weight gain

March 21, 2002

In a message dated 3/21/02 2:56:03 PM Pacific Daylight Time,

writes:

> . is definitely still a thinner build than

> most kids with ds.

>

> Karyn

>

So was .....until now!!!!!

March 21, 2002

In a message dated 3/21/02 4:39:04 PM Central Standard Time, Ltb3105@...

writes:

> Wonder what makes Zyprexa so different? The doc wants to try

> the Risperdal again, this time, with the Trileptal he's on, which we hadn't

>

> done before in that combo. We certainly can't have continue to gain,

> he

> will be a " false weight " for Dr. Capone to base any new dosages of med's

> on!!!! I will certainly have to let him know that that's not 's

> " normal

> weight " when we get there.

>

I remember trying on zyprexa. About one hour after getting it he

started banging his head on the floor. That would be the last dose he got.

The nurse practitioner for the behavioral neuro tells me " well one dose won't

tell us if it will work. "

I replied " it isn't going to work if his head is through the wall. Sometimes

it only takes one dose to know what won't work "

Karyn

March 22, 2002

Would you think is rare if not over-weight for a DS kid? He's

somewhat thin if he weights about 98lbs. & about 5'2. He's at my eye

level and I'm 5'3. I'm the short one at home and " the men in my life

are taller than I " . Passes as a typical athletic built. He must be

going the other direction up and not side ways. He stretched pretty

quick and went through 3 sizes since 2001 summer. Must be hubbys

genes, which I've been told. But, just have to wait and see if it'll

continue. No meds, though. I even removed the Trazadone to help with

the sleep as it had stopped working and he would just laugh loud,

rock & stim more than usual, it was not working anymore. I do see

that he is sleeping better without it, even if its just at a later

time than his bedtime. I guess I could blame it on the adjustment of

a CHANGE. Changes and a possible withdrawal would trigger other

behavior issues. The latest on him seems more agitated and when told

something he is back to the only " NO " word. I'm not giving up, I kind

of have an idea of the cause might be an adverse reaction to food and

additives triggering his central nervous system. So, I think I'm

going to go back to the food elimination to see which one is the

culprit the sugar,wheat, or the dairy. I've done it before and it was

the sugar in the past and now here I go again, but this time with a

doctor and nutritionist to work as they've worked with alot of

kids with autism. I'm not alone anymore. : )

Irma,13,DS/ASD

> In a message dated 3/21/02 2:56:03 PM Pacific Daylight Time,

> @y... writes:

>

> > . is definitely still a thinner build than

> > most kids with ds.

> >

> > Karyn

> >

>

> So was .....until now!!!!!

>

March 22, 2002

nathan has been on stimulant meds since 3yrs of age,

and they havent helped lower his appetite any, uuuugh,

i know they are suppose to but he is at his max at

54mg of concerta (a form of ritalin) plus another 10mg

every day at 330pm and the evenings are the worse, but

little to no stimulant left by then anyways. shawna.

=====

shawna

__________________________________________________

June 26, 2002

Dear Annette, my experience is very similar. I do not lose weight even when

supplementing thyroid hormone. When I complained about it to my endo dr she

told me the cause is probably my poor immune system. I have learnt that the

only thing that helped me tremendously to get rid of retained water was

Breakstone tea (Chanca Piedra) - actually I realized that it was retained

water after 4days' use of this tea when I looked in the mirror and saw my

face was sinificantly less rounded (as well as my neck and other parts of my

body) and four pounds less. Originally I started to drink Chanca piedra to

improve digestion.

Stania

-------Original Message-------

When I am my most ill I gain weight more quickly.

Antidepressants were the worst for me as I have

written about before. Diet makes no difference and my

experimentation has been extensive. Also exercise

programs.... It also is related to hormones.

In my case the " normal "

relationship between total calories and weightgain

doesn't exist. Annette

January 14, 2003

,

yup! It takes a few days. Or, if you are uncomfortable you could take some

tylenel PMS or pamprin PMS or a vitamin B6. They will all help!

