Update on

February 16, 2007

Whoa, . Prayers that you will find some answers here because

if this is coming from a " Wound care specialist " , then what?

Hopefully the specialist could contact other medical personnel in

this field to see what other treatments have been done?

I can see hitting his head, seems like he is trying to make the

pain go away having something different or discomfort going on.

I'm sorry, could you update a little " How did the open wound happen? "

Please do not feel if this was a waste of your time, see it as

searching for answers and you just never know when this happens,

Sorry it did not happen that day but hang in there because you are in

our prayers for them to be answered to give you that hope needed that

there are variety of methods and hopefully another medical physician

could consult with this current physician to assist .

Have you tried in the mean time tried other methods in the mean time

to decrease some of his behavior which is connected to this medical

problem having a certified ABA therapist in this area? I noticed you

mentioned about the protective equipment this was another suggestion

but then like you had mentioned the bandage would move.

What a year to read everyone's kids challenging medical issues going

on.

Many hugs!

Irma,18,DS/ASD

>

> Today I took to a Wound Care Specialist about his the open

wound

> on his head. The doctor said that due to the fact hits his

head

> there is no " magic bullet " to help him heal faster.That since I

just

> got this helmet for we can only hope will wear it.It they

> try to regrow the skin has to let the patch alone on his head

for

> 7 days and even if he did wear the helmet the bandage would move

under

> the helmet and this would not work.If they put in the

hospital

> cut it open, and stitch it up, the wound would be bigger and still

not

> heal.We got to the appointment at 8:45a.m.,did not see the Dr.

until

> 10:30a.m. and saw the Dr. for 15 minutes.I feel this was a waste of

my

> time.I cannot believe there is absolutely nothing they can do.What

a

> waste of me taking off work and not sending to school.I told

the

> Dr. I was tired of dealing with the open sore but he did not have

> another answer. Now I do not know what to do. Cyndi B

>

February 16, 2007

Irma, Back in July got cellulitis of the face and head. The

Dr.'s said in their opinion this open place on his head was a

bite.But they did not know what bite him. looked like he had

been in a Rocky movie.He looked like he had elephant mans syndrome

and his eyes looked purple like someone boxed him in the eyes. They

totally swelled shut.Back in July I posted a pic of him but I do not

know if it is still on our website.The open soar went away even with

him hitting it but it came back.I am at a lost for making it go

away. I am tired of dealing with this sore that he makes

bleed.Thanks for the prayers.

>

> Whoa, . Prayers that you will find some answers here

because

> if this is coming from a " Wound care specialist " , then what?

> Hopefully the specialist could contact other medical personnel in

> this field to see what other treatments have been done?

> I can see hitting his head, seems like he is trying to make

the

> pain go away having something different or discomfort going on.

> I'm sorry, could you update a little " How did the open wound

happen? "

> Please do not feel if this was a waste of your time, see it as

> searching for answers and you just never know when this happens,

> Sorry it did not happen that day but hang in there because you are

in

> our prayers for them to be answered to give you that hope needed

that

> there are variety of methods and hopefully another medical

physician

> could consult with this current physician to assist .

> Have you tried in the mean time tried other methods in the mean

time

> to decrease some of his behavior which is connected to this

medical

> problem having a certified ABA therapist in this area? I noticed

you

> mentioned about the protective equipment this was another

suggestion

> but then like you had mentioned the bandage would move.

> What a year to read everyone's kids challenging medical issues

going

> on.

> Many hugs!

>

> Irma,18,DS/ASD

>

> >

> > Today I took to a Wound Care Specialist about his the open

> wound

> > on his head. The doctor said that due to the fact hits his

> head

> > there is no " magic bullet " to help him heal faster.That since I

> just

> > got this helmet for we can only hope will wear it.It

they

> > try to regrow the skin has to let the patch alone on his

head

> for

> > 7 days and even if he did wear the helmet the bandage would move

> under

> > the helmet and this would not work.If they put in the

> hospital

> > cut it open, and stitch it up, the wound would be bigger and

still

> not

> > heal.We got to the appointment at 8:45a.m.,did not see the Dr.

> until

> > 10:30a.m. and saw the Dr. for 15 minutes.I feel this was a waste

of

> my

> > time.I cannot believe there is absolutely nothing they can

do.What

> a

> > waste of me taking off work and not sending to school.I

told

> the

> > Dr. I was tired of dealing with the open sore but he did not

have

> > another answer. Now I do not know what to do. Cyndi B

> >

>

February 17, 2007

Hi Cyndi,

I am surprised that this dr didn't offer anything. I remember some type of

medicated foam that I had to cut and place under a bandage for my FIL. It helped

heal his wound beautifully. I also used some type of skin colored rubbery

bandage that helped protect his skin. I think there is more out there than this

guy offered. I would get another opinion or ask the ped to help. Some of our

nurses on the list may know what I am referring to.

Charlyne

mom to Zeb 14 DS/OCD/ASD?

wrote:

Today I took to a Wound Care Specialist about his the open wound

on his head. The doctor said that due to the fact hits his head

there is no " magic bullet " to help him heal faster.That since I just

got this helmet for we can only hope will wear it.It they

try to regrow the skin has to let the patch alone on his head for

7 days and even if he did wear the helmet the bandage would move under

the helmet and this would not work.If they put in the hospital

cut it open, and stitch it up, the wound would be bigger and still not

heal.We got to the appointment at 8:45a.m.,did not see the Dr. until

10:30a.m. and saw the Dr. for 15 minutes.I feel this was a waste of my

time.I cannot believe there is absolutely nothing they can do.What a

waste of me taking off work and not sending to school.I told the

Dr. I was tired of dealing with the open sore but he did not have

another answer. Now I do not know what to do. Cyndi B

February 17, 2007

I have to say that I was surprised by the doctor's reaction. Wonder if this

is another case of a doc not taking interest in a person with a

disability???? There are so many wonderful bandages of different kinds

available over the counter that even 2 years ago were pricey and available

only in the hospital.

