Re: Sedation

[Guest guest]

Becki,

My daughter, Alli, is the Queen of blood draws and IV's. About 3 years ago

she had a port-a-cath put permentaly in her chest. She has all IV work done

through this. I won't go into this in detail except to say that it has been

our saving grace!

EMLA also caused skin irritation on Alli. She is allergic to all adhesives

and tape. A home health nurse brought a little box of miracles one day

although! EMLA in a patch form. It caused no problems for her and you do not

have to do all the saran wrap. We asked for a prescription specifying the

EMLA patch and it was ordered for her. We love it!

Amy & Alli

[Guest guest]

Becki,

The one thing that I have found in 18+ years of parenting is that my children

tend to take their clues from me. In your situation, I would explain to

that he is going to have a needle stick, but that the sedation will make him

not feel/aware of it. If you help him to be brave, he will be. A strong

reminder of the good that will come of it can't hurt either. Give him credit

for his strength. Because he is strong remember. Lots of prayer and touching

is also important. Good luck Becki, as always your mothering skills will come

through for you.

Christy (Abbie, 13 systemic)

[Guest guest]

Hi Becki,

I wish I had a good answer for you. Robbie had lots of IV's when hospitalized

before - and that seems to be what has stuck in his mind - that and the daily

blood draws while in the hospital. When I found out about the EMLA it was after

his second JRA hospitalization & I was furious they hadn't offered it before.

It is a shame that it irritates 's skin. Robbie has never complained of

any burning - but his skin does get red sometimes from it. He knows that he's

having blood drawn when we use it - but he also knows that it won't hurt - so

his is perfectly calm with it. I always use saran wrap on his arm because the

little bandages they provided with the cream irritate Robbies skin (the tape

part).

I would think that the sedation would help keep calm enough to deal with

it - but I don't know. It will probably be worse on you than him - with the

anticipation. I sure did write a lot without providing any help - sorry. Know

that my thoughts are with you!

Val

Rob's Mom (4,systemic)

In a message dated Mon, 15 Jul 2002 2:09:54 PM Eastern Standard Time,

alarson1@... writes:

>

>

> Hi gang,

> I am pondering over something and could use some advise or personal

experiance. will be given an IV Thursday for his injection.Before they do

it they are supposed to give a sedative.They told me I could EMLA both

hands and his one arm.The problem is HATES EMLA,he starts crying

immediatelly and says it burns.If I did this to him he would also know something

to do with needles was going to happen,especially if both hands and one elbow is

wraped in saran wrap.Im afraid he would freak totally out.Has anyones child used

the sedative alone and were they somewhat calm when the IV was stuck in.I had my

tonsils out when I was 15 or 16 and was sedated first.I felt good and was

totally relaxed when they stuck me,but s 3yrs old.Ive heard that Vanderbilt

is a no shot hospital,which just means that they are loopy before the IV goes in

and never know it was done,then if you have to stay everything is drawn out or

put in through the IV.I am beating myself up over what would be wor se.

freaking out about the EMLA for a couple of hours or just getting it over with

and freaking out right before its done.I havent talked to about this and I

dont think I am going to,but I do need to let him know that when he gets home he

has to stay off his feat until Sat.Ive got to find a way to let him know whats

going on without telling him too much.I keep looking at his little hands and

that tiny little vein in his arm.If they hurt his arm he has nothing else to

draw blood from.Some of you are nurses,should I tell them they cant do his arm?I

got really sick as a teen and they drew so much blood that it collapsed or

something,with just one stick.So now all I have are tiny little things that a

butterfly needle can barely get.Sorry to be so long.Getting a little nervous as

Thursday gets closer.