Laurie

weight gain

Does anyone else gain weight when they get their period? I'm

depressed. If yes how long does it take to come off? My pants feel

tight again

January 14, 2003

Yes, yes, yes, although I gain the week before my period and lose it

all within two days of my period starting. Last time I gained (brace

yourself) 12 pounds!!!!!!! It WILL come off. Drink all the water

you can and hang in there.

> Does anyone else gain weight when they get their period? I'm

> depressed. If yes how long does it take to come off? My pants

feel

> tight again

January 14, 2003

:

I have the same problem. In the 7 months that I have been following

BFL, I have had virtually the identical pattern of weight loss

repeat itself every 4 weeks: 3 weeks where I lose 1-2 pounds a week

and one week when I actually gain a pound or 2. So, I have stopped

getting on the scale the week of my period and I just look at the

overal progress (i.e. 40-plus pounds down) rather than the scale not

moving for a week or so. The best part is weighing myself the next

week cause I usually have the biggest weight loss the week following

my period.

Sherri

> Does anyone else gain weight when they get their period? I'm

> depressed. If yes how long does it take to come off? My pants

feel

> tight again

January 15, 2003

Ick.... for me its a week... I gain about 5-7 lbs and feel so damn poofy I

can't stand it. Dont' get bummed out its only temporary!

~kimmah

weight gain

Does anyone else gain weight when they get their period? I'm

depressed. If yes how long does it take to come off? My pants feel

tight again

January 15, 2003

Yep! I do too. it's usually just a few lbs. starting a few days before

and then sort of hangs on until a few days after. So one week out of

the month I don't weigh at all. I can tell when it's come off and I

can weigh again. At that point the scale has gone down slightly from

where it was before I started. It all works out. Just stay off the scale!

> Does anyone else gain weight when they get their period? I'm

> depressed. If yes how long does it take to come off? My pants feel

> tight again

March 20, 2004

Georgie,

He should see his doctor ASAP.

Norm

Re: weight gain

Good morning group: brother in law gained 14 lbs

in a

week. fluid I would assume as he eats very

little.

Dr. upped his lasix. this ever happen

to anyone?

I am very

grateful for the responses I've

received

over the many questions I ask on behalf

of my

brother in law. We are all very concerned.

Georgie

=====

It is the

hour of trial that makes me great, not the hour of triumph.

July 13, 2004

If Tara is at home, the source of the weight gain is right there. It

lies in the balance of caloric input versus the exercise level and the

efficiency of the individual body. For a child at home, you can be in

charge.

Janet left home at 21 at 110 pounds. She was on her own and she peaked

at 170. Subsequent illness have brought her down to about 100 pounds.

This isn't the kind of weight loss regimine that I would really

advocate. Still, she loves how she looks and feels and we are working

to see that when she is back on her own that we don't do a repeat.

In this cycle, whenever Jan was home for a few weeks, I could peel off

five to ten pounds with serious attention to both diet (we all have to

deal with that, not just our kids/adults with DS) and exercise. As her

gymnastics coach for many years, I have some standing on the exercise front.

Jan's recent issues when they cut back her immuno-suppressant drugs has

her back on steroids and the diabetes is back .. :-( Exercise is the

first line of defense here and we are making it very clear to Jan. Diet

is the second line. Hopefully when she gets off these meds, the

diabetes will go away again.

The sleep apnea has to do with keeping enough oxygen in the blood. The

CPAP machine does help, but this really isn't related to putting on

weight, although the need is greater with more weight. One really

needs to look at cause and effect.

I'm wishing you the best in your quest to help Tara.

Rick .. dad to Jan

July 14, 2004

Rick,

I have to speak up on this one. Some of our children are on medication or

have a medical disorder that severely effects weight. For Tara, she had her

thyroid removed after the docs found tumors a few years ago. She lost tons

of weight and that was the first sign of her thyroid being way out of wack.

