Re: Why loss of appetite?

[Guest guest]

In a message dated 15/07/2006 13:43:16 GMT Standard Time, Kathy_R@... writes:

Just wanted to mention to be careful w/the paracetamale, because that is the same thing as acetaminophen, which is not a good medicine for people w/Down syndrome (according to Dr. Jill and Dr. L) due to the glutathione issue.

kathyR

y this is interesting 4 me as alex lives on the stuff as his temp keeps spiking 4 no reason and has bin doing this 4 the past 13 months he cant have ibruprofen as has cronick lung deisse and bruphin is bad 4 that so wood b interested in y promol is bad 4 ds kids ??????? hugs sylvia

[Guest guest]

Just wanted to mention to be careful w/the paracetamale, because that is

the same thing as acetaminophen, which is not a good medicine for people w/Down

syndrome (according to Dr. Jill and Dr. L) due to the glutathione issue.

kathyR

From:

Down Syndrome Treatment

[mailto:Down Syndrome Treatment ] On Behalf Of Müller

Sent: Saturday, July 15, 2006 7:03

AM

Down Syndrome Treatment

Subject:

Why loss of appetite?

(19Mo/9kg) eats about 700-800g of pureed food per day

and hardly drinks anything (a little water, but he refuses more). Since last

March he has been gaining weight nicely this way. Since the

start of July and since it got very hot here (and still is), his

temperature went up to 37,5 deg. Centigrade (98,6F), sometimes up to 38,1

(100,4F) or even 38,4 (101,12F), without any infection symptoms.

At the same time he started eating less. At first about 200g less per day, but

since last Monday, 10th of July, when he got 2 vaccinations

(dipht./catal./pert. + the 2nd dose of measels/rub/mumps) his appetite went

down even more, down to about 350 - bis 450g/day. His nappies have been more or

less dry since yesterday, maybe a little wet in the morning. Our paed. thought the elevated

temp. and loss of appetite might be caused by the heat. But we're

worried, because has already lost 300g in only 6 days, without there

being any change in sight. We just phoned the paed. on weekend duty and he

suggested we give him something (paracetamole) to bring his temp. down a bit in

order to normalize his appetite.

Is there anything else we should do or will the situation

just resolve by itself?

Is it only the heat or the vaccinations?

Thanks,

/Switzerland

[Guest guest]

It could be a conbination of both maybe ?? IF you get him temp down he may eat

a little more . Try offer colder foods to see if this helps. Or ice lollys to

lick ??

Sam still does not like to eat too much when its hot. You learn to adjust what

they will eat in what weather after a while. Sam likes colder foods now but

was very temperature sensitive initally when it came to food. A lot of our kids

dont seem to drink much generally . Sam did when he was on his bottle. But not

so much from a cup. Chilled puree fruit used to be a winner with sam , or

homemade furit milkshakes. Sorry I cant be of more help , I know this must be

very owrrying for you .

Why loss of appetite?

> (19Mo/9kg) eats about 700-800g of pureed food per day and

> hardly drinks anything (a little water, but he refuses more).

> Since last March he has been gaining weight nicely this way. Since

> the start of July and since it got very hot here (and still is),

> his temperature went up to 37,5 deg. Centigrade (98,6F), sometimes

> up to 38,1 (100,4F) or even 38,4 (101,12F), without any infection

> symptoms.At the same time he started eating less. At first about

> 200g less per day, but since last Monday, 10th of July, when he

> got 2 vaccinations (dipht./catal./pert. + the 2nd dose of

> measels/rub/mumps) his appetite went down even more, down to about

> 350 - bis 450g/day. His nappies have been more or less dry since

> yesterday, maybe a little wet in the morning. Our paed. thought

> the elevated temp. and loss of appetite might be caused by the

> heat. But we're worried, because has already lost 300g in

> only 6 days, without there being any change in sight. We just

> phoned the paed. on weekend duty and he suggested we give him

> something (paracetamole) to bring his temp. down a bit in order to

> normalize his appetite.

> Is there anything else we should do or will the situation just

> resolve by itself?

> Is it only the heat or the vaccinations?

>

> Thanks,

> /Switzerland

[Guest guest]

Thanks for the hint, Kathy. Had never heard of that before!

What else could we give him then as pain relief/fever drug?

RE: Why loss of appetite?

