help!

January 23, 2001

Hi Margaret...

Thanks for your input. I would love to talk to Maureen. It's not that we

are in a hurry to get this done particularly. We are trying to work around

my husband's work schedule...he started a new job right before Thanksgiving

and they are sending him to some schools back East soon. He will be gone for

weeks at a time so we are trying to schedule the surgery when we know he will

be at home to help. Also, I would like to do the surgery before it gets warm

again...we live in California and I figure that will be even more

miserable during the hot weather in a cast! You are right... is

almost 14 and it's been a long time happening! I think that's one of the

things that bothers me so much.....I have been trying to get someone to look

at the way he walks for such a long time and been getting the brush off. I

am sure that, in the scheme of things, taking into account his other medical

problems, etc., it wasn't much of a priority to the docs. BUT, it would

have been alot easier on him and us if this had been done when he was younger

and smaller! What a mess!

Terry

January 23, 2001

Hi Carole,

You know, you just verbalized one of my worst fears! The doctor asked us

yesterday if has been in pain...I told him I don't know because he

doesn't react to pain like you would expect. BUT....I also told him that we

have been medicating the heck out of this kid...he's currently on two

anti-psychotics...and I have to wonder if at least part of the problem has

been pain?!? I could just puke! I guess I would be pretty " psychotic "

too if I was in pain and nobody understood!

Thanks for your input. It just makes me that much surer that it's what we

need to do for him. To answer your question, I know that a lot of Down's

kids have really " loose " muscle tone...I always thought that was what they

were talking about with the hip problems. This is a congenital malformation

of the bone and pelvis...the other one is abnormal as well, but not to the

same extreme. I don't think this is necessarily a " Down's " trait...I'll try

to remember to ask the doc. You're right...I'm scared to death!

Terry

January 23, 2001

Hi Gail...

Sorry, I guess I got your's and Carole's posts jumbled up....it's been that

kind of day! LOL !!! sigh! Thanks to both of you for your prayers and

support!

Terry

January 23, 2001

Thanks for the support, Leah. I really appreciate it. I think I had

told you before that I was worried that " might " need to have

a cast following surgery....I guess I just didn't really consider the

practical ramifications if he did. What a drag! I wouldn't wish

this on anyone, but at the same time I'm hoping that someone has had

some experience with it and some suggestions. I know I can get

bigger diapers...he wears medium now, but that doesn't solve the

problem of inside the cast. isn't potty-trained...just

starting sort of. I don't know if I will be able to " sit " on a

commode chair, for instance, or not. Right now, I sit him on the

toilet and flush...he goes! Take him out of that environment and he

won't understand what I want him to do. I was thinking maybe of

trying something like a Poise pad against his skin and a diaper over

that...thinking that maybe that would absorb the liquid and draw it

into the diaper? Maybe? Of course, pooping is a whole other

problem! Because has bigtime problems in that area, his

stools are soft and not formed....lots of laxatives. I can't even

imagine how to deal with that...I can only hope (and pray) that I can

catch him before he goes....

I need to write up a list of our questions and put in a call to the

doctor with regard to positioning, etc. I know from talking to him

yesterday that he has little or no experience dealing with kids with

developmental challenges and no idea of how this is going to impact

's life. He's thinking from a surgeon's point of view...this

is wrong...fix it and it will be ok! Would that it were so! LOL!

Thanks,

Terry

January 23, 2001

We haven't gone through hip surgery, but we did go through knee surgery.

Trisha has problems with her hips as well but after the knee surgery the hips

seem to have gotten better. Trisha was in Hospital for 3 days, then she was

non=weight bearing for about 4 weeks and then she had wheelchair for another

2-3 weeks. She was in a lot of pain the first couple of days but by the time

she came home the pain has lessened and she only had to take her pain

medicine a few more days after that. The worst part was right after surgery

and the next day, her leg was elavated with ice packs and she would cry if

you even touched it, changing the bandages was hard for her at first but even

that got easier after about the 3rd day. By the 5th day she had learned how

to gain as much sympathy as possible and was eating up the attention. The

rest of the time was a little hard on us, (we had to pick her up and carry

her upstairs etc.) but she seemed to adjust very well and when it came time

for her to give up the wheelchair we actually had to ween her away from it,

because she wasn't letting go of it to easy. She liked sitting in it to

watch t.v. Even now when she sees a wheelchair she thinks she should be able

to ride in it. They had to remove her knee cap then put it back and take the

tendons and muscles and cross over the cap to hold it in place. We've been

told that eventually she will have to have the surgery on the other knee as

well, but so far it hasn't gotten as bad as the right leg did. I don't know

if this helps or not but believe me, they recuperate much faster than we do

as parents. :-)

Carol

January 23, 2001

In a message dated 1/23/01 1:40:44 PM Pacific Standard Time,

Csvillars@... writes:

> , they recuperate much faster than we do

> as parents. :-)

>

> I believe that Carol! I have had one heck of a headache since yesterday!