For , it's sad to see him want to eat and eat and eat. Let me give

you an example....he loves grapes (i buy them daily) and will eat every

single grape that I purchase. My local grocery store probably isn't happy

with me, but I take a bunch out and put them in another bag - still more

than one serving, but at least I know he won't eat enough to make him sick.

It's like his brain wants food, even though he is full, ends up with his

stomach hurting, etc. I feel the same way when I take steroids (which, I

refuse to take orally - the shots don't effect me the same way). I've lost

over 25 pounds myself since the end of March - so healthy eating is

something we are all doing - but continues to gain. We upped his

medication last month and we saw another huge increase in his appetite.

Fortunately, we also saw an increase in his behaviors and lowered it back

down.

As far as Tara goes, my heart breaks for her and for Ta (who probably

doesn't even weight 100 pounds herself). Tara's lungs and heart are

fragile - have been since she was born. She can't do strenous exercise -

but she does swim daily! Kids like Tara and can't comprehend

" diets " or understad cause and effect. Lord knows what they feel when their

brain signals constant hunger (or for Tara, her metobolism is way off).

Anyway, I feel there is only so much parents can control. Just my 02

cents.

re: weight gain

> If Tara is at home, the source of the weight gain is right there. It

> lies in the balance of caloric input versus the exercise level and the

> efficiency of the individual body. For a child at home, you can be in

> charge.

>

> Janet left home at 21 at 110 pounds. She was on her own and she peaked

> at 170. Subsequent illness have brought her down to about 100 pounds.

> This isn't the kind of weight loss regimine that I would really

> advocate. Still, she loves how she looks and feels and we are working

> to see that when she is back on her own that we don't do a repeat.

>

> In this cycle, whenever Jan was home for a few weeks, I could peel off

> five to ten pounds with serious attention to both diet (we all have to

> deal with that, not just our kids/adults with DS) and exercise. As her

> gymnastics coach for many years, I have some standing on the exercise

front.

>

> Jan's recent issues when they cut back her immuno-suppressant drugs has

> her back on steroids and the diabetes is back .. :-( Exercise is the

> first line of defense here and we are making it very clear to Jan. Diet

> is the second line. Hopefully when she gets off these meds, the

> diabetes will go away again.

>

> The sleep apnea has to do with keeping enough oxygen in the blood. The

> CPAP machine does help, but this really isn't related to putting on

> weight, although the need is greater with more weight. One really

> needs to look at cause and effect.

>

> I'm wishing you the best in your quest to help Tara.

>

> Rick .. dad to Jan

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

July 15, 2004

In a message dated 7/14/2004 11:00:05 PM Central Standard Time,

cindysue@... writes:

> Anyway, I feel there is only so much parents can control. Just my 02

> cents.

>

Hi

I totally agree Sara would have been labeled under weight UNTIL she had to

be put on steroids (for 3 weeks). She put on 20lbs in that 3 weeks and we

only could get 8lbs off. When Sara's started having seizures the medicine they

put her on made her also gain weight. She was starved 24-7. Even with eating

healthy food she put on weight. Sara is conscience of her weight, she wont say

she is fat but she does say she is chubby lol

Now we are Topamax and weight gain has stopped, her Neuro said this would be

a good drug for Sara since it was just FDA approved for weightloss ........

big plus for her. Sara does have problems sweating, she doesn't sweat, so any

sweating related activities can be dangerous for her (over heating will send her

into a seizure) swimming is the best exercise for Sara and she does this

daily............... even laps Luckily for Sara she has height in her favor.

we

are all tall and long legged here lol

Right now I watch her carb intake ........... sugars from fruit are OK and Im

limiting her pasta and bread ................ her favs. No coke only diet

sodas with Splenda. She does get Mcs as a treat, I will not deprive her of

the few favs she has But at least the Topamax has cut down her portions

Kathy mom to Sara 12

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

July 15, 2004

Cassie has been on steroids a lot at times and in the past year I would say

she has gone up to 72 pounds. I watch what she eat but she to has the thing

where she just wants and wants and wants and will eat it all if it is there.