> Becki and 3systemic

>

>

>

[Guest guest]

Dear Becki,

Our six year old also freaks out when I put emla on him, as he knows a shot is

coming. He get a shot for his mtx and bloodwork and the remicade IV, so he gets

lots of shots. I found that it was more stressful to put on the emla and the

saran wrap and have him cry and ask me every three minutes if it was time for

his shot. He does better if I tell him as close as possible to actually getting

the shot, like five minutes if I can do it, and then just going ahead and doing

it. It might sound cruel, but for my son, it works the best. The anxiety of

knowing a shot is coming, is just too much for him. Good luck on thursday.

and Ezra (systemic age 6)

Allan Larson wrote:

> Hi gang,

> I am pondering over something and could use some advise or personal

experiance. will be given an IV Thursday for his injection.Before they do

it they are supposed to give a sedative.They told me I could EMLA both

hands and his one arm.The problem is HATES EMLA,he starts crying

immediatelly and says it burns.If I did this to him he would also know something

to do with needles was going to happen,especially if both hands and one elbow is

wraped in saran wrap.Im afraid he would freak totally out.Has anyones child used

the sedative alone and were they somewhat calm when the IV was stuck in.I had my

tonsils out when I was 15 or 16 and was sedated first.I felt good and was

totally relaxed when they stuck me,but s 3yrs old.Ive heard that Vanderbilt

is a no shot hospital,which just means that they are loopy before the IV goes in

and never know it was done,then if you have to stay everything is drawn out or

put in through the IV.I am beating myself up over what would be worse.

freaking out about the EMLA for a couple of hours or just getting it over with

and freaking out right before its done.I havent talked to about this and I

dont think I am going to,but I do need to let him know that when he gets home he

has to stay off his feat until Sat.Ive got to find a way to let him know whats

going on without telling him too much.I keep looking at his little hands and

that tiny little vein in his arm.If they hurt his arm he has nothing else to

draw blood from.Some of you are nurses,should I tell them they cant do his arm?I

got really sick as a teen and they drew so much blood that it collapsed or

something,with just one stick.So now all I have are tiny little things that a

butterfly needle can barely get.Sorry to be so long.Getting a little nervous as

Thursday gets closer.

> Becki and 3systemic

>

>

[Guest guest]

Hi Becki and everyone,

about needles and fears... do you have to buy EMLA and AMETOP creme

yourself? I'm asking because with us the hospital provides it. We

also try to use inhalation anesthetic with children who are very

afraid. Also if the child for any reason has anesthesia, all the

uncomfortable things are done during the sleep (blood work, MRI,

joint injections). Of course it's impossible to put them to sleep

every time we need a blood work done.

My own son Juho (7, pauci extended) was terrified of blood tests and

anything to do with needles. He ranted and raved, and the first times

it was like a nightmare. He didn't give a ****** about EMLA and me

trying to tell him it would help him. But eventually he got use to

it. We use AMETOP with him now because he is allergic to EMLA. Could

that be the case with too if he says it burns him? We also had

some help of changing the needles (with bloodwork) to

little " butterfly " ones which are commonly used with premature babies

(they don't hurt that much).

I hope that will have some less horrible experiences when

getting bigger.

Soili

[Guest guest]

Hi Soili,

Im the one thats nervous,although I will have it together Thursday

morning. labs are always done with a butterfly,and he does great.No

screaming or tears and he always gets excited when its over and tells

everyone how big he is.I wont know what kind of sedation will get

until Thursday morning a person called a Child Life Specialist will come in

and explain everything.Soili,s consult with the Ortho was soo cute.I

was telling him how the rheumy said this would be hard and he would have to

use ultrasound to do s ankle.He turned around and looked at me with

this puzzled look,and laughed and said ankles are a piece of cake,it will

only take a few minuites.Our rheumys here in the states need to get with the

program.This could have been done months ago,if the rheumy had known that

this was no biggie.The important thing is that its being done.Now as long as

Arthur doesnt decide to play in one of his old stomping

grounds,knees,wrists,neck,jaw,elbows,and the rght ankle, should do

great.Have you ever seen a poly or systemic child go from many joints to

just one that the oral meds cant control?As always thanks for your imput,it

means alot.Another thing since you are a PT,the ortho gave a boot to

wear,looks like a walking cast.He cant move is ankle at all and hes supposed

to wear it when he has pain. didnt want any part of it at the time so

they couldnt tell if it fit properly.I think its to small,It will start out

with a tiny amount of room from his toe to the end of the boot,after a few

minuites in it, his toes come over the edge.Shouldnt this thing be big

enough to allow for some growth?We arent talking about a sprain and only

need it for a little while,this is something that may be needed every now

and then every week.I just think it should fit as long as a pair a shoes

every 3-4 months at least.You know how fast kids grow.Im taking the thing

with me so they can see how much bigger his shoe is compared to the

boot.Thanks again!