I would suggest even a casual perusal of the local pharmacy section would

give you MANY possibilities for a healing dressing. I would look (and this

is not having seen the wound or watched it not heal) first at silvadene

impregnated dressing or a gel type dressing. If it is infected, try triple

antibiotic under the dressing VERY THINLY> Read the boxes - they have a

wealth of info on them. BTW - many of them are multi day dressings so you

don'thave to change them until they start to fall off. They would also

cushion the area.

If you have a friend who works in a nursing home, I would bet that person

could give you a huge amount of info about your son's wound (unofficially of

course). Doctors rarely actually treat wounds altho they may make

directions. Nurses do it and usually suggest to the doctor what works.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Re: Update on

>Date: Sat, 17 Feb 2007 18:58:33 -0800 (PST)

>

>Hi Cyndi,

> I am surprised that this dr didn't offer anything. I remember some type

>of medicated foam that I had to cut and place under a bandage for my FIL.

>It helped heal his wound beautifully. I also used some type of skin colored

>rubbery bandage that helped protect his skin. I think there is more out

>there than this guy offered. I would get another opinion or ask the ped to

>help. Some of our nurses on the list may know what I am referring to.

> Charlyne

> mom to Zeb 14 DS/OCD/ASD?

>

> wrote:

> Today I took to a Wound Care Specialist about his the open

>wound

>on his head. The doctor said that due to the fact hits his head

>there is no " magic bullet " to help him heal faster.That since I just

>got this helmet for we can only hope will wear it.It they

>try to regrow the skin has to let the patch alone on his head for

>7 days and even if he did wear the helmet the bandage would move under

>the helmet and this would not work.If they put in the hospital

>cut it open, and stitch it up, the wound would be bigger and still not

>heal.We got to the appointment at 8:45a.m.,did not see the Dr. until

>10:30a.m. and saw the Dr. for 15 minutes.I feel this was a waste of my

>time.I cannot believe there is absolutely nothing they can do.What a

>waste of me taking off work and not sending to school.I told the

>Dr. I was tired of dealing with the open sore but he did not have

>another answer. Now I do not know what to do. Cyndi B

>

February 18, 2007

Charylne, I am open to any help. But will not wear a bandage of

any kind.We tried and he pulled them off.We now have a helmet for

but he will not always wear it and so he removes it. I am at a

lost. Let me know if you come up with something . Cyndi B

> Hi Cyndi,

> I am surprised that this dr didn't offer anything. I remember

some type of medicated foam that I had to cut and place under a

bandage for my FIL. It helped heal his wound beautifully. I also

used some type of skin colored rubbery bandage that helped protect

his skin. I think there is more out there than this guy offered. I

would get another opinion or ask the ped to help. Some of our nurses

on the list may know what I am referring to.

> Charlyne

> mom to Zeb 14 DS/OCD/ASD?

>

> wrote:

> Today I took to a Wound Care Specialist about his

the open wound

> on his head. The doctor said that due to the fact hits his

head

> there is no " magic bullet " to help him heal faster.That since I

just

> got this helmet for we can only hope will wear it.It

they

> try to regrow the skin has to let the patch alone on his head

for

> 7 days and even if he did wear the helmet the bandage would move

under

> the helmet and this would not work.If they put in the

hospital

> cut it open, and stitch it up, the wound would be bigger and still

not

> heal.We got to the appointment at 8:45a.m.,did not see the Dr.

until

> 10:30a.m. and saw the Dr. for 15 minutes.I feel this was a waste

of my

> time.I cannot believe there is absolutely nothing they can do.What

a

> waste of me taking off work and not sending to school.I told

the

> Dr. I was tired of dealing with the open sore but he did not have

> another answer. Now I do not know what to do. Cyndi B

>

February 18, 2007

Sara, This Doc supposedly is used to dealing with disabled childen

and is a wound care specialist.Thats all I know. will not keep

a bandage on I have tried.The wound is a ulcer like people get in

nursing homes according to the Dr.He said just needs to wear

his helmet as much as possible.Well that in itself would be a

blessing. I am at a lost. Let me know if you think of anything else.

Thanks again Cyndi B

> I have to say that I was surprised by the doctor's reaction.

Wonder if this

> is another case of a doc not taking interest in a person with a

> disability???? There are so many wonderful bandages of different

kinds

> available over the counter that even 2 years ago were pricey and

available

> only in the hospital.

>

> I would suggest even a casual perusal of the local pharmacy

section would

> give you MANY possibilities for a healing dressing. I would look

(and this

> is not having seen the wound or watched it not heal) first at

silvadene

> impregnated dressing or a gel type dressing. If it is infected,

try triple

> antibiotic under the dressing VERY THINLY> Read the boxes - they

have a

> wealth of info on them. BTW - many of them are multi day dressings

so you

> don'thave to change them until they start to fall off. They would

also

> cushion the area.

>

> If you have a friend who works in a nursing home, I would bet that

person

> could give you a huge amount of info about your son's wound

(unofficially of

> course). Doctors rarely actually treat wounds altho they may make

> directions. Nurses do it and usually suggest to the doctor what

works.