> LOL Thanks for the info. has been through multiple GI surgeries.

> The difference was that, in those, he recuperated at his own pace...I mean

> the only stopping him from doing anything was how bad he wanted to do it.

> This time, he won't be able to move even if he wants to because of the

> cast. Last year he broke his foot and was in a cast for about 4 weeks. It

> wasn't really a " walking cast " but he made it work and after the first

> couple of days, he was hobbling whereever he wanted to go. I'm still

> waiting for the doc to call me so I can find out exactly what to expect

> with regard to the cast. If he can cast him in a " sitting " position, I

> think will do better. At least he will be able to go for walks

> outside in a wheelchair, etc. If he casts him prone, I don't know how we

> will move him around. Figures, the guy will take his time calling me back!

> grrrrr!

>

January 23, 2001

He also said that there is a problem

> with his hip. He referred us to an Orthopedic Surgeon in LA. We

saw

> him today and he says that 's femur (leg bone) is malformed

> and so is his pelvic bone that forms his hip joint. He says that

> it " probably " causes pain and that it will only get worse

to

> the point where it will dislocate completely. He scheduled

> for hip surgery on January 31 (in 8 days, yikes!). He said that

> will be in the hospital for three days and in a 1/2 body

cast

> for 6 weeks! I desperately need some input here....anybody had any

> experience with this?

> Terry

> Mom to , almost 14

Hi, Everyone..........Terry.......I think you need to talk to

Maureen. Her daughter, , had hip surgery last spring. I

wouldn't rush into it too quickly until you get all your answers to

what concerns you. is 14.....it's not like this happened

overnight. I will call Maureen and tell her your

problem......perhaps she will get on line.

Joan.....somehow I have been deleted from the digest. Haven't gotten

it for 3 days. Do you take care of that or onelist.com?

Take care, Everyone

Margaret

January 23, 2001

if they cast him prone, then ask about a special chair that reclines. Then

he can still go for walks. I don't know what the special chairs are called

but I have seen them.

Carol

January 23, 2001

Terry,

I'll be praying for your family untill is out of the hospitlal. I

kindof have the experience of a body cast, I have scholious so for years I

had to sleep in a back brace, to not have rods put in my back. Well It's

kindof the same as a body cast, so if you have any questions please feel

free to ask.

>

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January 23, 2001

terry,

you might want to call a pediatric hospice or pediatric home health agency.

they for sure would be able to help you out on ideas and strategies since

that is most of their clientale.....or better yet call the nursing director

of the local pediatric ward at a hospital..she or he might offer some

answers...i have found never to ask the surgeons for ideas, they are

clueless...but rather find a person who is directly related to the

situation.....example, ashtons ear....ent was clueless about swimming and

soon...but her special olympics swim coach new what to do and how to protect

her ears.,......again much strength and patience coming your way along with

prayers....take care,leah

>

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January 23, 2001

Thanks Carole..I just talked to the doc and found out they will cast him

sitting up. I never knew there was such a thing as a wheelchair that

reclines! You guys are such a great resource!

Terry

January 23, 2001

He also said that there is a problem

> with his hip. He referred us to an Orthopedic Surgeon in LA. We

saw

> him today and he says that 's femur (leg bone) is malformed

> and so is his pelvic bone that forms his hip joint. He says that

> it " probably " causes pain and that it will only get worse

to

> the point where it will dislocate completely. He scheduled

> for hip surgery on January 31 (in 8 days, yikes!). He said that

> will be in the hospital for three days and in a 1/2 body

cast

> for 6 weeks!

Terry,

Gosh, what upsetting news. Is this the problem that a lot of downs

kids have, or is this a problem? I have heard our kids are

very prone to having hip problems, but didn't know how bad of

problems they could be. :-( I have no knowledge to share, but I

have prayers and well wishes for you and . I can't imagine

how scared you must be.