Becki and 3systemic

Re: sedation

>Hi Becki and everyone,

>about needles and fears... do you have to buy EMLA and AMETOP creme

>yourself? I'm asking because with us the hospital provides it. We

>also try to use inhalation anesthetic with children who are very

>afraid. Also if the child for any reason has anesthesia, all the

>uncomfortable things are done during the sleep (blood work, MRI,

>joint injections). Of course it's impossible to put them to sleep

>every time we need a blood work done.

>My own son Juho (7, pauci extended) was terrified of blood tests and

>anything to do with needles. He ranted and raved, and the first times

>it was like a nightmare. He didn't give a ****** about EMLA and me

>trying to tell him it would help him. But eventually he got use to

>it. We use AMETOP with him now because he is allergic to EMLA. Could

>that be the case with too if he says it burns him? We also had

>some help of changing the needles (with bloodwork) to

>little " butterfly " ones which are commonly used with premature babies

>(they don't hurt that much).

>I hope that will have some less horrible experiences when

>getting bigger.

>Soili

>

>

>

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[Guest guest]

Hi ,

Val here, what a great message for Becki, it made me feel better too about

(and about Robbie and he isn't even having a procedure). Robbie had surgery at

5 months - and it was awful having the anesthesiologist carry him to the OR (he

took him in his arms instead of in a crib/gurney - which was kind of nice)but

awful to have Robbie carried away from me. I felt so helpless. He did great

after - but they recovered him in the NICU - which was a little unnerving for me

since he spent so long there when he was born - but he did so well that I

completely forget he had the surgery!

Val

Rob's Mom (4,systemic)

In a message dated Wed, 17 Jul 2002 6:19:10 AM Eastern Standard Time,

tulsawalkerfamily@... writes:

>

>

> Dear Becki, I thought I might share our experience with a hip aspiration, done

in the hospital, early April. Maybe will help ease your anxiety a little bit.

Our son is older than , 9 1/2. A group of employees at my husband's office

put together a " goodie " bag for Ian. It had a deck of cards, a magic card

deck, a small board game, UNO, a small follow the leader type game (obviously

someone had experience having a child in out-patient surgery before as I had not

given it a thought!). Anyway maybe you could put together something similar for

? New coloring book, books, stickers, etc. This came in so handy as we

are told to arrive at 8 a.m. for a 10 a.m. procedure which actually did not take

place until around 11 a.m.

>

> We checked in and were shown to our pre-op room which was decorated with kid

friendly wallpaper, rocking chair, t.v. and I think even a vcr (perhaps you

could bring a favorite video from home?). They had Ian put on the gown, took

his vital signs, went over his medications and had me initial the hip that was

to be treated. Seems like they did rub his hand with the numbing cream before

inserting the IV needle (they did not actually hook up the IV until he was in

the operating room).

> This did not cause any trauma - but Ian does have a high tolerance to pain.

Then we waited - the new games were a life saver!

>

> Around 10:30 or so the nurse came in with a little cup of medication (a very

small amount) for him to drink. It was a sedative that was meant to relax him,

take away the anxiety. We kept playing and just 10 minutes later she came back

asking if he felt sleepy - no he said. She advised he get back into bed as the

medication takes effect very quickly. Sure enough, he was barely settled into

bed when he got very sleepy! Not long after she wheeled him into the OR. I

hadn't quite prepared myself mentally for that moment but my husband and I put

on smiles and blew him kisses. We had talked to him before hand that he would

be taken into the OR and that we couldn't come in with him but that when he woke

up, we would be right there. We tried to make it an adventure; an upbeat

experience; keeping calm and reassuring. will be in tune to your

feeling/actions so try to be as relaxed as possible. Ian remembers talking to

the nurse and the gas mask being placed on (they used bubble gum flavored gas to

put him to sleep) and that is about it!

>

> We were taken to the large out-patient surgery waiting room. Within 30

minutes or so the orthopedic surgeon was on the phone with us letting us know

how things had gone (they had told us it would not take very long). He told us

Ian was fine and being taken to recovery. He could only get " a little bit " of

fluid out and had injected the steroid. While Ian was knocked out the

orthopedist checked his range of motion and said was good - no damage to the

joint.