>

> Sara - Choose to make lemonade, not complain about the lemons.

>

> >

> >Reply-To:

> >To:

> >Subject: Re: Update on

> >Date: Sat, 17 Feb 2007 18:58:33 -0800 (PST)

> >

> >Hi Cyndi,

> > I am surprised that this dr didn't offer anything. I remember

some type

> >of medicated foam that I had to cut and place under a bandage

for my FIL.

> >It helped heal his wound beautifully. I also used some type of

skin colored

> >rubbery bandage that helped protect his skin. I think there is

more out

> >there than this guy offered. I would get another opinion or ask

the ped to

> >help. Some of our nurses on the list may know what I am referring

to.

> > Charlyne

> > mom to Zeb 14 DS/OCD/ASD?

> >

> > wrote:

> > Today I took to a Wound Care Specialist about his

the open

> >wound

> >on his head. The doctor said that due to the fact hits his

head

> >there is no " magic bullet " to help him heal faster.That since I

just

> >got this helmet for we can only hope will wear it.It

they

> >try to regrow the skin has to let the patch alone on his

head for

> >7 days and even if he did wear the helmet the bandage would move

under

> >the helmet and this would not work.If they put in the

hospital

> >cut it open, and stitch it up, the wound would be bigger and

still not

> >heal.We got to the appointment at 8:45a.m.,did not see the Dr.

until

> >10:30a.m. and saw the Dr. for 15 minutes.I feel this was a waste

of my

> >time.I cannot believe there is absolutely nothing they can

do.What a

> >waste of me taking off work and not sending to school.I told

the

> >Dr. I was tired of dealing with the open sore but he did not have

> >another answer. Now I do not know what to do. Cyndi B

> >

February 19, 2007

i am surprised the skin people couldn't help you. There are many skin type

of products for wounds, and gels or cleaners to use on the wounds, usually the

product is based on the type of wound, we usually keep it moist to aid in

healing. The tan/skin colored padded adhesive may have been a Tielle dressing,

but they make many others too, it may depend on where you live too, there is

adaptic, replicare, duoderms, tagaderm, the list goes on and on. And then

there is the stuff for packing wounds too, but it sounds like you want to just

cover it. If it is showing great signs of infection we dont put a adheasive

on it, want to get the drainage out, we cleanse it several times a day with

normal saline or wound cleanser, a few still use peroxide, but that is pretty

rare as it can kill good skin cells too. apply a nonadherent dressing and wrap

with kling or kerlex, depending on what is available, often we may do wet to

dry dressing to help keep the wound bed moist and promote healing, the 4x4's

are saturated with normal saline over the wound and then wrapped. The head is

a difficult spot to dress, and if he wont wear a dressing as i really

understand your delemma here as nathan wont even wear a band-aid either. hmmm i

would speak to another wound specailist if is of no hlep seek another, even all

hospitals have a wound care team, or at least most of them, maybe some small

ones wont. Talk to them/ or the head nurse of the team, i feel us nurses

know many tricks or have better ideas as we work with the patients more.

replicare or duoderm they are kinds of gel /coushioned feeling and are

adhesive,

the tagaderm is like a clear thin band-aid or square piece of tape, adaptic is

pink on one side an white on the other, and is cushy, and comes in adherent

and nonadherent. Remember I can only offer names of stuff and explain things

we do at our hospital, I am not on the wound care team, or a wound specialist,

as i understand what different treatments do for the patient and staging of

wounds etc and how to do the treaments as ordered, I can not diagnose or tell

you what is best for the treatment of alex. Even our wound care team have to

get any ideas or specific oders--ok'd from the doctor, as a final decision.

Hope this info at least helps a little, hugs shawna,

P.S. what about splints for his arms so he cant bend at the elbows to remove

the bandage, I think all hospitals have them, ask surgery nurses maybe, as

nathan has a few of them from past surgeries, they are decorted neat for

kids, soccerballs or cars etc, and velcro on at the elbows, and are machine

washable. they came in especially handy after his eye surgeries. shawna

February 19, 2007

In a message dated 2/19/2007 8:17:55 P.M. Central Standard Time,

cynthiamiltonburns@... writes:

Why do

they want the scab off? How does the spot heal without a scab?

they want it to heal from the inside out, otherwise could form a pocket and

an abscess, which would be really bad!!!! , Another reason is something

about how dry skin/scabs change the skin cells, they want the fresh nice pink

skin cells to grow in. shawna

February 19, 2007

If this is an ulcer like nursing home patients have, then maybe

consideration of a very drastic (to me) change needs to be made. HAve you

considered elbow restrains to keep a dressing on?

I know that is drastic, but it is a thought.

Another is the very old fashioned but easy - the nuns when I was in nursing

school swore by it- granulated sugar sprinkled on the wound daily - and of

course washed off once a day before replacement of new sugar. They used one

packet (like you get with your coffee) per wound. This improved

granulation. I can't see where this would hurt at this point.

Again - non-medical opinion when all else has failed.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Re: Update on

>Date: Mon, 19 Feb 2007 06:51:01 -0000

>

>Sara, This Doc supposedly is used to dealing with disabled childen

>and is a wound care specialist.Thats all I know. will not keep

>a bandage on I have tried.The wound is a ulcer like people get in

>nursing homes according to the Dr.He said just needs to wear

>his helmet as much as possible.Well that in itself would be a

>blessing. I am at a lost. Let me know if you think of anything else.