Just wanted to mention to be careful w/the paracetamale, because that is the same thing as acetaminophen, which is not a good medicine for people w/Down syndrome (according to Dr. Jill and Dr. L) due to the glutathione issue.

kathyR

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of MüllerSent: Saturday, July 15, 2006 7:03 AMDown Syndrome Treatment Subject: Why loss of appetite?

(19Mo/9kg) eats about 700-800g of pureed food per day and hardly drinks anything (a little water, but he refuses more). Since last March he has been gaining weight nicely this way. Since the start of July and since it got very hot here (and still is), his temperature went up to 37,5 deg. Centigrade (98,6F), sometimes up to 38,1 (100,4F) or even 38,4 (101,12F), without any infection symptoms.At the same time he started eating less. At first about 200g less per day, but since last Monday, 10th of July, when he got 2 vaccinations (dipht./catal./pert. + the 2nd dose of measels/rub/mumps) his appetite went down even more, down to about 350 - bis 450g/day. His nappies have been more or less dry since yesterday, maybe a little wet in the morning. Our paed. thought the elevated temp. and loss of appetite might be caused by the heat. But we're worried, because has already lost 300g in only 6 days, without there being any change in sight. We just phoned the paed. on weekend duty and he suggested we give him something (paracetamole) to bring his temp. down a bit in order to normalize his appetite.

Is there anything else we should do or will the situation just resolve by itself?

Is it only the heat or the vaccinations?

Thanks,/Switzerland

[Guest guest]

Why is it bad for acetaminophen and DS? I have not

heard of that before. Thanks

--- sylviabrtpck@... wrote:

>

> In a message dated 15/07/2006 13:43:16 GMT Standard

> Time,

> Kathy_R@... writes:

>

>

>

>

> Just wanted to mention to be careful w/the

> paracetamale, because that is the

> same thing as acetaminophen, which is not a good

> medicine for people w/Down

> syndrome (according to Dr. Jill and Dr. L) due

> to the glutathione

> issue.

> kathyR

>

>

>

>

>

> y this is interesting 4 me as alex lives on the

> stuff as his temp keeps

> spiking 4 no reason and has bin doing this 4 the

> past 13 months he cant have

> ibruprofen as has cronick lung deisse and bruphin

> is bad 4 that so wood b

> interested in y promol is bad 4 ds kids ???????

> hugs sylvia

>

__________________________________________________

[Guest guest]

Hi, My name is Alice, my daughter is Alice (DS age 10 1/2), I know many

of you from other lists.

This does sound like a possible vaccine reaction to me.

In that case the acetaminophen/paracetamole

is particularly contraindicated (see below).

How about using tepid water sponge baths to cool him off?

Perhaps others would know better, but Epsom salts in the bath might also

help.

Glutathione is a chemical mostly in the liver that participates in a lot of

detoxification, and is part of glutathione peroxidase which converts

hydrogen peroxide into water in fatty tissue (like the brain!)

Acetaminophen/paracetamole is detoxified in the liver by glutathione, which

is usually very low already in DS.

Jill ' paper on thimerosal neurotoxicity with glutathione

depletion was published in the journal Neurotoxicology Jan. 2005 and can be

found by Google search on title.

Neurotoxicology

Volume 26, Issue 1, January 2005, Pages 1-8

*Thimerosal Neurotoxicity is Associated with Glutathione Depletion:

Protection with Glutathione Precursors * *S.J. , Slikker

III, Stepan Melnyk, New, Marta Pogribna and Stefanie

Jernigan *

^1 Department of Pediatrics, University of Arkansas for Medical

Sciences

and Arkansas Children's Hospital Research Institute, Little Rock, AR

72202, USA

^2 Division of Biochemical Toxicology, National Center for

Toxicological

Research, Jefferson, AR 72079, USA

Received 24 May 2004; accepted 28 July 2004. Available online 29

September 2004.

