Re: eye patching

[Guest guest]

-

Sorry to hear about the atresia thing. Hope he's able to fix it up

good. And you're right, you gotta get everyone in there while she's

asleep. Good luck planning it all!

Aubrie has one terrible eye and one good eye. When the bad eye was

patched for a VER test, she didn't mind. When they patched the good eye

tho, watch out! She couldn't tolerate it. Our doc has ruled out

patching for her because her bad eye is so bad that it wouldn't help and

would just be torture for her. So, she's already had one eye muscle

surgery to align the bad eye.

Have you tried a bulb syringe to suck the gunk out of her mouth and

throat? We've used one on Aubrie with success. Thank goodness we don't

need to anymore.

Thanks for the update! Take care!

Michele

mom to Aubrie (10 mos) CHargE and (7 next week)

IL

westml@...

[Guest guest]

wrote:

I have a question, this g tube thing is getting me down. They left me

with absolutely NO care instructions as to the site, and this morning as

I went to change her dressing to bath her, it was bleeding, and there

was a lot more than usual of that green hard stuff all around the site.

I don't know what I'm supposed to do with it <I bawled for about a half

hour - don't like to see her bleed>, or what I'm supposed to put on it.

Everytime I asked someone before we left the hospital post op said " Oh,

just water, just clean it with water " . Well, BS! You can't get that

hard gunky green stuff off with water, and I don't know what is safe to

put around there because it's an opening into her body, plus the fact

that I don't know what is safe for the tube. Any ideas?

-

I just use a washcloth and water and my thumb to scrape it off-the

green stuff is a reaction to the tube foreign body. We put A & D

ointment on the clean, dry skin only (not on the tube, A & D ointment

is a petroleum product that may decrease the life of the tube if

placed on the tube). We use the A & D to protect the skin from any

leakage of stomach acids. Is there a lot of granulation tissue

around the site to contribute to bleeding or is the tube/site getting

bumped? Thankfully, we have not had the bleeding thing.

Cheryl, , (5), (3, CHaRGE)

Okemos, MI

[Guest guest]

Michele,

I don't know what to do about the eye patching thing - Kennedy is SO

strong willed that I can only keep it on her for about 1/2 hr...and she

will just slip her thumb up under it and peel it off <and drop it on the

floor if it suits her> I don't know how to keep it on, she's way to

feisty she'll claw it off if she doesn't want it, but sometimes it

doesn't bother her and she just looks around or watches TV or whatever.

I wish some of the docs who try to get us to do this stuff could come

home and try it with us. Wouldn't that be great? They'd get an

eye-opener <excuse the pun>.

As for the bulb syringe, I don't know how to use it, I have one, but

haven't used it yet. Of course, they just sent me home from the

hospital with no instructions, just " here in case of emergency " on the

way out the door. My ped says if Kennedy is gunky enough to be

suctioned she should be in the hospital, well, I really don't want to

live in the hospital my whole life. I just stuff a kleenex in her mouth

as far as I can and sweep whatever I get out of it. Pretty gross eh?

I have a question, this g tube thing is getting me down. They left me

with absolutely NO care instructions as to the site, and this morning as

I went to change her dressing to bath her, it was bleeding, and there

was a lot more than usual of that green hard stuff all around the site.

I don't know what I'm supposed to do with it <I bawled for about a half

hour - don't like to see her bleed>, or what I'm supposed to put on it.

Everytime I asked someone before we left the hospital post op said " Oh,

just water, just clean it with water " . Well, BS! You can't get that

hard gunky green stuff off with water, and I don't know what is safe to

put around there because it's an opening into her body, plus the fact

that I don't know what is safe for the tube. Any ideas?

Thanks,

Mom to Kennedy 8 mos old CHARGEr, 9, 7, and wife to Graeme

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

Graeme & Weir wrote:

>

>

>

> Michele,

> I don't know what to do about the eye patching thing - Kennedy is SO

> strong willed that I can only keep it on her for about 1/2 hr...and she

> will just slip her thumb up under it and peel it off <and drop it on the

> floor if it suits her> I don't know how to keep it on, she's way to

> feisty she'll claw it off if she doesn't want it, but sometimes it

> doesn't bother her and she just looks around or watches TV or whatever.