>

> Shortly after receiving that call, we were called again to come to the

recovery area. This we were NOT prepared for. They want parents there to have

a calming effect for their children as they come out from under. Ian was

restless, trying to pull out the IV, moaning, crying out - very incoherent.

Which now makes sense but at the time it was very unnerving for us!!

> There were 3 babies in there at the same time, separated only by curtains and

they were crying. We thought Ian must be in terrific pain but the nurse assured

us that his behavior was normal and that he wouldn't remember it (he doesn't).

We talked quietly to him and tried to soothe him. They kept him there for

around 30 minutes, monitoring him and did give him a Popsicle but he wasn't too

interested.

>

> We were taken back to the pre-op room (a different one than we had before).

He was still really out of it but not thrashing about; he slept peacefully for

nearly 3 hours!! Time to go home even though he still was " woozy " . We live

less than a mile from the hospital and as we pulled into the drive he got sick.

I thought we were past his " nausea stage " so be prepared with a bag or something

for the ride home. That was the only time he got sick. Slept for most of the

rest of the day and night. Got up feeling great the next day and since we had

not been told to stay off his feet, he went to school.

> (I'm still angry about not being told to rest for a couple of days!)

>

> He was like a different child; he felt so good and told us " that shot is

awesome! " . Later someone mentioned that the kids can get a kind of " high " from

the steroid for a couple of days; I think that is true. His hip continues to be

in great shape.

>

> Good luck to you guys; we are pulling for you and and wishing you a

low-stress experience with GREAT results!

>

> , Mom to Ian, 9 1/2

>

>

>

[Guest guest]

I don't know why they don't ketamine here for short-term sedation, like they

do in Mexico at Dr. Aguilar's office. It's safe, quick and very inexpensive.

Oh - maybe I just answered myself - no profit.

[Guest guest]

> Hi All,

>

> I am actively looking for someone in Oregon, or even on the west

coast who

> will use protocol in mercury removal and sedate my son. I have

contacted the

> only two dentists on the Oregon list, they wont do sedation! Does

anyone know

> of anyone, Washington, California, Idaho???

> We found a dentist to do the removal but he insisted on trying gas

and

> Dylan, my son, tuned in instead of tuning out!

> Thanks,

>

Hi , There are some lists of dentists here:

/files/HOW_TO_find_doctor

Look for the section about DENTISTS.

There are links for a few lists of non-amalgam or biological

dentists. You would still have to contact them about the

sedation issue.

good wishes,

Moria

[Guest guest]

Yes... Versed is my prefered way to go!

I have had the BMB without any meds but there really isn't any reason to endure

it if i can get the versed.

The difference is amazing. One without meds was awkward painful and nerve

wracking. With versed i had a good little nap. I only become aware when they

actually punch into the bone and then only for one second and back to sleep.

Lottie is right i am actually 'aware' but i just dont care. So i put on my

headphones and i am less aware and just sleep. When it is done the nurse takes

out on of my headphones and asks me to get dressed and get in the wheelchair. I

do it and stay relaxed but awake.

I did have xanax once with the versed and that wasy way too much for me. I was

stoned until the next day! The versed alone is just the right combo for me.

Good luck!

Rhonda

Sent from my Verizon Wireless BlackBerry

[ ] Sedation

Dear Sharon T,

I'm sorry to learn that your son had such a painful experience. This was an

extreme case and since you know how painful it was for him, you can ask for him

to be sedated. You can ask for

Versed. You are awake, but you don't remember anything. I'm sure they would

accomodate him on that issue.

We do have a wonderful group of people at this site who genuinely care for

one another and I'm happy to know you had so many positive responses. The

humane thing to do when we have a very concerned newcomer is to reach out and

make comments about our own experiences, though not many are as complicated as

your son's case.

I'm glad you had a good experience with Dr. Shah and hopefully your son will

still be in chronic.

Perhaps they will find a donor very soon. If not you may want to consider chord

blood transplants. It is much easier to find a match from the baby's umbilical

chord. There are centers around the country who have chord blood banks. The

hospital should have that information available, but you can also find it

online.

Blessings and peace,

Lottie