Re: skinny kids

[Guest guest]

Lynn, boy I thought I was the only one! just turned 7, she is 45 inches tall and 42 pounds. She keeps losing weight. She has lost about 6 lbs. which on her is a real lot. She hardly ate anything for many months. Her appetite has picked up a little. She eats about 5 or 6 times a day. But, if I give her a hot dog, she eats maybe half. The doc recommended ice cream or shakes, she would eat maybe a half cup. 4 nuggets from Mcs, she eats 2 and half the fries. She is really thin. And my 11 year old son has a weight problem so I have to feed them seperate so he isn't eating all the fatty stuff. I am going to check out those protein drinks or whatever their called.

Pat & (1 year Systemic)

[Guest guest]

Hi and others:

It seems to me many people lately have mentioned how thin their kids are, how hard it is to put weight on them, for a variety of reasons. I just wondered, since I have long had this difficulty with Mickey as well. She is 7 now, and has just managed to get to 40 lbs! Before the arthritis kicked in at 3, she was in the 90th percentile for height/weight, has hardly grown since, BUT since we were finally able to get off prednisone for a few months this summer, all her pants are a few inches too short (YAYYYY!!!!!). The dietician that is part of her care-team at Toronto Sick kids is always sending me " fatten 'em up " recipes - high in calories, fats etc, to try to put some weight on her. Too bad she hates sauces, sugary foods, too much butter, etc, and prefers plain fruits and veggies! (why not me?????) Lately I've gotten her to drink a couple cans of Ensure (wildberry is the only one she like) and after a few months of that, she finally got to 40 lbs. She grew two inches too, which is the most she's grown in 4 years. One of the studies posted here in the spring indicated that systemic kids' metabolisms run about 30% higher than healthy kids, and even poly/pauci kids. I think it attributed the difference somewhat to the fevers they regularly run.

So I'm just wondering, taking an informal poll I guess, how many parents of kids with poly/pauci/systemic find their kids have trouble putting on weight, how old they are, does anyone have tips on how to encourage them to eat without being too pushy and risking some sort of eating disorder hyperfocus?

Thanks,

Lynn

From: " Sevco, " <sevcoca@...>

Reply-

Date: Wed, 17 Oct 2001 09:55:42 -0400

" ' ' " < >

Subject: RE: jessica's appt. in pitts.

I think the issue with taking it orally (via juice or pills) is that it may not be absorbed as well as giving the injections. My daughter is very thin and does not eat well so the doctors felt her body may not absorb things as well and wanted to do the injections because then they were sure the methotrexate was getting into her system.

Re: jessica's appt. in pitts.

<< Message: >> Dear Pat,Yes it is most definatelly ok to put it in the juice. sees

Dr. Lawton head rheumy at Vanderbuilts Childrens Hospital.He

told us it was oderless and tasteless. doesnt even know he takes

it.(hes 3).I think its worth talking to your DR.about it if you are

still having problems.Good luck Becki and 3systemic

sdbpab@... wrote:

> Becki & - Did the doc say it was ok to put the injectable stuff

> in juice? I sure wish I had known that when I was giving them to

> . We went thru weekly hell because of that.

>

> Pat & (1 year Systemic)

>

[Guest guest]

Dear Lynn,

My Kate (7-- severe poly and avascular necrosis of both hips) is small

too. She was dx. at 3 and was in the upper 80% of growth chart. Now

she's in the lower 5%. She doesn't look thin due to her " problems " (She

tends to look " squashed? " ) Part of it is the problem with her hips

making her posture not " up and down " but slightly bent. At first the dr.

said not to worry as I'm only 5 ft. and 112lbs. so it probably was

hereditary--but now has started to change her mind. I think her arms

tend to look " short? " for her body but may be due to involvement in her

shoulders (doesn't have much of a neck--reminds me of a little football

player! lol!--tough as one too!) Anyway--we pretty much let her eat what

she wants when she wants--as long as she gets the proper nutrients. If

she's not feeling good and wants icecream and pudding for dinner then

she gets it. We're lucky as she doesn't seem to abuse this at all. When

she's feeling good will eat fine. I try to keep a wide variety of food

on hand so she'll have something that sounds good to her. Even if she

doesn't eat much--it's just the fact that she is trying. She also has

ulcer trouble from meds and is on Prilosec--so when that's flairing with

the JRA at least try to get her to drink Ensure, milkshake or anything

that will help coat her stomach--even if it's just a little bit.