Gail

January 23, 2001

--- leah

Hi Terry, I don t have any help to offer but wanted to

let you know you and your family are in my prayers.I

also am facing hip surgery for the third time so i

think has very likely been in pain with this

but did not have the means to tell you.I complain all

the time ,take tylenol,and use tubs of bengay , and

walk with a cane . Maybe what was seen as aggression

was just pain and frustration,poor kid.I hope the next

two months go by really fast for all of you .Will you

get nurses aide care when he comes home ?? Carole

leah <okieleah@...> wrote:

> terry,

> prayers and hugs to you!!! i cant imagine the

> thoughts that are going thru

> your head!!!! i have never experienced this and

> hope i dont have too....but

> i think one of the other list members daughters was

> in body cast, jamie

> maybe???? i am not sure, i think shes a girl...my

> memory is bad..... goes

> along with the gray hair, sagging boobs, and

> wrinkled eyebrows..... :-) i do

> know that when my cousin got hit by a car and was in

> a body cast, they left

> a whole down there and her mom just used big diapers

> and wiped her

> constantly.... goodluck and please know you and

> matthew are in our

> prayers......leah

>

> >From: " Terry Madden " <Imaddenmom@...>

> >Reply-egroups

> >egroups

> >Subject: HELP!

> >Date: Tue, 23 Jan 2001 06:40:53 -0000

> >

> >Hi all....

> >A few months ago I mentioned that we were concerned

> about 's

> >feet...they are flat and he walks on the inside of

> his ankles. Since

> >then, we saw an Orthopedic doc who took some x-rays

> of his feet and

> >his hips. He told us that 's feet " are

> flat " (duh!) and that

> >he will prescribe orthotics. He also said that

> there is a problem

> >with his hip. He referred us to an Orthopedic

> Surgeon in LA. We saw

> >him today and he says that 's femur (leg

> bone) is malformed

> >and so is his pelvic bone that forms his hip joint.

> He says that

> >it " probably " causes pain and that it will

> only get worse to

> >the point where it will dislocate completely. He

> scheduled

> >for hip surgery on January 31 (in 8 days, yikes!).

> He said that

> > will be in the hospital for three days and

> in a 1/2 body cast

> >for 6 weeks! I desperately need some input

> here....anybody had any

> >experience with this? I can't imagine how we will

> deal with

> >incontinence issues, etc. in the cast. I asked him

> about it and he

> >said, " you will just have to figure that it will be

> a dirty cast and

> >be obsessive-compulsive about cleaning it! " What,

> is he kidding? Of

> >course, now that we are home, dh and I have 100

> questions that we

> >wish we had asked the doc... weighs almost

> 90 pounds without a

> >cast. I can't imagine how we will move him from

> point A to point B,

> >much less get him in and out of the car? I wonder

> if the cast will

> >have him sitting up or lying down? won't

> understand what's

> >happening to him...I am so afraid that he will lose

> what progress he

> >has made lately...I am so completely overwhelmed by

> this..I feel like

> >I could just scream! We welcome any and all

> suggestions as to how we

> >can cope with this.

> >Terry

> >Mom to , almost 14

> >

>

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> http://explorer.msn.com

>

=====

Carole, wife of Rich, mom to and , m-i-l to and ,

grandmom to ,8 ,with d.s.and a.s.d. and 6 with adhd and possible

a.s.d.and Logan 2 year old wild child, and Seth 7months old and better known as

the gerber baby!

In the hour of adversity be not without hope for crystal

rain falls from the black clouds

Persian poem

__________________________________________________

January 23, 2001

Your welcome, anytime Terry.

>

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January 23, 2001

I've heard that hip problems do go with Down Syndrome. When we got here, they

did an exam on him (we were becoming dependants again after remarrying). They

also said there's a common defect of the vertebre in the neck. He had to be

cleared on both before they would allow him to participate in PE at school.

Wife to Dewight

Mom to , 10 yrs, DS, PDD-NOS and celiac

and , 19 months and strong-willed

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January 24, 2001

In a message dated 1/23/01 3:00:03 PM Eastern Standard Time,

smilinggail@... writes:

<< He also said that there is a problem

> with his hip. He referred us to an Orthopedic Surgeon in LA. We

saw

> him today and he says that 's femur (leg bone) is malformed

> and so is his pelvic bone that forms his hip joint. He says that

> it " probably " causes pain and that it will only get worse

to

> the point where it will dislocate completely. He scheduled

> for hip surgery on January 31 (in 8 days, yikes!). He said that

> will be in the hospital for three days and in a 1/2 body

cast

> for 6 weeks! >>

Oh Gosh Terry. I'm sorry. {{{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}} I will

be hoping and praying that it all goes well and this is all over soon. You

KNOW we'll all be here to hold your hand-----cyberly, that is!!!!