> I wish some of the docs who try to get us to do this stuff could come

> home and try it with us. Wouldn't that be great? They'd get an

> eye-opener <excuse the pun>.

> As for the bulb syringe, I don't know how to use it, I have one, but

> haven't used it yet. Of course, they just sent me home from the

> hospital with no instructions, just " here in case of emergency " on the

> way out the door. My ped says if Kennedy is gunky enough to be

> suctioned she should be in the hospital, well, I really don't want to

> live in the hospital my whole life. I just stuff a kleenex in her mouth

> as far as I can and sweep whatever I get out of it. Pretty gross eh?

> I have a question, this g tube thing is getting me down. They left me

> with absolutely NO care instructions as to the site, and this morning as

> I went to change her dressing to bath her, it was bleeding, and there

> was a lot more than usual of that green hard stuff all around the site.

> I don't know what I'm supposed to do with it <I bawled for about a half

> hour - don't like to see her bleed>, or what I'm supposed to put on it.

> Everytime I asked someone before we left the hospital post op said " Oh,

> just water, just clean it with water " . Well, BS! You can't get that

> hard gunky green stuff off with water, and I don't know what is safe to

> put around there because it's an opening into her body, plus the fact

> that I don't know what is safe for the tube. Any ideas?

>

> Thanks,

>

> Mom to Kennedy 8 mos old CHARGEr, 9, 7, and wife to Graeme

>

> --

> Graeme & Weir

> gweir@...

> http://www.geocities.com/SunsetStrip/Palms/5716

>

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

>

[Guest guest]

Cheryl Swenson wrote:

>

> -

> I just use a washcloth and water and my thumb to scrape it off-the

> green stuff is a reaction to the tube foreign body. We put A & D

> ointment on the clean, dry skin only (not on the tube, A & D ointment

> is a petroleum product that may decrease the life of the tube if

> placed on the tube). We use the A & D to protect the skin from any

> leakage of stomach acids. Is there a lot of granulation tissue

> around the site to contribute to bleeding or is the tube/site getting

> bumped? Thankfully, we have not had the bleeding thing.

Cheryl,

She just got her first thingy of granulation tissue <I damn near died

when I saw it> as you can tell, I'm not getting any more used to the

grossness of this g tube thing. So, I don't think it's that, it's just

a little knob of it on one side, I think it's the green junk growing

onto her stomach <or fusing to it> and when I have to get all the bloody

tape off before a bath, it moves the tube of course and jars the green

junk off of her stomach. <kind of like it scabs over, and when I move

the tube it rips the scab off> This is now what I believe caused the

bleeding this morning. Of course at the time, I just was irrational and

bawled to my husband about not even being able to have a " normal " bath!

Anyway, I have no idea what A & D ointment is, could you fill me in? I

will ask her ped about it. I find with the green stuff, after a good

soak most of it comes off, or loosens up enough for me to wipe gently

with a kleenex to get the rest off. It makes me feel so bad when I move

the scab stuff and she cries <she rarely cries out in " pain " type

crying>.

Anyway, the g tube saga continues, and I appreciate your help,

Sincerely,

Mom to Kennedy 8 mos old CHARGEr, 9, 7 and wife to Graeme

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

Jeanie,

One little tube causing all this trouble, I tell ya. Well, all we can

do is look forward to the button and hope that the " gunk " ISN'T greener

on the other side of the g tube!

PS Thanks for the peroxide/neosporin tips, I wanted to do that today,

but wasn't sure what was/wasn't safe to put there.

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

wrote:

Anyway, I have no idea what A & D ointment is, could you fill me

in?

-

Vitamin A & D ointment is an over the counter ointment that you should

be able to find at a pharmacy. It is somewhat like vaseline with

vitamins-therefore, you need to avoid getting it on the tube. We use

KY jelly (water based) to lubricate the MicKey button before we

install a new one. We use the A & D ointment to protect the skin

around the button from acids, friction, etc.

Cheryl, , (5), (3, CHaRGE)

Okemos, MI

[Guest guest]

Hi, Jeannie.

What's a Hollister clamp and why are you addicted to it?

Anne Vanderbloemen, mom of , 18 months CHArgE

Madison, WI

[Guest guest]

Cheryl Swenson wrote:

>

>

Cheryl,

Thanks for the tips, I will see if I can find it. I've found over the

past few days that changing the dressing more frequently around the site

is helping. Next week I will be doing my first stint with Silver

Nitrate stix...that should be fun...

