Re: Fwd: anesthesia not to use in DS

[Guest guest]

--Thank you Kristy for the important information!!

(Mom to Jakob, 8 MDS)

- In MosaicDS , kristy colvin <imdsapresident@i...>

wrote:

> Hi Everyone,

>

> These are drugs that are used along with anesthesia

> that aren't good for kids

> with DS.

> Chloral hydrate and atropine.

>

> Kristy

[Guest guest]

Dear Kristi,

I was wondering where you found this information. My daughter had to be

sedated for an MRI - swollen optic nerves, come to find out this is normal

in DS - they used Chloral Hydrate and it made her quite 'drunk' but never

did knock her out. She finally took a brief nap, probably due to

exhaustion, and the MRI did get completed but what an ordeal!!

Josie Loftus mom to Farrah mds age 3, Wyatt nearly 7, Gage 9 months

Fwd: anesthesia not to use in DS

> Hi Everyone,

>

> These are drugs that are used along with anesthesia

> that aren't good for kids

> with DS.

> Chloral hydrate and atropine.

>

> Kristy

>

>

> Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

> *************************************************

> Become a member of IMDSA at http://www.imdsa.com

> *************************************************

> MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

> *************************************************

>

[Guest guest]

Davina,

I will have to ask my nurse friend to explain it in

writing so I can forward it on. People with MDS and Ds

can not have this anesthesia because of the imbalance

caused by the extra chromosome. I know that Tim once

has a small dosage of this anesthesia for a MRI and

was asleep for over 24 hours and was sick to his

stomache when he wasn't sleeping. This was just

supposed to relax him during the MRI. It turned into a

nightmare! My friend's daughter had another med with

this in it and she broke out in a rash, couldn't wake

up, and her bladder was extended. She wound up in the

hospital! This is only for people with ds or mds. If

they do not have that imbalance, they can take that

anesthesia.

Kristy

--- Davina Abraham wrote:

---------------------------------

Kristy, I was just wondering, why is this form of

anesthesia bad for kids

with ds? Does this affect mds kids also? What about

kids that don't have

mds or ds? I'm just trying to understand what ds or

mds have to do with

this?

>

>Reply-To: MosaicDS

>To: MosaicDS

>Subject: Re: Fwd: anesthesia not to use in DS

>Date: Mon, 21 Apr 2003 06:33:58 -0700 (PDT)

>

>Dear Josie,

>This information was given to me by a friend of mine

>that is a nurse and has a child with ds. My son

always

>had extreme problems waking up from even a small bit

>of anesthesia. There are also anesthesia's that

>contain these dangerous anesthesia's, so you have to

>be clear with the doctors that you do NOT want this

>anesthesia in ANY FORM!

>Kristy

>

>--- im4no3 wrote:

>

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

>Dear Kristi,

>I was wondering where you found this information. My

>daughter had to be

>sedated for an MRI - swollen optic nerves, come to

>find out this is normal

>in DS - they used Chloral Hydrate and it made her

>quite 'drunk' but never

>did knock her out. She finally took a brief nap,

>probably due to

>exhaustion, and the MRI did get completed but what an

>ordeal!!

>Josie Loftus mom to Farrah mds age 3, Wyatt nearly 7,

>Gage 9 months

> Fwd: anesthesia not to use in DS

>

>

> > Hi Everyone,

> >

> > These are drugs that are used along with

anesthesia

> > that aren't good for kids

> > with DS.

> > Chloral hydrate and atropine.

> >

> > Kristy

> >

> >

> > Won't you please consider adding your personal

story

>on the MDS website

>today? http://www.mosaicdownsyndrome.com

> > *************************************************

> > Become a member of IMDSA at http://www.imdsa.com

> > *************************************************

> > MDS MESSAGE BOARD -

>http://www.mosaicdownsyndrome.com/discus

> > *************************************************

> >

[Guest guest]

I wonder if my son had this form of anesthesia. He had to be put to sleep

twice. Once was four years ago for catherization to close his PDA. He just

had surgery last year for T & A. He was fine after the PDA, but he did cry

really bad waking up from the T & A surgery last year. Do anesthesiologists

know that these are not good drugs for mds or ds patients? You would

imagine they would.