Abstract

Thimerosol is an antiseptic containing 49.5% ethyl mercury that has

been

used for years as a preservative in many infant vaccines and in flu

vaccines. Environmental methyl mercury has been shown to be highly

neurotoxic, especially to the developing brain. Because mercury has a

high affinity for thiol (sulfhydryl (single bondSH)) groups, the

thiol-containing antioxidant, glutathione (GSH), provides the major

intracellular defense against mercury-induced neurotoxicity. Cultured

neuroblastoma cells were found to have lower levels of GSH and

increased

sensitivity to thimerosol toxicity compared to glioblastoma cells

that

have higher basal levels of intracellular GSH. Thimerosal-induced

cytotoxicity was associated with depletion of intracellular GSH in

both

cell lines. Pretreatment with 100 /μ/M glutathione ethyl ester or

/N/-acetylcysteine (NAC), but not methionine, resulted in a

significant

increase in intracellular GSH in both cell types. Further,

pretreatment

of the cells with glutathione ethyl ester or NAC prevented

cytotoxicity

with exposure to 15 /μ/M Thimerosal. Although Thimerosal has been

recently removed from most children's vaccines, it is still present

in

flu vaccines given to pregnant women, the elderly, and to children in

developing countries. The potential protective effect of GSH or NAC

against mercury toxicity warrants further research as possible

adjunct

therapy to individuals still receiving Thimerosal-containing

vaccinations.

Take care,

Alice - violist & HSing mom to Alice (DS) born Thanksgiving Day 1995

:-)

Hopewell Junction, NY

http://users.bestweb.net/~castella

[Guest guest]

, How is doing today? I am with in that it might just be a combination of both. Heat alone will bother lots of kids. As for fluids, what worked for was a cup and straw and having it available to her all the time. She won't drink as much from any other type of cup set up, though she can. She also likes it around her cause she tends to take frequent sips rather then just drink a lot at one time. Sometimes she wants a fresh cup with ice cubes in it. Just keep trying different things and different cup styles. Even so, when she is not feeling great, for whatever reason- drinking is the FIRST thing to go!! Drives me batty. I use oral syringes even with her being six, to get fluids into her. She happily sucks them out of the dropper type as long as I am willing to do it. Go figure??? If his body was spiking a temp in response to the vaccinations, that should be over by now. Carol in IL

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Another thing about fluids—when Danny was little, he would not

drink juice from a straw or cup..the only way he would take it is if we froze

it and made slushies that he could eat with a spoon…(or made into

popsicles)same thing with lots of fruits..the only way he wanted to eat them is

if they were frozen (fruit cocktail,pineapple,peaches,etc) he would bananas in

their natural state, but that’s about the only fruit I can remember that

he would eat non-frozen.

It was strange, because he would drink milk or water (or yes, I confess…pop)

fine from a straw or cup, but not juice. So maybe would like frozen

liquids?

He eats fruits/drinks juice fine now, but we have one of those little ice

shavers,(shaves regular ice cubes into snow cone ice) and he has slushies every

day, too

From:

Down Syndrome Treatment

[mailto:Down Syndrome Treatment ] On Behalf Of Carol in IL

Sent: Monday, July 17, 2006 10:08

AM

To:

Down Syndrome Treatment

Subject: Re:

Why loss of appetite?

,

How is doing today? I am with

in that it might just be a combination of both. Heat alone will bother lots of

kids.

As for fluids, what worked for was a cup and straw and having

it available to her all the time. She won't drink as much from any other type

of cup set up, though she can. She also likes it around her cause she tends to

take frequent sips rather then just drink a lot at one time. Sometimes

she wants a fresh cup with ice cubes in it. Just keep trying different things

and different cup styles.

Even so, when she is not feeling great, for whatever reason- drinking

is the FIRST thing to go!! Drives me batty. I use oral syringes even with her

being six, to get fluids into her. She happily sucks them out of the

dropper type as long as I am willing to do it. Go figure???

If his body was spiking a temp in response to the vaccinations,

that should be over by now.

Carol in IL

[Guest guest]

Hi lifesaver :-)

Indeed he's much better now, exactly one week after he got the shots.

Thanks for asking.

He's just started eating and drinking again, so we're very relieved

AND we can go on holiday tomorrow without having a bad conscience.

The next thing we're planning to tackle is his eating, because at 19mo

he's still having difficulties with anything that's more solid than

pureed veggies and fruit. Luckily we managed to unearth a speech

therapist trained in Castillo-Morales - a rare species over here, and

the best thing is about to come: she's willing to come to our house

for the therapy sessions!

To all of you: Thank you for replying to my post! One thing we've

learned from it all is that we're never going to let him get as many

shots at the same time again.

All the best,

>

> ,

> How is doing today? I am with in that it

might just be a combination of both. Heat alone will bother lots of kids.