Donna

January 24, 2001

Thanks Donna...it's amazing how quickly the people in this list can become

such an important part of our support system! Everyone's concern, prayers,

and input means so much!!

Terry

January 24, 2001

HI Terry,

My only experience with this was on the nursing side of things; years ago I

worked on Peds and took care of alot of kids with hip spica casts (most had

cerebral palsy); some were good size children; we were able to flip them

front to back with just 2 of us usually. As far as the incontinence thing,

we tucked depends or diapers under their bums (there was a good size cut-out

in the cast around the perineal area), or tucked a urinal in place. For the

most part, the casts stayed pretty dry. I'm sure the medical profession

probably has some more current ways of dealing with these problems, and

perhaps talking to the nurses on the pediatric ward where would be a

patient would be as or more beneficial than the doctor (they usually don't

concern themselves with the day-to-day concerns that most parents had). We

would also roll the bed to face the TV, and put bars over the top with a

trapeze, so the pt could grab and help reposition themselves. The very

toughest part was the arrangements to physically get the child home at

times. Perhaps, if you could visit a child on that unit to see how it's

working out, then you could see how you would have to modify those things

for , at home and in the hospital. Best of luck...I always enjoy

your posts, Terry.

Jackie, mother of now 7 year old Christian

>From: " Terry Madden " <Imaddenmom@...>

>Reply-egroups

>egroups

>Subject: HELP!

>Date: Tue, 23 Jan 2001 06:40:53 -0000

>

>....

>A few months ago I mentioned that we were concerned about 's

>feet...they are flat and he walks on the inside of his ankles. Since

>then, we saw an Orthopedic doc who took some x-rays of his feet and

>his hips. He tolHi alld us that 's feet " are flat " (duh!) and that

>he will prescribe orthotics. He also said that there is a problem

>with his hip. He referred us to an Orthopedic Surgeon in LA. We saw

>him today and he says that 's femur (leg bone) is malformed

>and so is his pelvic bone that forms his hip joint. He says that

>it " probably " causes pain and that it will only get worse to

>the point where it will dislocate completely. He scheduled

>for hip surgery on January 31 (in 8 days, yikes!). He said that

> will be in the hospital for three days and in a 1/2 body cast

>for 6 weeks! I desperately need some input here....anybody had any

>experience with this? I can't imagine how we will deal with

>incontinence issues, etc. in the cast. I asked him about it and he

>said, " you will just have to figure that it will be a dirty cast and

>be obsessive-compulsive about cleaning it! " What, is he kidding? Of

>course, now that we are home, dh and I have 100 questions that we

>wish we had asked the doc... weighs almost 90 pounds without a

>cast. I can't imagine how we will move him from point A to point B,

>much less get him in and out of the car? I wonder if the cast will

>have him sitting up or lying down? won't understand what's

>happening to him...I am so afraid that he will lose what progress he

>has made lately...I am so completely overwhelmed by this..I feel like

>I could just scream! We welcome any and all suggestions as to how we

>can cope with this.

>Terry

>Mom to , almost 14

>

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January 24, 2001

Poor matthew, and poor you, terry, i will pray for you guys, it sounds like

a brain stumper to me all I can add is maybe ask for 6week supply of

sedatives to keep him mellow as can be, and i dont know about the bowels but

for urine, if matthew will leave alone maybe a texas cath, its like a condom

shape cath goes over the penis, but if incontinent of urine this will

collect in bag for you to empty. Its safe, no infection or invasive

procedures for it just slips over on the outside. Also, this will be one of

those casts that can get wet right? I think I would demand it if possible.

shawna.

>From: " Terry Madden " <Imaddenmom@...>

>Reply-egroups

>egroups

>Subject: HELP!

>Date: Tue, 23 Jan 2001 06:40:53 -0000

>

>Hi all....

>A few months ago I mentioned that we were concerned about 's

>feet...they are flat and he walks on the inside of his ankles. Since

>then, we saw an Orthopedic doc who took some x-rays of his feet and

>his hips. He told us that 's feet " are flat " (duh!) and that