>

>Reply-To: MosaicDS

>To: MosaicDS

>Subject: Re: Fwd: anesthesia not to use in DS

>Date: Mon, 21 Apr 2003 12:33:52 -0700 (PDT)

>

>Davina,

>I will have to ask my nurse friend to explain it in

>writing so I can forward it on. People with MDS and Ds

>can not have this anesthesia because of the imbalance

>caused by the extra chromosome. I know that Tim once

>has a small dosage of this anesthesia for a MRI and

>was asleep for over 24 hours and was sick to his

>stomache when he wasn't sleeping. This was just

>supposed to relax him during the MRI. It turned into a

>nightmare! My friend's daughter had another med with

>this in it and she broke out in a rash, couldn't wake

>up, and her bladder was extended. She wound up in the

>hospital! This is only for people with ds or mds. If

>they do not have that imbalance, they can take that

>anesthesia.

>Kristy

>

>--- Davina Abraham wrote:

>

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

>

>

>Kristy, I was just wondering, why is this form of

>anesthesia bad for kids

>with ds? Does this affect mds kids also? What about

>kids that don't have

>mds or ds? I'm just trying to understand what ds or

>mds have to do with

>this?

>

>

>

>

> >

> >Reply-To: MosaicDS

> >To: MosaicDS

> >Subject: Re: Fwd: anesthesia not to use in DS

> >Date: Mon, 21 Apr 2003 06:33:58 -0700 (PDT)

> >

> >Dear Josie,

> >This information was given to me by a friend of mine

> >that is a nurse and has a child with ds. My son

>always

> >had extreme problems waking up from even a small bit

> >of anesthesia. There are also anesthesia's that

> >contain these dangerous anesthesia's, so you have to

> >be clear with the doctors that you do NOT want this

> >anesthesia in ANY FORM!

> >Kristy

> >

> >--- im4no3 wrote:

> >

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

> >Dear Kristi,

> >I was wondering where you found this information. My

> >daughter had to be

> >sedated for an MRI - swollen optic nerves, come to

> >find out this is normal

> >in DS - they used Chloral Hydrate and it made her

> >quite 'drunk' but never

> >did knock her out. She finally took a brief nap,

> >probably due to

> >exhaustion, and the MRI did get completed but what an

> >ordeal!!

> >Josie Loftus mom to Farrah mds age 3, Wyatt nearly 7,

> >Gage 9 months

> > Fwd: anesthesia not to use in DS

> >

> >

> > > Hi Everyone,

> > >

> > > These are drugs that are used along with

>anesthesia

> > > that aren't good for kids

> > > with DS.

> > > Chloral hydrate and atropine.

> > >

> > > Kristy

> > >

> > >

> > > Won't you please consider adding your personal

>story

> >on the MDS website

> >today? http://www.mosaicdownsyndrome.com

> > > *************************************************

> > > Become a member of IMDSA at http://www.imdsa.com

> > > *************************************************

> > > MDS MESSAGE BOARD -

> >http://www.mosaicdownsyndrome.com/discus

> > > *************************************************

> > >

[Guest guest]

YOu would think they would know, but apparently they

do not! When my friend's baby had surgery last time,

she told the doctors not to use this medication. They

did not use it, but they used another with that med in

it! That is why she had all the problems and became so

sick! So, we have to make sure that the doctors know

about this!

Kristy

--- Davina Abraham wrote:

---------------------------------

I wonder if my son had this form of anesthesia. He had

to be put to sleep

twice. Once was four years ago for catherization to

close his PDA. He just

had surgery last year for T & A. He was fine after the

PDA, but he did cry

really bad waking up from the T & A surgery last year.

Do anesthesiologists

know that these are not good drugs for mds or ds

patients? You would

imagine they would.

>

>Reply-To: MosaicDS

>To: MosaicDS

>Subject: Re: Fwd: anesthesia not to use in DS

>Date: Mon, 21 Apr 2003 12:33:52 -0700 (PDT)

>

>Davina,

>I will have to ask my nurse friend to explain it in

>writing so I can forward it on. People with MDS and

Ds

>can not have this anesthesia because of the imbalance

>caused by the extra chromosome. I know that Tim once

>has a small dosage of this anesthesia for a MRI and

>was asleep for over 24 hours and was sick to his

>stomache when he wasn't sleeping. This was just

>supposed to relax him during the MRI. It turned into

a

>nightmare! My friend's daughter had another med with

>this in it and she broke out in a rash, couldn't wake

>up, and her bladder was extended. She wound up in the

>hospital! This is only for people with ds or mds. If

>they do not have that imbalance, they can take that

>anesthesia.

>Kristy

>

>--- Davina Abraham wrote:

>

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

>

>

>Kristy, I was just wondering, why is this form of

>anesthesia bad for kids

>with ds? Does this affect mds kids also? What about

>kids that don't have

>mds or ds? I'm just trying to understand what ds or

>mds have to do with

>this?