>Thanks again Cyndi B

> > I have to say that I was surprised by the doctor's reaction.

>Wonder if this

> > is another case of a doc not taking interest in a person with a

> > disability???? There are so many wonderful bandages of different

>kinds

> > available over the counter that even 2 years ago were pricey and

>available

> > only in the hospital.

> >

> > I would suggest even a casual perusal of the local pharmacy

>section would

> > give you MANY possibilities for a healing dressing. I would look

>(and this

> > is not having seen the wound or watched it not heal) first at

>silvadene

> > impregnated dressing or a gel type dressing. If it is infected,

>try triple

> > antibiotic under the dressing VERY THINLY> Read the boxes - they

>have a

> > wealth of info on them. BTW - many of them are multi day dressings

>so you

> > don'thave to change them until they start to fall off. They would

>also

> > cushion the area.

> >

> > If you have a friend who works in a nursing home, I would bet that

>person

> > could give you a huge amount of info about your son's wound

>(unofficially of

> > course). Doctors rarely actually treat wounds altho they may make

> > directions. Nurses do it and usually suggest to the doctor what

>works.

> >

> > Sara - Choose to make lemonade, not complain about the lemons.

> >

> > >

> > >Reply-To:

> > >To:

> > >Subject: Re: Update on

> > >Date: Sat, 17 Feb 2007 18:58:33 -0800 (PST)

> > >

> > >Hi Cyndi,

> > > I am surprised that this dr didn't offer anything. I remember

>some type

> > >of medicated foam that I had to cut and place under a bandage

>for my FIL.

> > >It helped heal his wound beautifully. I also used some type of

>skin colored

> > >rubbery bandage that helped protect his skin. I think there is

>more out

> > >there than this guy offered. I would get another opinion or ask

>the ped to

> > >help. Some of our nurses on the list may know what I am referring

>to.

> > > Charlyne

> > > mom to Zeb 14 DS/OCD/ASD?

> > >

> > > wrote:

> > > Today I took to a Wound Care Specialist about his

>the open

> > >wound

> > >on his head. The doctor said that due to the fact hits his

>head

> > >there is no " magic bullet " to help him heal faster.That since I

>just

> > >got this helmet for we can only hope will wear it.It

>they

> > >try to regrow the skin has to let the patch alone on his

>head for

> > >7 days and even if he did wear the helmet the bandage would move

>under

> > >the helmet and this would not work.If they put in the

>hospital

> > >cut it open, and stitch it up, the wound would be bigger and

>still not

> > >heal.We got to the appointment at 8:45a.m.,did not see the Dr.

>until

> > >10:30a.m. and saw the Dr. for 15 minutes.I feel this was a waste

>of my

> > >time.I cannot believe there is absolutely nothing they can

>do.What a

> > >waste of me taking off work and not sending to school.I told

>the

> > >Dr. I was tired of dealing with the open sore but he did not have

> > >another answer. Now I do not know what to do. Cyndi B

> > >

February 19, 2007

Sara, I might have the elbow restraints.I will try. Today the ulcer

looked black/scab. I though this was good but in the book the Dr.

sent home it said to remove the scab. How do you know when the wound

has healed? Cyndi B

>

> If this is an ulcer like nursing home patients have, then maybe

> consideration of a very drastic (to me) change needs to be made.

HAve you

> considered elbow restrains to keep a dressing on?

>

> I know that is drastic, but it is a thought.

>

> Another is the very old fashioned but easy - the nuns when I was

in nursing

> school swore by it- granulated sugar sprinkled on the wound daily -

and of

> course washed off once a day before replacement of new sugar.

They used one

> packet (like you get with your coffee) per wound. This improved

> granulation. I can't see where this would hurt at this point.

>

> Again - non-medical opinion when all else has failed.

>

> Sara - Choose to make lemonade, not complain about the lemons.

>

> >

> >Reply-To:

> >To:

> >Subject: Re: Update on

> >Date: Mon, 19 Feb 2007 06:51:01 -0000

> >

> >Sara, This Doc supposedly is used to dealing with disabled childen

> >and is a wound care specialist.Thats all I know. will not

keep

> >a bandage on I have tried.The wound is a ulcer like people get in

> >nursing homes according to the Dr.He said just needs to wear

> >his helmet as much as possible.Well that in itself would be a

> >blessing. I am at a lost. Let me know if you think of anything

else.

> >Thanks again Cyndi B

> > > I have to say that I was surprised by the doctor's reaction.

> >Wonder if this

> > > is another case of a doc not taking interest in a person with a

> > > disability???? There are so many wonderful bandages of

different

> >kinds

> > > available over the counter that even 2 years ago were pricey

and

> >available

> > > only in the hospital.

> > >

> > > I would suggest even a casual perusal of the local pharmacy

> >section would

> > > give you MANY possibilities for a healing dressing. I would

look

> >(and this

> > > is not having seen the wound or watched it not heal) first at

> >silvadene

> > > impregnated dressing or a gel type dressing. If it is

infected,

> >try triple

> > > antibiotic under the dressing VERY THINLY> Read the boxes -

they

> >have a

> > > wealth of info on them. BTW - many of them are multi day

dressings

> >so you

> > > don'thave to change them until they start to fall off. They

would

> >also

> > > cushion the area.

> > >

> > > If you have a friend who works in a nursing home, I would bet

that

> >person

> > > could give you a huge amount of info about your son's wound

> >(unofficially of

> > > course). Doctors rarely actually treat wounds altho they may

make

> > > directions. Nurses do it and usually suggest to the doctor

what

> >works.

