

You will be amazed at how well Bipon will respond to the surgery. My prayers are with you and your family. God bless.

Kim

Tallahassee, FL

-------------- Original message -------------- From: "tessa_mackenzie" <tessamackenzie@...> Hi allI'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]

Thank you so very much for your message. Your message sounds so much

like what my mom tells me to encourage me when I begin to worry about

my daughter (18 months). Thank you again for your positive message

> > >

> > > 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]

Hi Tessa Our daughter Holly, aged one year, is due to have her first surgery at Moorfields Eye Hospital in May, the same procedure as Bipin. This is what I am led to believe....the temporary slings are placed so the eyes can develop properly. The temporary slings only need to last until the child is aged approx 4 - 5 years old because they will use muscle from their legs to use as permanent slings. These should last for life. I presume that if their pupils are not covered then the child only needs the permament slings because their eye development would not hinder in any way. I hope that makes sense and please forgive me if I have any information incorrect. In short, the temporary slings will only last for a few years and is purely done for the childs eye development (if any part of the pupil is covered). To have permament slings the

leg has to be a certain length, hence waiting until the age of 4 -5 years old. Thanks Kind regards Lucy, Gosport UKtessa_mackenzie <tessamackenzie@...> wrote: Hi allI'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

To help you stay safe and secure online, we've developed the all new Security Centre.

[Guest guest]

Dear all

Thanks 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

>

>

>

>

>

>

>

>

>

[Guest guest]

Lily underwent anesthesia 4 times before age 6 months and had no

complications. It was very scary and we were very grateful she had no

complications. I think pediatric anesthesiologists are very skilled.

take care

Beth (and Lily)

> > 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

> >

> >

> >

> >

> >

> >

> >

> >

> >