>

>

>

>

> >

> >Reply-To: MosaicDS

> >To: MosaicDS

> >Subject: Re: Fwd: anesthesia not to use in DS

> >Date: Mon, 21 Apr 2003 06:33:58 -0700 (PDT)

> >

> >Dear Josie,

> >This information was given to me by a friend of

mine

> >that is a nurse and has a child with ds. My son

>always

> >had extreme problems waking up from even a small

bit

> >of anesthesia. There are also anesthesia's that

> >contain these dangerous anesthesia's, so you have

to

> >be clear with the doctors that you do NOT want this

> >anesthesia in ANY FORM!

> >Kristy

> >

> >--- im4no3 wrote:

> >

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

> >Dear Kristi,

> >I was wondering where you found this information.

My

> >daughter had to be

> >sedated for an MRI - swollen optic nerves, come to

> >find out this is normal

> >in DS - they used Chloral Hydrate and it made her

> >quite 'drunk' but never

> >did knock her out. She finally took a brief nap,

> >probably due to

> >exhaustion, and the MRI did get completed but what

an

> >ordeal!!

> >Josie Loftus mom to Farrah mds age 3, Wyatt nearly

7,

> >Gage 9 months

> > Fwd: anesthesia not to use in DS

> >

> >

> > > Hi Everyone,

> > >

> > > These are drugs that are used along with

>anesthesia

> > > that aren't good for kids

> > > with DS.

> > > Chloral hydrate and atropine.

> > >

> > > Kristy

> > >

> > >

> > > Won't you please consider adding your personal

>story

> >on the MDS website

> >today? http://www.mosaicdownsyndrome.com

> > >

*************************************************

> > > Become a member of IMDSA at http://www.imdsa.com

> > >

*************************************************

> > > MDS MESSAGE BOARD -

> >http://www.mosaicdownsyndrome.com/discus

> > >

*************************************************

> > >

[Guest guest]

Just my own opinion, but don't assume doctors know everything. They are

simply you and I with a different degree in school, and a different career.

They are human, and certainly want to be recognized as human (when they

don't have all the answers). Don't be afraid to ask about it! Also, just an

little tale from Jonas' birth. I was to have him 2 months early due to a

blood clot in the umbilical cord, which was found because I had a " feeling

that something was not right " at 3 am in the morning and went to the

hospital asking them to put the fetal monitor on and check the baby. When I

was rushed to the nearest large hospital with a high risk OB-GYN and a

neonatal intensive care unit via speeding ambulance, I was really not that

scared. When the anesthesiologist came to talk to me as they were prepping

me for an emergency C-section, I WAS afraid of the needle going into my

spine for the epidural. I told the doctor or anesthesia, that this was

scaring me more than any of the rest of the situation. He assured me that

he had done thousands of these, and that I was being silly. He actually

told me I was being silly because he was so good at what he does! Then, I

got into the operating room, and (I assumed) he was jamming a needle into my

back and hitting a bone in my spine and it felt like he was taking a mallet

and trying to hammer it in! I was crying in so much agony as he removed the

needle and tried 9 times to do this before getting it " right " . As my

husband soon realized when they let him in the room, the person at my spine

was an intern who had never done this before! I was so disgusted, after

that man assured me that because HE had done thousands of these, I was in

excellent hands! So please DO ask these doctors about every thing you feel

you need to know. When so many of them have never even seen a child with

MDS, they may not be thinking of it even if they know that these two

anesthesia types are not to be used with children with DS. My two cents for

what they are worth.

Barb Martz

Mom to Jonas 2 1/2 (MDS) & 8

Fwd: anesthesia not to use in DS

> > >

> > >

> > > > Hi Everyone,

> > > >

> > > > These are drugs that are used along with

> >anesthesia

> > > > that aren't good for kids

> > > > with DS.

> > > > Chloral hydrate and atropine.

> > > >

> > > > Kristy

> > > >

> > > >

> > > > Won't you please consider adding your personal

> >story

> > >on the MDS website

> > >today? http://www.mosaicdownsyndrome.com

> > > > *************************************************

> > > > Become a member of IMDSA at http://www.imdsa.com

> > > > *************************************************

> > > > MDS MESSAGE BOARD -

> > >http://www.mosaicdownsyndrome.com/discus

> > > > *************************************************

> > > >

[Guest guest]

Davina Abraham wrote:

>

>

> I was just wondering, why is this form of anesthesia bad for kids

> with ds?