> > >

> > > Sara - Choose to make lemonade, not complain about the lemons.

> > >

> > > >From: charlyne olko <charlyne1121@>

> > > >Reply-To:

> > > >To:

> > > >Subject: Re: Update on

> > > >Date: Sat, 17 Feb 2007 18:58:33 -0800 (PST)

> > > >

> > > >Hi Cyndi,

> > > > I am surprised that this dr didn't offer anything. I

remember

> >some type

> > > >of medicated foam that I had to cut and place under a bandage

> >for my FIL.

> > > >It helped heal his wound beautifully. I also used some type of

> >skin colored

> > > >rubbery bandage that helped protect his skin. I think there is

> >more out

> > > >there than this guy offered. I would get another opinion or

ask

> >the ped to

> > > >help. Some of our nurses on the list may know what I am

referring

> >to.

> > > > Charlyne

> > > > mom to Zeb 14 DS/OCD/ASD?

> > > >

> > > > <cynthiamiltonburns@> wrote:

> > > > Today I took to a Wound Care Specialist about

his

> >the open

> > > >wound

> > > >on his head. The doctor said that due to the fact hits

his

> >head

> > > >there is no " magic bullet " to help him heal faster.That since

I

> >just

> > > >got this helmet for we can only hope will wear it.It

> >they

> > > >try to regrow the skin has to let the patch alone on his

> >head for

> > > >7 days and even if he did wear the helmet the bandage would

move

> >under

> > > >the helmet and this would not work.If they put in the

> >hospital

> > > >cut it open, and stitch it up, the wound would be bigger and

> >still not

> > > >heal.We got to the appointment at 8:45a.m.,did not see the Dr.

> >until

> > > >10:30a.m. and saw the Dr. for 15 minutes.I feel this was a

waste

> >of my

> > > >time.I cannot believe there is absolutely nothing they can

> >do.What a

> > > >waste of me taking off work and not sending to school.I

told

> >the

> > > >Dr. I was tired of dealing with the open sore but he did not

have

> > > >another answer. Now I do not know what to do. Cyndi B

> > > >

February 19, 2007

a, Thanks for the advice. When my daughter had to have styes

removed from her eyes they put the are restraints on her. i think I

still have them. spot today looks like it has a scab. Why do

they want the scab off? How does the spot heal without a scab? The

doctor gave me a mild foaming Isotonic ph buffered wound cleanser

called Constant Clens. Thanks for your help. Cyndi B

>

> i am surprised the skin people couldn't help you. There are many

skin type

> of products for wounds, and gels or cleaners to use on the wounds,

usually the

> product is based on the type of wound, we usually keep it moist to

aid in

> healing. The tan/skin colored padded adhesive may have been a

Tielle dressing,

> but they make many others too, it may depend on where you live

too, there is

> adaptic, replicare, duoderms, tagaderm, the list goes on and on.

And then

> there is the stuff for packing wounds too, but it sounds like you

want to just

> cover it. If it is showing great signs of infection we dont put a

adheasive

> on it, want to get the drainage out, we cleanse it several times a

day with

> normal saline or wound cleanser, a few still use peroxide, but

that is pretty

> rare as it can kill good skin cells too. apply a nonadherent

dressing and wrap

> with kling or kerlex, depending on what is available, often we may

do wet to

> dry dressing to help keep the wound bed moist and promote healing,

the 4x4's

> are saturated with normal saline over the wound and then wrapped.

The head is

> a difficult spot to dress, and if he wont wear a dressing as i

really

> understand your delemma here as nathan wont even wear a band-aid

either. hmmm i

> would speak to another wound specailist if is of no hlep seek

another, even all

> hospitals have a wound care team, or at least most of them, maybe

some small

> ones wont. Talk to them/ or the head nurse of the team, i feel us

nurses

> know many tricks or have better ideas as we work with the

patients more.

> replicare or duoderm they are kinds of gel /coushioned feeling

and are adhesive,

> the tagaderm is like a clear thin band-aid or square piece of

tape, adaptic is

> pink on one side an white on the other, and is cushy, and comes

in adherent

> and nonadherent. Remember I can only offer names of stuff and

explain things

> we do at our hospital, I am not on the wound care team, or a

wound specialist,

> as i understand what different treatments do for the patient and

staging of

> wounds etc and how to do the treaments as ordered, I can not

diagnose or tell

> you what is best for the treatment of alex. Even our wound care

team have to

> get any ideas or specific oders--ok'd from the doctor, as a final

decision.

> Hope this info at least helps a little, hugs shawna,

> P.S. what about splints for his arms so he cant bend at the elbows

to remove

> the bandage, I think all hospitals have them, ask surgery nurses

maybe, as

> nathan has a few of them from past surgeries, they are decorted

neat for

> kids, soccerballs or cars etc, and velcro on at the elbows, and

are machine

> washable. they came in especially handy after his eye surgeries.

shawna

>

February 20, 2007

its for alex not me or nathan, but thanks for your caring, its so nice here

everybody cares for another no matter what. hugs, shawna

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http://free.aol.com/thenewaol/index.adp. Most comprehensive set of free

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web, free AOL Mail and much more.

February 20, 2007

Cyndi, I think the arm splints are a great idea. They would be worth a try. I

knew our nurses on the list would be more helpful than this dr.