Mom to Kennedy 8 mos old CHARGEr, 9, 7, and wife to Graeme

> -

> Vitamin A & D ointment is an over the counter ointment that you should

> be able to find at a pharmacy. It is somewhat like vaseline with

> vitamins-therefore, you need to avoid getting it on the tube. We use

> KY jelly (water based) to lubricate the MicKey button before we

> install a new one. We use the A & D ointment to protect the skin

> around the button from acids, friction, etc.

>

> Cheryl, , (5), (3, CHaRGE)

> Okemos, MI

>

>

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

and Graeme

As I mentioned in my previous email, we patched Caitlyn's eyes. The

only problem we had, is that after patching her good eye for the

prescribed number of hours a day for the prescribed number of weeks, the

dr would find that her " bad " eye was now her " good " eye and we had to

patch the other eye. It was time consuming and the patches caused

rashes on her eyes but it worked.

Michele has a point, but if Jaecob does not have colobomas or any other

unfixable vision problem, than patching will be the key to helping the

surgery be successful. The only reason Caitlyn's surgery wasn't real

successful is because of her nystagmus. The nystagmus (beating back and

forth of the eyes) increases the more midline her eyes are which make

everything blurry so she reverts back to crossing (or now outward).

BTW, to keep things comical, I drew pictures or put stickers on top of

the patch. That way when other kids stared, they had something amusing

to look at instead of feeling sorry for her they wanted a sticker too.

I let their moms deal with telling them no.

jeanne

[Guest guest]

-

We (us & doc) decided it would be cruel and useless to patch Aubrie's

good eye because her poor was is so bad. I'm actually glad we don't

have to worry about it.

Michele

Aubrie's mom

[Guest guest]

Michele Westmaas wrote:

>

> -

> We (us & doc) decided it would be cruel and useless to patch Aubrie's

> good eye because her poor was is so bad. I'm actually glad we don't

> have to worry about it.

>

Michele,

I'm beginning to wonder if that is the case with Kennedy, she cries

unmercifully sometimes when it's on for no other apparent reason, and

the minute it comes off and she opens up that little eye, she just

brightens up brighter than the sunshine. They want it six hours a day?

I put it on at around 9 in the morning and when Kennedy gets it off, it

stays off. I'm not going to hold the kid down and make her scream and

cry into a fit of coughing and gagging. She's quite adept at getting it

off too, she can get her little thumb up underneath a corner of it when

she squinches up her nose and she uses her thumb and forefinger to

daintily pull it off and drop it off the side of her chair. <OT was

glad to hear of this fine motor developement!>...ophthamology may not be

as pleased...oh well...c'est la vie in CHARGEland...

>

>

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

,

It's so hard to know what's right, and who to listen

to...ophthamologists telling you one thing, optometrists

another...argh! This is so frustrating. I just put the patch on until

she gets it off, and that's it! I was told a long time ago you can't

correct coloboma...so I really don't understand the patching. <

wonders if the docs have not had much experience with coloboma and are

just doing the normal " kid " thing to do when one eye's vision is

superior to the other...hmmmmm>

Mom to Kennedy 8 mos old CHARGErette, 9, 7, and wife to Graeme

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

Cheryl Swenson wrote:

>

> Good luck with this frustrating experience of eye patching-during the

> early stages we used No Nos, a prescription restraint that prevents

> the child from bending their arms and thereby denies access to

> removing the patch. This was helpful because the restraints were the

> bad guys rather than mom and dad. Eye patching has definitely

> preserved 's ability to use both of his eyes and to use them

> together.

>

Cheryl,

There are so many opposing opinions on this...as for those no nos - that

wouldn't be an option for me, I refuse to tie her down ever again,

unless she's in cardiac arrest or something. I had to do it for five

months just to feed her and I just couldn't do it again. I'll have to

face the consequences. We have tried doing things with her to entertain

her <believe me, you have never seen two sillier adults> but Kennedy is

extremely belligerent when she wants to be and there's no stopping her

when her mind is set. I can see the good points of patching, but there

seems to be another side of things wherein " if " the vision can NOT be

improved as a result of patching, it can severely damage things in the

vision realm altogether. I think I " ll do what I can with the patching

and take my chances on one good eye. Probably sounds bad to some

people, but I just can not put this kid through anymore than I already

have to do to her.