I have read articles about the use of these anesthetics in DS. They were

not in layman's language but this is how I interpreted it. They

(atropine & chloral hydrate) can cause respiratory distress in persons

w/ds. The muscles in the airways can become too relaxed. I suppose the

lower the tone the greater the risk would be. The atropine I think is

used to speed the heart rate back up in if it gets too low while they

are under general anesthesia. Some kind of receptor is altered because

of the extra chromosome so the recommended dose for most individuals can

be an overdose in ds. I also remember reading that versed " is "

recommended to use for kids w/ds.

> Does this affect mds kids also?

Seems like kids w/mds would be at an increased risk for adverse effects.

I wouldn't take any chances.

> What about kids that don't have

> mds or ds?

I have not read anything concerning the general population.

Hope

> I'm just trying to understand what ds or mds have to do with

> this?

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks for the info on this anesthesia subject. I do understand it a little

better. I tell you, you do learn something new everyday. My son has

allergies really bad. Well, the whole family does.LOL. He was taking

claritin. But now claritin is an over the counter medicine. Does anyone know

if the liquid form of claritin for children is non persciption now also? I

like benedryl but I do believe it causes drowsiness. Any other non drowsey

allergy medicine anyone recommends? Pollen and cut grass starts his allergy

symptoms. thanks in advance.

>

>Reply-To: MosaicDS

>To: MosaicDS

>Subject: Re: Fwd: anesthesia not to use in DS

>Date: Tue, 22 Apr 2003 01:38:05 -0400

>

>

>Davina Abraham wrote:

>

> >

> >

> > I was just wondering, why is this form of anesthesia bad for kids

> > with ds?

>

>I have read articles about the use of these anesthetics in DS. They were

>not in layman's language but this is how I interpreted it. They

>(atropine & chloral hydrate) can cause respiratory distress in persons

>w/ds. The muscles in the airways can become too relaxed. I suppose the

>lower the tone the greater the risk would be. The atropine I think is

>used to speed the heart rate back up in if it gets too low while they

>are under general anesthesia. Some kind of receptor is altered because

>of the extra chromosome so the recommended dose for most individuals can

>be an overdose in ds. I also remember reading that versed " is "

>recommended to use for kids w/ds.

>

> > Does this affect mds kids also?

>

>Seems like kids w/mds would be at an increased risk for adverse effects.

>I wouldn't take any chances.

>

> > What about kids that don't have

> > mds or ds?

>

>I have not read anything concerning the general population.

>Hope

>

> > I'm just trying to understand what ds or mds have to do with

> > this?

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

>

>

[Guest guest]

" Any other non drowsey allergy medicine anyone recommends? Pollen and

cut grass starts his allergy

symptoms. "

When Claritin became OTC we switched my son to Allegra. It is

non-drowsy because it is only a decongestant. Benadryl is an

antihistamine which supposedly causes the drowsiness. We only use

Benadryl at bedtime or on airplane trips as needed! :-)

Hope this helps!

Sylvia (mommy to (almost 4, MDS) and 10 years

(asthma/allergies)

[Guest guest]

The information I got from an anesthesiologist at our Children's Hospital is

not that it is dangerous, but that anesthesia has to be adminstered slowly in

children with DS because they metabolize it differently. My 9 yo with DS

reacts very quickly to anesthesia and needs very little to put her out for a

long time. My 3 yo with DS reacts VERY slowly to anesthesia and needs enough

to put down a horse to even keep her out during surgery. When she had her AV

Canal repair, she was wide awake and trying to kick out her drainage tubes 45

minutes after she came off the heart/lung bypass. They were giving her

morphine and versed alternating every 15 minutes while on the ventilator just

to keep her down. She was only 7 weeks old! The anesthesiologists at our

hospital are very careful with DS kids. Our MDS daughter has never had

surgery so I don't know how she will react.

Barb - loving wife of dan! Mommy to ten of God's special angels: Chelsea

0:), Gabby 9, Halee 8, Becca 7, Davin 0:), Ana 4, Emma 3, Kamryn 0:),

15 months, Oliver 10 months!

[Guest guest]

Is Allegra OTC also? Any known side affects? Does it come in liquid form?

Geesh i'm sure asking alot of questions. sorry I will ask his

pediatrician what she suggest.

>

>Reply-To: MosaicDS

>To: <MosaicDS >

>Subject: RE: Fwd: anesthesia not to use in DS

>Date: Tue, 22 Apr 2003 07:35:24 -0700

>

> " Any other non drowsey allergy medicine anyone recommends? Pollen and

>cut grass starts his allergy

>symptoms. "

>

>When Claritin became OTC we switched my son to Allegra. It is

>non-drowsy because it is only a decongestant. Benadryl is an

>antihistamine which supposedly causes the drowsiness. We only use

>Benadryl at bedtime or on airplane trips as needed! :-)

>

>Hope this helps!