Charlyne

Mom to Zeb 14 DS/OCD/ASD?

wrote:

Charylne, I am open to any help. But will not wear a bandage of

any kind.We tried and he pulled them off.We now have a helmet for

but he will not always wear it and so he removes it. I am at a

lost. Let me know if you come up with something . Cyndi B

> Hi Cyndi,

> I am surprised that this dr didn't offer anything. I remember

some type of medicated foam that I had to cut and place under a

bandage for my FIL. It helped heal his wound beautifully. I also

used some type of skin colored rubbery bandage that helped protect

his skin. I think there is more out there than this guy offered. I

would get another opinion or ask the ped to help. Some of our nurses

on the list may know what I am referring to.

> Charlyne

> mom to Zeb 14 DS/OCD/ASD?

>

> wrote:

> Today I took to a Wound Care Specialist about his

the open wound

> on his head. The doctor said that due to the fact hits his

head

> there is no " magic bullet " to help him heal faster.That since I

just

> got this helmet for we can only hope will wear it.It

they

> try to regrow the skin has to let the patch alone on his head

for

> 7 days and even if he did wear the helmet the bandage would move

under

> the helmet and this would not work.If they put in the

hospital

> cut it open, and stitch it up, the wound would be bigger and still

not

> heal.We got to the appointment at 8:45a.m.,did not see the Dr.

until

> 10:30a.m. and saw the Dr. for 15 minutes.I feel this was a waste

of my

> time.I cannot believe there is absolutely nothing they can do.What

a

> waste of me taking off work and not sending to school.I told

the

> Dr. I was tired of dealing with the open sore but he did not have

> another answer. Now I do not know what to do. Cyndi B

>

February 20, 2007

<<they want it to heal from the inside out, otherwise could form a pocket and

an abscess, which would be really bad!!!! , Another reason is something

about how dry skin/scabs change the skin cells, they want the fresh nice pink

skin cells to grow in. shawna>>

My sympathies are with you a. We never had this specific issue to go thru

but I remember after jamie's second heart surgery at age 7.5 she developed a

serious infection in the scar area...all the stitches pooped out and pus kep

coming out. They put her in The ICU right away and had to come up every morning

and debride (scrape out) the entire wound in order to assure that it healed from

the inside out. We had to have a nurse come home with us too. It was soooooo

painful and they insisted she didn't need pain med. I was royally pissed. I hope

things improve for you soon.

Sherry

February 20, 2007

i found the cleansing spray that I LOVE to use. It is called CARRAKLENZ. I

love the no-pain and the no-rinse and encourages healing. Best buy site is

AmericaRX.com - 11.85 for 16 ounce bottle.

Sara - Choose to make lemonade, not complain about the lemons.

>From: sewshawna@...

>Reply-To:

>To:

>Subject: Re: Re: Update on

>Date: Tue, 20 Feb 2007 16:09:57 EST

>

>its for alex not me or nathan, but thanks for your caring, its so nice here

>everybody cares for another no matter what. hugs, shawna

> ************************************** Check out free AOL

>at

>http://free.aol.com/thenewaol/index.adp. Most comprehensive set of free

>safety and security tools, millions of free high-quality videos from across

>the

>web, free AOL Mail and much more.

>

October 8, 2007

Hi All, Well Thursday was a treat. We saw 2 specialists in Portland and are now being scheduled for an abdominal Ultrasound. this will determine in the Liver has done in damage to any other organs. Then we have lots of lab work.. After the ultrasound is completed and the information is back, we will then be scheduled for a Liver biopsy. the doctor is requesting copies of the slides from Dallas so they can compare to the new Biopsy. The report apparently was vague and they want another pathologist to look at it. On the good side, is finally making (-) antigens.... on the negative, he is now in a higher risk group for liver cancer. Does the fun never end???!!!??? Anyway, will keep you all posted as we learn more. One other interesting thing, the new GI did her Fellowship in Cincinnati with a Doctor who saw back in

'03 on a consult. The staff still remembers us... Not sure if that is good or bad.... Take care all.. Sandy Weber Mom to , , Barry, Aimee(92-03), Robbie, (98-00), , (ds) & (ds)(Identical Twins of triplets with Downs's)

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October 8, 2007

Amazing.......

I will keep your family in my prayers. Keep us posted.

-- Update on

Hi All,

Well Thursday was a treat. We saw 2 specialists in Portland and are now being scheduled for an abdominal Ultrasound. this will determine in the Liver has done in damage to any other organs. Then we have lots of lab work.. After the ultrasound is completed and the information is back, we will then be scheduled for a Liver biopsy.

the doctor is requesting copies of the slides from Dallas so they can compare to the new Biopsy. The report apparently was vague and they want another pathologist to look at it. On the good side, is finally making (-) antigens.... on the negative, he is now in a higher risk group for liver cancer. Does the fun never end???!!!???

Anyway, will keep you all posted as we learn more. One other interesting thing, the new GI did her Fellowship in Cincinnati with a Doctor who saw back in '03 on a consult. The staff still remembers us... Not sure if that is good or bad....

Take care all..

Sandy Weber

Mom to , , Barry, Aimee(92-03), Robbie, (98-00), , (ds) & (ds)(Identical Twins of triplets with Downs's)

Tonight's top picks. What will you watch tonight? Preview the hottest shows on Yahoo! TV.

October 8, 2007

My goodness Sandy!

I had no idea that was going through this. Life is just not fair!

You must be one amazing woman! What were 's initial symptoms? How

old are the triplets now? Do you get enough help to manage the house

and take care of everything? Sorry for the questions - I'm barely

treading water and to read about all of your children just amazes me how

you do it all and keep such a beautiful strong spirit.