> As for fluids, what worked for was a cup and straw and

having it available to her all the time. She won't drink as much from

any other type of cup set up, though she can. She also likes it around

her cause she tends to take frequent sips rather then just drink a lot

at one time. Sometimes she wants a fresh cup with ice cubes in it.

Just keep trying different things and different cup styles.

>

>

>

> Even so, when she is not feeling great, for whatever reason-

drinking is the FIRST thing to go!! Drives me batty. I use oral

syringes even with her being six, to get fluids into her. She happily

sucks them out of the dropper type as long as I am willing to do it.

Go figure???

>

> If his body was spiking a temp in response to the vaccinations,

that should be over by now.

>

> Carol in IL

>

>

>

>

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

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

[Guest guest]

Hi there,

is he 19mths? and eating pureed foods? It is unfortunate that he

was given soo many shots in one day! If you know a homeopath.. you

might give the homeopathic remedy for the vaccines and see if that

helps some. And, If he is really 19mths you should probably be

seeing a feeding specialist to get him on regular food. If not you

will have speech issues.

Is he little for his age? You might also ask for an IGF-1 test with

full thyroid panel to check hormone levels. But, it could be that

I didn't read age and weight correctly.

Best of luck!

>

> (19Mo/9kg) eats about 700-800g of pureed food per day and

hardly drinks anything (a little water, but he refuses more). Since

last March he has been gaining weight nicely this way. Since the

start of July and since it got very hot here (and still is), his

temperature went up to 37,5 deg. Centigrade (98,6F), sometimes up to

38,1 (100,4F) or even 38,4 (101,12F), without any infection symptoms.

> At the same time he started eating less. At first about 200g less

per day, but since last Monday, 10th of July, when he got 2

vaccinations (dipht./catal./pert. + the 2nd dose of

measels/rub/mumps) his appetite went down even more, down to about

350 - bis 450g/day. His nappies have been more or less dry since

yesterday, maybe a little wet in the morning. Our paed. thought the

elevated temp. and loss of appetite might be caused by the heat. But

we're worried, because has already lost 300g in only 6 days,

without there being any change in sight. We just phoned the paed. on

weekend duty and he suggested we give him something (paracetamole)

to bring his temp. down a bit in order to normalize his appetite.

> Is there anything else we should do or will the situation just

resolve by itself?

> Is it only the heat or the vaccinations?

>

> Thanks,

> /Switzerland

>

[Guest guest]

Dear ,

thanks for your input.

indeed has low level of IGF1 and slowly rising levels of TSH,

but the doctors think it's too early to do anything, because his

thyroid and growth hormone is still in the normal range and they don't

wan't to risk producing and underfunction by putting him on medication

already now. But we're keeping an eye on it.(btw, weight: 9.2kg/age:19mo)

You're completely right about the food and speech issues. hasn't

been able to tolerate solid food up until now because of his inflamed

stomach and esophagus, it just hurt him too much. Now that he's over

that - thank heavens, SCD and a nice lady on this list - we're

starting him on soft solid mashed foods. And he's now also being seen

by a castillo-morales speech therapist, so we're hoping to keep all

those issues in check until they go haywire.

Have a nice summer,

& Saskia & & Nora-Jane

Switz.

> >

> > (19Mo/9kg) eats about 700-800g of pureed food per day and

> hardly drinks anything (a little water, but he refuses more). Since

> last March he has been gaining weight nicely this way. Since the

> start of July and since it got very hot here (and still is), his

> temperature went up to 37,5 deg. Centigrade (98,6F), sometimes up to

> 38,1 (100,4F) or even 38,4 (101,12F), without any infection symptoms.

> > At the same time he started eating less. At first about 200g less

> per day, but since last Monday, 10th of July, when he got 2

> vaccinations (dipht./catal./pert. + the 2nd dose of

> measels/rub/mumps) his appetite went down even more, down to about

> 350 - bis 450g/day. His nappies have been more or less dry since

> yesterday, maybe a little wet in the morning. Our paed. thought the

> elevated temp. and loss of appetite might be caused by the heat. But

> we're worried, because has already lost 300g in only 6 days,

> without there being any change in sight. We just phoned the paed. on

> weekend duty and he suggested we give him something (paracetamole)

> to bring his temp. down a bit in order to normalize his appetite.

> > Is there anything else we should do or will the situation just

> resolve by itself?

> > Is it only the heat or the vaccinations?

> >

> > Thanks,

> > /Switzerland

> >

>