>Sylvia (mommy to (almost 4, MDS) and 10 years

>(asthma/allergies)

>

>

>

>

[Guest guest]

Hello!

What a big racquet the drug companies are running! The drug company who

makes Claritin is quite likely close to losing their exclusive rights to

manufacture that drug, and so before the world population who uses it gets

used to purchasing a much cheaper generic brand of it, they push for it to

go over the counter, and they still make their fortune off the drug.

Insurance companies will not cover the over the counter drugs, and that

makes them happy too! I take Allegra for allergies. It is a prescription

still at this point. They have come up with a once a day form of Allegra

instead of the twice a day formula that they are pushing because the twice a

day brand will also likely soon go to generic. If they can get you to switch

to the once a day formula, they have your money or the insurance company's

money for that much longer. The other thing is that the insurance companies

are lovely about calling things " non-formulary " in order to try to force you

to buy the over the counter drug or a generic alternative so they can save

money. In that case your physician would have to say that he or she

specifically wanted you on the non formulary brand because it works for you

the best, or whatever the reason. Benadryl works well, and is even

affordable, but it does make most people VERY sleepy, especially children.

Benadryl is actually sometimes offered to patients as a suggested

alternative to sleeping pills. One thing about Benadryl, it is not

recommended for folks with asthma. I believe that it has an asprin

derivative in it, and that is probably the reason, but I am not sure. It

may also be on the list of NO NO's for young children, like Pepto Bismol,

and others that contain asprin due to the Rye Syndrome risks. I am not sure

if Allegra is approved for children, but I think it is. I find that it

helps me, and does not seem to make me personally sleepy or anything like

that. I hope you can find something that will work well for you that you do

not have to go broke paying for! Allergies can be so miserable. We are in a

peak pollen season right now here in Pennsylvania I think due to the Spring

and all the things coming out and blooming. (Not that I am complaining about

the beauty of Spring! Love those tulips, daffodils, and other great

flowers in the cutting bed!

Blessings to All,

Barb Martz

Mom to Jonas 2 1/2 & 8

Re: Fwd: anesthesia not to use in DS

> >Date: Tue, 22 Apr 2003 01:38:05 -0400

> >

> >

> >Davina Abraham wrote:

> >

> > >

> > >

> > > I was just wondering, why is this form of anesthesia bad for kids

> > > with ds?

> >

> >I have read articles about the use of these anesthetics in DS. They were

> >not in layman's language but this is how I interpreted it. They

> >(atropine & chloral hydrate) can cause respiratory distress in persons

> >w/ds. The muscles in the airways can become too relaxed. I suppose the

> >lower the tone the greater the risk would be. The atropine I think is

> >used to speed the heart rate back up in if it gets too low while they

> >are under general anesthesia. Some kind of receptor is altered because

> >of the extra chromosome so the recommended dose for most individuals can

> >be an overdose in ds. I also remember reading that versed " is "

> >recommended to use for kids w/ds.

> >

> > > Does this affect mds kids also?

> >

> >Seems like kids w/mds would be at an increased risk for adverse effects.

> >I wouldn't take any chances.

> >

> > > What about kids that don't have

> > > mds or ds?

> >

> >I have not read anything concerning the general population.

> >Hope

> >

> > > I'm just trying to understand what ds or mds have to do with

> > > this?

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

Sorry, a little slow on the uptake I guess, I have know so many folks who

are afraid to question doctors that my brain was there.

Barb Martz

Fwd: anesthesia not to use in DS

> > > > >

> > > > >

> > > > > > Hi Everyone,

> > > > > >

> > > > > > These are drugs that are used along with

> > > >anesthesia

> > > > > > that aren't good for kids

> > > > > > with DS.

> > > > > > Chloral hydrate and atropine.

> > > > > >

> > > > > > Kristy

> > > > > >

> > > > > >

> > > > > > Won't you please consider adding your personal

> > > >story

> > > > >on the MDS website

> > > > >today? http://www.mosaicdownsyndrome.com

> > > > > > *************************************************

> > > > > > Become a member of IMDSA at http://www.imdsa.com

> > > > > > *************************************************

> > > > > > MDS MESSAGE BOARD -

> > > > >http://www.mosaicdownsyndrome.com/discus

> > > > > > *************************************************

> > > > > >