Anyway - I will be saying daily prayers to help and the family with

this. Please let us know how things are going.

Regards,

Granata

Mom to Haley & Nikki, 5 yr identical twin girls, both w/DS, and , 3

1/2 yr son

Weber wrote:

> Hi All,

>

> Well Thursday was a treat. We saw 2 specialists in Portland and are

> now being scheduled for an abdominal Ultrasound. this will determine

> in the Liver has done in damage to any other organs. Then we have

> lots of lab work.. After the ultrasound is completed and the

> information is back, we will then be scheduled for a Liver biopsy.

>

> the doctor is requesting copies of the slides from Dallas so they can

> compare to the new Biopsy. The report apparently was vague and they

> want another pathologist to look at it. On the good side, is

> finally making (-) antigens.... on the negative, he is now in a higher

> risk group for liver cancer. Does the fun never end???!!!???

>

> Anyway, will keep you all posted as we learn more. One other

> interesting thing, the new GI did her Fellowship in Cincinnati with a

> Doctor who saw back in '03 on a consult. The staff still

> remembers us... Not sure if that is good or bad....

>

> Take care all..

>

> Sandy Weber

> *Mom* to *, , Barry, Aimee(92-03), Robbie,

> (98-00), , (ds) & (ds)*(Identical Twins of

> triplets with Downs's)

>

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

> Tonight's top picks. What will you watch tonight? Preview the hottest

> shows

>

<http://us.rd.yahoo.com/tv/mail/tagline/tonightspicks/evt=48220/*http://tv.yahoo\

..com/%20>

> on Yahoo! TV.

>

September 4, 2011

Good for you getting the kids in afterschool care in the same place! Ill still be running around again this year. Sounds like you've got a handle on the whole school thing, if not already, then imminently. (My kids haven't started school yet.) And, it sounds like your hands are crazy full. Keep your chin up. Those behaviors might not be permanant. Pick the most disruptive and address it (ABA therapies work wonders in addressing undesireable behaviors in children with DS -- see research by Dr. Kathleen Feeley and Dr. ). One day, one behavior at a time. I'm sure you and he'll do fine! Good luck!

MaggieMom to Olivia (01), & (IDs w/ DS, 05)www.walkonthehappyside.wordpress.com---

Subject: Update on To: Multiples-DS Date: Sunday, September 4, 2011, 11:33 AM

Sorry I haven't posted in so long. At lot has been going on with . He just started Kindergarten in a special ed non-inclusive classroom. Still not sure how I feel about it as I had hoped for inclusion for him. However, he is still pretty much non-verbal and so small for his age and a little unsteady on his feet that I was worried about him being trampled by the bigger kids. We'll see how it goes...Another change is that he is now at the same daycare as his brother and sister allowing me to only make on stop after work instead of going to 2 different daycares. He did have one accident where he pooped on the playground, so I send him to school in underwear then he arrives at the daycare in a pull-up. The problem we are having is that regular toilets are big for him and he is afraid of falling in. I put him on a little one at home. Also, only 2 stops for me in the morning before work now instead of 3!Everyone seems to love him at

the school and the daycare. A lot of the kids at the daycare help him, which makes me feel better. No one makes fun of him - luckily he is just too lovable.Another new issue with - I get him dressed in the morning, then he takes his clothes off and wants to pick out something else to wear. I had to put a lock on his closet door because he kept pulling all the clothes off the hangers and I got tired of putting them back in. Now he starts pulling things out of his drawers. He has gotten so particular about what he wears! He also seems to know every time I go into the bathroom and he follows me in. I might have to put a hook lock at the top of this door too.I met a woman who has a son with DS who is 12. It was interesting to find that he has a lot of the same behaviors as , including his "stimming noise" and what I call a "sitting strike" where he gets tired and sits down and won't move, so I have to carry him. Not

sure what I'll do when he is too big to carry!On top of all this, his twin brother is having issues at school where he is not listening to directions. He does the same thing at home.It's been quite busy here in the Blackwood house!No issues with big sis except getting her up early and getting her to do her homework. B., single mom to , 8 and and , 6 (DS, hydrocephalus)

September 4, 2011

Hi I have 4 children. Elisha 22 (DS), Karissa 20, Kelsey 18 and Mason soon to be

4 (DS). Yes Mason was a surprise.

I often wondered if Elisha would get made fun of. She does really great with

other kids. Children now a days know what it is to have DS. If they don't then I

educate them. One day Elisha ask me why she has to have DS or she had ask me

why she has a heart condition and a pacemaker. I just explain it to her and she

says ok then goes about her business.

Their is a website that has shirts about having DS. Elisha has one that says '

Down Syndrome Diva' that she is !

Now Mason started the IU last year. He is doing very well. He is not potty

trained yet but neither was Elisha at this age. They will become trained to do

so....on their own time. Just don't get frustrated. Mason learns a lot from just

being around his cousin who is 2. Good and bad. Being around the other children

they learn so much.

We have taught Mason sign language. The other kids think this is so cool. We

teach them what signs Mason is doing. I am amazed at how well he picks up on

this.

Having your child in a different class then the others is not bad for them at

all. I felt the same way as you do about this. Elisha has done very good with

this. A lot of her skills and training is at home.

We have to put locks on everything too. It teaches them. Then when the locks

come off they forget about it. They just need to learn where they can and cannot

be.

I hope this has helped you.