She

has gain so much that she has lost the ability to jump and is slapping her

feet again when she walks.

Sorry I haven't wrote in forever and have been so out of touch had a really

rough pregnancy last year and was in the hospital a lot. But have a wonderful

11 month old now.

Tammy

mom to 5 including Cassie 6 ds

July 15, 2004

And the other side (to the argument for healthy eating and exercise), there

are some children who are blessed with such high metabolism that they don't

gain weight or grow effectively (I could do with that high metabolism!).

Tim eats for england (and the rest) but remains firmly at the 5th centile

for boys with DS for height and weight, mainly becoz of medical problems.

While he is also fit, even when he doesn't do so much like over the summer

break, he still remains slim and still packs away around 2000 calories a

day. I am so hoping that his eeg doesn't show up seisure activity becoz I

really don't want to deal with all these side effects I keep hearing about,

like the weight gain. If he put on 40 lbs like poor matthew he'd almost

double his present weight. He has started to become more solid as he

changes shape with age but theres still not an excess ounce on him. I am

also fortunate in that Tim is very partial to almost every kind of food

stuff on the planet (barring celery, sprouts and durian) and so will eat a

healthy diet most of the time.

Now my other children, they could really benefit from a more healthy eating

and exercise regime and if I had the no how (and was brave enough to risk

their wrath!!) I'd hook up their play stations and computers to exercise

bikes! Much of their daily eating is out of my hands as they eat in the

school canteen, and with ben able to afford to buy his own food if he feels

I am not providing the appropraite teenage diet I am losing my grip on his

eating! His idea and mine about what constitues a healthy teenage diet do

not come close!! Both kids are an ok weight but coming towards the top end

for their heights/ages. And I would be the perfect weight if I were 10 foot

4!!

sue wong

> Rick,

>

> I have to speak up on this one. Some of our children are on medication or

> have a medical disorder that severely effects weight. For Tara, she had

her

> thyroid removed after the docs found tumors a few years ago. She lost

tons

> of weight and that was the first sign of her thyroid being way out of

wack.

> For , it's sad to see him want to eat and eat and eat. Let me give

> you an example....he loves grapes (i buy them daily) and will eat every

> single grape that I purchase. My local grocery store probably isn't happy

> with me, but I take a bunch out and put them in another bag - still more

> than one serving, but at least I know he won't eat enough to make him

sick.

> It's like his brain wants food, even though he is full, ends up with his

> stomach hurting, etc. I feel the same way when I take steroids (which, I

> refuse to take orally - the shots don't effect me the same way). I've

lost

> over 25 pounds myself since the end of March - so healthy eating is

> something we are all doing - but continues to gain. We upped his

> medication last month and we saw another huge increase in his appetite.

> Fortunately, we also saw an increase in his behaviors and lowered it back

> down.

>

> > If Tara is at home, the source of the weight gain is right there. It

> > lies in the balance of caloric input versus the exercise level and the

> > efficiency of the individual body. For a child at home, you can be in

> > charge.

> >

> > Janet left home at 21 at 110 pounds. She was on her own and she peaked

> > at 170. Subsequent illness have brought her down to about 100 pounds.

> > This isn't the kind of weight loss regimine that I would really

> > advocate. Still, she loves how she looks and feels and we are working

> > to see that when she is back on her own that we don't do a repeat.

July 17, 2004

I've lost

> over 25 pounds myself since the end of March - so healthy eating is

> something we are all doing -

Make that over 30 pounds! Just got back from my weigh in Stopped at the

Farmer's Market to get my weekend veggies and inquired about buying 4 1/2

bushels of hot hungarian wax peppers (I'm canning peppers in sauce in 2

weeks - finally learning " the family " recipe from Tim's cousin).

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July 17, 2004

WHOO HOO Wy to go !!! What the heck are hungarian wax peppers??? Is that

your secret lol!!! Don't laugh they say eating spicy food stimulates weight

loss, yeah right bring on the taco's!!!!