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

Cheryl Swenson wrote:

> Good luck with this frustrating experience of eye patching-during the

> early stages we used No Nos, a prescription restraint that prevents

> the child from bending their arms and thereby denies access to

> removing the patch. This was helpful because the restraints were the

> bad guys rather than mom and dad. Eye patching has definitely

> preserved 's ability to use both of his eyes and to use them

> together.

>

Cheryl,

There are so many opposing opinions on this...as for those no nos - that

wouldn't be an option for me, I refuse to tie her down ever again,

unless she's in cardiac arrest or something. I had to do it for five

months just to feed her and I just couldn't do it again. I'll have to

face the consequences. We have tried doing things with her to entertain

her <believe me, you have never seen two sillier adults> but Kennedy is

extremely belligerent when she wants to be and there's no stopping her

when her mind is set. I can see the good points of patching, but there

seems to be another side of things wherein " if " the vision can NOT be

improved as a result of patching, it can severely damage things in the

vision realm altogether. I think I " ll do what I can with the patching

and take my chances on one good eye. Probably sounds bad to some

people, but I just can not put this kid through anymore than I already

have to do to her.

Hello again !

The no nos do not restrain the child from movement at all except that

they are unable to bend at the elbows. could crawl, move,

hold things, etc. It would be great if you could determine from the

ophthalmologist if central vision is affected in either eye.

has superior, but not central vision affected. The no nos would not

work for tube feeding because they do not restrict mobility. Our only

alternative when was younger was for mom and dad to restrain

his arms and prevent his hands from reaching up to the patch-far

less pleasant for everyone. : ( We found it much easier to be the

good guys providing entertainment rather than restraint.

Cheryl, , (5), (3, CHaRGE)

Okemos, MI

[Guest guest]

wrote:

It's so hard to know what's right, and who to listen

to...ophthamologists telling you one thing, optometrists

another...argh! This is so frustrating. I just put the patch on until

she gets it off, and that's it! I was told a long time ago you can't

correct coloboma...so I really don't understand the patching. <

wonders if the docs have not had much experience with coloboma and are

just doing the normal " kid " thing to do when one eye's vision is

superior to the other...hmmmmm>

Hi !

The patching helps to correct the lazy eye, not the coloboma-which

cannot be fixed. It was our understanding that 1-2 hours per day was

a good amount and that you could patch too much which could be

harmful. The whole idea is to force the lazy eye to focus and " see "

by patching the dominant eye. By forcing the weak eye to work for

small portions of the day, it retains the ability to focus and then

the rest of the day is for the eyes to practice working together. If

central vision is severely affected by the coloboma, this eye would

not be able to see centrally regardless of patching. It seems that

many of the kids do see better than was predicted when they were

younger. 's original ophthalmologist was afraid that his

vision would be very poor or legally blind. His vision was tested by

another ophthalmologist later to be 20/20!!!!! except for the

superior colobomas. Currently, he is slightly near sighted in one

eye and slightly far sighted in the other eye and has just started

wearing glasses in the last couple weeks because we were told that

there was no way that he could use both eyes at the same time with

one eye seeing well close up and the other far away. He is

tolerating this very well and looks like a little scholar with his

glasses. Too bad strangers think that the " little baby with the

glasses is sooo cute " and then they notice the hearing aids and

apparently do not think that that is sooo cute. : (

We still patch his stronger eye every day for one to two hours-this

is allowing him to use both eyes together, maintain the use of his

weaker eye, and a side benefit is his physical appearance-when the

first thing that a stranger notices about a child is that they look

different, they start forming opinions... It is easier for the child

to form relationships with others when the first thing that is

noticed is that s/he is cute. : )

Cheryl, , (5), (3, CHaRGE)

Okemos, MI

[Guest guest]

wrote:

I don't know, I still don't know if I could even use something like

that. I guess I baby her alot because I'm sick of doing " therapy "

stuff, and want to play more and do baby stuff more than work lately.

We had it on for an hour today. We had one three hour day so far but

that's the record!

Hi !

Sounds like you are doing GREAT with one or more hours per day. We

were told NOT to exceed 2 hours per day and we are THANKFUL for

that!!!