Caylor

Sent from my Verizon Wireless Phone

twinmom625 wrote:

>Sorry I haven't posted in so long. At lot has been going on with . He

just started Kindergarten in a special ed non-inclusive classroom. Still not

sure how I feel about it as I had hoped for inclusion for him. However, he is

still pretty much non-verbal and so small for his age and a little unsteady on

his feet that I was worried about him being trampled by the bigger kids. We'll

see how it goes...

>

>Another change is that he is now at the same daycare as his brother and sister

allowing me to only make on stop after work instead of going to 2 different

daycares. He did have one accident where he pooped on the playground, so I send

him to school in underwear then he arrives at the daycare in a pull-up. The

problem we are having is that regular toilets are big for him and he is afraid

of falling in. I put him on a little one at home. Also, only 2 stops for me in

the morning before work now instead of 3!

>

>Everyone seems to love him at the school and the daycare. A lot of the kids at

the daycare help him, which makes me feel better. No one makes fun of him -

luckily he is just too lovable.

>

>Another new issue with - I get him dressed in the morning, then he

takes his clothes off and wants to pick out something else to wear. I had to put

a lock on his closet door because he kept pulling all the clothes off the

hangers and I got tired of putting them back in. Now he starts pulling things

out of his drawers. He has gotten so particular about what he wears!

>

>He also seems to know every time I go into the bathroom and he follows me in. I

might have to put a hook lock at the top of this door too.

>

>I met a woman who has a son with DS who is 12. It was interesting to find that

he has a lot of the same behaviors as , including his " stimming noise "

and what I call a " sitting strike " where he gets tired and sits down and won't

move, so I have to carry him. Not sure what I'll do when he is too big to carry!

>

>On top of all this, his twin brother is having issues at school where he

is not listening to directions. He does the same thing at home.

>

>It's been quite busy here in the Blackwood house!

>

>No issues with big sis except getting her up early and getting her to

do her homework.

>

> B., single mom to , 8 and and , 6 (DS, hydrocephalus)

>

September 4, 2011

Hi . Just wanted you to know that you are not alone with the poo issues. My boys made huge gains in potty training the summer that they were

6, so when I sent them to school that fall, I was concerned about their toileting at school. Before school started I went into the school and spoke with both

his Special Education teacher and the nurse regarding their toileting schedule, rewards for dry pants and toileting, etc... Then I sent them to school in underwear.

Much to my surprise, the school staff did an excellent job maintaining the schedule. We did have some poo accidents, etc... but the boys were not

changed into pullups. Having accidents does not always mean that pullups are needed, but closer surveilance by an adult may be warranted. One boy even had

a problem with constipation and would "spot" his underwear quite frequently. I just sent lots of underwear and clothes. Then in Feb of 2010, when the boys were 7,

we finally got a handle on the constipation (mineral oil, lactulose and apple prune juice daily) and now

he poos every evening before bedtime, thus eliminating the pooing problems. Both boys now poo in the evening most every night.

As far as the fear of falling in... we used a very basic padding potty seat that fit onto the adult potty to make it more comfortable for them. Their feet

wouldn't touch the ground, but they wouldn't fall in either. I bought these padded seats for all of our bathrooms at home and for school too. Then as the

boys grew, we transitioned away from the padded seats.... Can't even remember when this transition occurred. My boys are still small and their feet

don't touch the ground when they sit on the adult potty, but they have adapted. This is a link to the product that worked for us:

www.walmart.com/ip/Mommys-Helper-Contoured-Potty-Seat/10088174

As far as the pullups go, I would only allow the school to use them if you agree. They shouldn't put him in pullups just to because it is easier for the

staff.

I hope this helps. Hang in there. I can't believe how far my guys have come in the past 2 years with potty training. It just all takes time.

a, Mom to and , identical twins with DS

Update on

Sorry I haven't posted in so long. At lot has been going on with . He just started Kindergarten in a special ed non-inclusive classroom. Still not sure how I feel about it as I had hoped for inclusion for him. However, he is still pretty much non-verbal and so small for his age and a little unsteady on his feet that I was worried about him being trampled by the bigger kids. We'll see how it goes...

Another change is that he is now at the same daycare as his brother and sister allowing me to only make on stop after work instead of going to 2 different daycares. He did have one accident where he pooped on the playground, so I send him to school in underwear then he arrives at the daycare in a pull-up. The problem we are having is that regular toilets are big for him and he is afraid of falling in. I put him on a little one at home. Also, only 2 stops for me in the morning before work now instead of 3!

Everyone seems to love him at the school and the daycare. A lot of the kids at the daycare help him, which makes me feel better. No one makes fun of him - luckily he is just too lovable.

Another new issue with - I get him dressed in the morning, then he takes his clothes off and wants to pick out something else to wear. I had to put a lock on his closet door because he kept pulling all the clothes off the hangers and I got tired of putting them back in. Now he starts pulling things out of his drawers. He has gotten so particular about what he wears!

He also seems to know every time I go into the bathroom and he follows me in. I might have to put a hook lock at the top of this door too.

I met a woman who has a son with DS who is 12. It was interesting to find that he has a lot of the same behaviors as , including his "stimming noise" and what I call a "sitting strike" where he gets tired and sits down and won't move, so I have to carry him. Not sure what I'll do when he is too big to carry!

On top of all this, his twin brother is having issues at school where he is not listening to directions. He does the same thing at home.

It's been quite busy here in the Blackwood house!

No issues with big sis except getting her up early and getting her to do her homework.

B., single mom to , 8 and and , 6 (DS, hydrocephalus)

September 4, 2011

Yup. We used that potty seat too. And at age 11, we still send a change of clothes to school just in case.