Loree

Re: re: weight gain

I've lost

> over 25 pounds myself since the end of March - so healthy eating is

> something we are all doing -

Make that over 30 pounds! Just got back from my weigh in Stopped at the

Farmer's Market to get my weekend veggies and inquired about buying 4 1/2

bushels of hot hungarian wax peppers (I'm canning peppers in sauce in 2

weeks - finally learning " the family " recipe from Tim's cousin).

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July 17, 2004

They are yellow when ready and are like banana peppers. The sauce is tomato,

garlic and basil. Back home, they are eaten on sandwiches, pizza - almost

anything Italian. We are going to make 6 dozen - 3 for us and 3 for cousin

Sonny. Sonny is coming down to teach me (his exact words were - we are going to

have school first) and he said this will take 2 days to accomplish. It's hard

work (I've never canned before) and it takes two people to can them. No one

else in the family wants to do it anymore. MIL will watch .

Some people use bell peppers - the hungarian ones are hotter. This is also an

Italian recipe - Sonny is half Hungarian and half Italian, so maybe that has

influenced his selection of ingredients.

Wow, I wish I would have known that about peppers and losing weight - I would

eat them more often! I've lost my weight on the weight watchers flex point

plan. So easy - and it's not a diet, but a program and I can still have my

occasional sweets!

Re: re: weight gain

I've lost

> over 25 pounds myself since the end of March - so healthy eating is

> something we are all doing -

Make that over 30 pounds! Just got back from my weigh in Stopped at the

Farmer's Market to get my weekend veggies and inquired about buying 4 1/2

bushels of hot hungarian wax peppers (I'm canning peppers in sauce in 2

weeks - finally learning " the family " recipe from Tim's cousin).

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July 19, 2004

There is a young lady on Kaitlyns Special Olympics team who is in high school

and she is taller than me (I'm 5'4 " ) and is skinny as a rail. Quite the athlete

as well. So far Kaitlyn has remained short and skinny. She is only 48 " tall

and wears size 6X. She will be 11 in a few months. I am always wondering if

the weight is going to start to become a problem. When do most kids start

having weight problems? I'm thinking that it varies a lot.

Darcy

weight gain

Sarenda,

Don't assume all children with ds have a problem with weight gain. My

personal observation (and that's all it is) is that most seem to, and there

are many causes such as medication, etc.

I do know of several young adults with ds that are not heavy. It is

certainly something to be aware of to watch for. Be sure also to check

every year for Thyroid problems at your childs regular check up.

Our son (now 15) tested normal for thyroid every year until his 14 yo.

check-up. We started thyroid medicine--1 pill a day with no problems.

Have a good day, everyone.

Shirley

Click reply to all for messages to go to the list. Just hit reply for

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January 19, 2005

In a message dated 1/19/2005 2:02:57 P.M. Eastern Standard Time,

writes:

my younger daughter is having issues as she always has with eating. what is

all this talk about stomach stuff?? can someine explain what the stomach has

to

do with immune stuff?? im lost! she is 4 1/2 26 pounds and that is only

after

6 months of periactin in which she gained a whole 2 pounds at maximum dose!

the ped only says if she loses any more weight she will be in the hospital

on

iv. but something is DEFINETLY wrong with her eating. she has adhd and ive

tried blamming the adhd for it, but i cnat make it fit feeling wise in my

gut.