Cheryl, , (5), (3, CHaRGE)

Okemos, MI

[Guest guest]

Cheryl,

I don't know, I still don't know if I could even use something like

that. I guess I baby her alot because I'm sick of doing " therapy "

stuff, and want to play more and do baby stuff more than work lately.

We had it on for an hour today. We had one three hour day so far but

that's the record!

> Hello again !

> The no nos do not restrain the child from movement at all except that

> they are unable to bend at the elbows. could crawl, move,

> hold things, etc. It would be great if you could determine from the

> ophthalmologist if central vision is affected in either eye.

> has superior, but not central vision affected. The no nos would not

> work for tube feeding because they do not restrict mobility. Our only

> alternative when was younger was for mom and dad to restrain

> his arms and prevent his hands from reaching up to the patch-far

> less pleasant for everyone. : ( We found it much easier to be the

> good guys providing entertainment rather than restraint.

>

> Cheryl, , (5), (3, CHaRGE)

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

Cheryl,

Thanks for the info. Kennedy is far sighted in both eyes, but the

ophthamologist says that could correct itself, and that we would know

more when she was about a year old. About the people not thinking the

hearing aids are cute, I can't imagine why, I had to pick a color for

Kennedy's molds, purple, bright blue, hot pink, blue/red swirl, etc, I

think that's great they have different colors for the kids to choose! I

chose clear, it's going to be bulky looking enough <it collapses her

whole lil ear> without having the neon scene going on. She'll probably

change it when she gets older though!

>

> Hi !

> The patching helps to correct the lazy eye, not the coloboma-which

> cannot be fixed. It was our understanding that 1-2 hours per day was

> a good amount and that you could patch too much which could be

> harmful. The whole idea is to force the lazy eye to focus and " see "

> by patching the dominant eye. By forcing the weak eye to work for

> small portions of the day, it retains the ability to focus and then

> the rest of the day is for the eyes to practice working together. If

> central vision is severely affected by the coloboma, this eye would

> not be able to see centrally regardless of patching. It seems that

> many of the kids do see better than was predicted when they were

> younger. 's original ophthalmologist was afraid that his

> vision would be very poor or legally blind. His vision was tested by

> another ophthalmologist later to be 20/20!!!!! except for the

> superior colobomas. Currently, he is slightly near sighted in one

> eye and slightly far sighted in the other eye and has just started

> wearing glasses in the last couple weeks because we were told that

> there was no way that he could use both eyes at the same time with

> one eye seeing well close up and the other far away. He is

> tolerating this very well and looks like a little scholar with his

> glasses. Too bad strangers think that the " little baby with the

> glasses is sooo cute " and then they notice the hearing aids and

> apparently do not think that that is sooo cute. : (

> We still patch his stronger eye every day for one to two hours-this

> is allowing him to use both eyes together, maintain the use of his

> weaker eye, and a side benefit is his physical appearance-when the

> first thing that a stranger notices about a child is that they look

> different, they start forming opinions... It is easier for the child

> to form relationships with others when the first thing that is

> noticed is that s/he is cute. : )

>

> Cheryl, , (5), (3, CHaRGE)

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

BTW, to keep things comical, I drew pictures or put stickers on top of

the patch. That way when other kids stared, they had something amusing

to look at instead of feeling sorry for her they wanted a sticker too.

I let their moms deal with telling them no.

Jeanne,

I was talking to a friend of mine last night who is 61 years old. When she was

a child she had to have one eye patched (I don't know the reason) and she

insisted her mom make the patch w/ matching material from her dresses. My

friend had a different patch to match each dress and loved every one. She

still remembers her patches fondly and the loving touches her mother made to

make this difficult time easier.

Staten Island, NY

[Guest guest]

wrote:

Most people I talk to say they were only told to patch 1 or 2 hrs a

day. Six hours <1/2 of her awake time> seems excessive.

Hi !

I agree and it may be wise to seek a second opinion on this one. I

know several people in their 20s who were patched for long periods as

kids and now are unable to use both eyes together-not enough time

with both eyes unpatched practicing working together.

Cheryl, , (5), (3, CHaRGE)

Okemos, MI

[Guest guest]

Cheryl,

Most people I talk to say they were only told to patch 1 or 2 hrs a

day. Six hours <1/2 of her awake time> seems excessive.

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716