Hi there,

there have been several threads about g-tubes, FTT and weight gain. I just

thought that I would share some of our success and non-success. 3 of my

adopted children have been FTT. The baby still carries this diagnosis and our

6

yo was just reclassified with it. However, with that said. Marriela, my

youngest, had a VERY hard time gaining wt.. Like many, I thought, she's a

preemie (26 weeker and 1lb 12oz) so she'll just be small. But something kept

nagging at me. I took to GI and they started her on Duocal powder and Peptomen

Jr. Now, Peptomen Jr. is a foul tasting formula (though Marriela drinks it

like it's kool-aid! LOL) so I wouldn't recommend this for oral kids. However,

the DuoCal powder, I think has been the key to her weight gain. One tbs = 42

cal. We mix 2 tbs with each bottle, 2 tbs with each meal. The powder

dissolves into a tastless, odorless " thickner " . You can easily add it

applesauces, speghettios, oatmeal, soups, and of course glasses or bottles of

milk or

formulas. It's carbohydrate based and has really been the success in

Marriela's weight gain.

Now, with all of that said, we are not nearly as successful with our son

Trayvon. He has stagnated for the past 18 months at virtually the same height

and weight. I have tried the DuoCal, but he is " on to " me. He won't eat if

he thinks that I have " messed " with his food. Plus, he doesn't eat a lot of

foods that are DuoCal friendly. We are trying to find a " formula " he will

drink consistently. He decided that Pediasure is a HUGE NO NO! He didn't like

the Carnation Instant Breakfast drinks, Marriela's formula came back up as

soon as it went down, etc. etc. So we are off to the GI to find out the source

of his stomach woes. He has A LOT of vomiting, I will share whatever the

GI gives us as ideas!

Take Care and God Bless,

Mommy to

Annette

14yo - Selective Antibody Deficiency, IVIG dependent x 5 years, CP,

Developmental Delays, G-tube, HIV+. Hates Middle School and thinks she is going

to

grow up and live in a HOTEL in Las Vagas where there is a lot of " Bling Bling " .

Hmmm.

9yo - Past B and T cell dysfunction, IVIG x 12 months (now off over 2

years), brain tumor survivor, epilepsy, severe hearing impairment, ADD,

currently on every other day Zithromax as prophylaxis (and doing great with

it!)

In love with the WWE and likes to try out his " new " moves on. . . yep, ME!

Trayvon 6yo - Ivemark Syndrome, severe congential heart defects, asplenia,

severe GI issues (reflux, decreased gastric motility, previous malrotation of

the intestines), microcephalic, FTT. He could find fault with God himself if

left alone with him for 5 minutes!

Marriela 2yo - 26 wk preemie (1lb 12oz), severe chronic lung disease,

asthma, reflux, FTT, mild CP. She makes up in attitude what she lacks in size!!

_www.caringbridge.com/ny/my2angels_

(http://www.caringbridge.com/ny/my2angels)

April 11, 2006

Hi Pat:

I, too, have had issues with weight gain. I also have joint issues (need

double knee joint replacements) so I can sympathize with your

frustrations. Trying to lose weight with our issues (CFIDS & orthopaedic)

can be complex. I've done better with making small adjustments to my

eating habits. A small weight loss at first can equal BIG confidence.

Also, I had to lower expectations of what my body physically is able to

do at this point. Before I got sick with CFIDs and my knees became

destroyed, I would just starve myself and hop on my treadmill for intense

workouts when I needed to drop some weight. Managing my weight as I've

done in the past is no longer an option and I have had to investigate

other means. I would highly recommend a book called " THIN WITHIN " by Judy

Wardell if it is still in print. I found her ideas for getting back in

touch with your true physical hunger very beneficial. Last but not least,

I would encourage you to be gentle with yourself.

Best Regards,

Teena

On Tue, 11 Apr 2006 08:50:38 -0700 " patricia " <pcmattes@...>

writes:

>

> I think I am beginning to feel better, after a diagnosis of lupus

> and fibro for about 15 years. My problem now is that I have gained

> over 100 pounds and am having a difficult time getting it off. Has

> anyone been successful in losing weight? I am still recovering from

> a broken ankle and damaged joint going on 9 months so walking is

> difficult. But my appetite is still over of control. I need to eat

> less.

>

> Pat

>

April 11, 2006

Hi Teena...I too used to control weight by daily exercising. This is just not an

option anymore. I wish there was something to control appetite and depression at

the same time. I think they are connected.

Pat