and Kate

[Guest guest]

Lynn

is 14 now before she was diagnosed she was only 79 pounds and that

was a 12 year old she had always been below the 5 percentile they had a

medical word for her Constitutional Growth Delay always a very tiny girl

always looked 3 years younger due to her size once she was diagnosed she

was put on this drug and that drug but she was allergic to them then the dr

put her on Voltaren this little girl went from 79 pounds to 130 pounds her

appetite increased right now she eats in small meals not a big meal 3 times

a day but several small meals in a day

she is not into sweets or junk foods but healthy veggies and chicken

if she didnt eat like this i would worry but she has started loseing weight

shes down to 120 now and shes looking good you know how the figures are in

14 year olds lolololol she was slow in developing also

i have 2 kids my son was skinny also then hit puberty and gained weight now

hes is skinny again his dr said its the metabolism is higher in him now

as long as the blood work looks good and they are healthy and eating i

wouldnt worry to much its when the blood work is off like the iron and the

cbc is down

Robbin

[Guest guest]

Lynn,

Nikki is pauci and weighed 25 pounds for an entire year (from age 3 when she got the JRA to age 4). The rheumatologist in Cincy told me that the JRA produces enzymes which make the kids NOT hungry but not all JRA kids have this problem. I worked for 4 months and got Nikki up to 28 pounds. She is now at 29 and is 4 1/2. She is below the 5% for weight. I have used "Scandishakes" which are a weight gaining powder and I make milkshakes with them using icecream and milk. Nikki would not drink the ensure. It is a struggle everyday to get her to eat. I tracked her calories for 6 months and need to get back to doing that b/c otherwise she does not put on any weight. Other suggestions to put on weight would be appreciated.

Thanks

Re: jessica's appt. in pitts. << Message: >> Dear Pat,Yes it is most definatelly ok to put it in the juice. sees Dr. Lawton head rheumy at Vanderbuilts Childrens Hospital.He told us it was oderless and tasteless. doesnt even know he takes it.(hes 3).I think its worth talking to your DR.about it if you are still having problems.Good luck Becki and 3systemic sdbpab@... wrote: > Becki & - Did the doc say it was ok to put the injectable stuff > in juice? I sure wish I had known that when I was giving them to > . We went thru weekly hell because of that. > > Pat & (1 year Systemic) >

[Guest guest]

>

> > Becki & - Did the doc say it was ok to put the injectable

stuff

> > in juice? I sure wish I had known that when I was giving them to

> > . We went thru weekly hell because of that.

> >

> > Pat & (1 year Systemic)

> >

[Guest guest]

Hi group ...haven't been on in awhile lots of new names here.. been very busy here since this summer,but have been trying to read posts as I can. I had to reply to this one ..my daughter Ashton is 15 and weighs 80 lbs. she has always been a thin girl but since the dx of JRA at age 12 she has only gained about 4 lbs and her growth has seemed to be delayed including puberty. I have tried some of the nutrtional drinks but she doesn't like them. this summer when her JRA was really well under control I did see an increase in appetite & she even gained weight. Lately with the weather changes and the stress of starting high school this year her weight has drooped once again. Dr's don't seem to offer much in the way of suggestions & it is frutrating for us both,kids ask her if she's anorexic & clothes are a nightmare to find. She wears a size 0 and that is onlty in a few select brands that fit! Wish I could offer some magical advise but all I can say is we are in the same boat as you! Kris

[Guest guest]

My daughter is too thin also. She is now 11 and 75 pds wet. The pediatrician said she has not gained in one year. She hasn't grown either. Every since she began with her JRA she has had height and weight problems. She has never had to take prednisone for long periods of time. It seem to me that this disease seems to effect there growth, They just ran a lot of GI related tests and everything came up OK. So we are increasing her calories, or at least trying.

When she was younger we could not keep her warm enough because of the decreased body weight. Her am temp would be 95- 96 degrees. Sometimes she would wake up with pale and blue lips and hands and feet. As soon as she entered a swimming pool, not heated we would have to take her out because she got to cold. It has improved since seh turned 9. Its now the weight and height issues mainly. I wish you all well SHU

[Guest guest]

I have also been very skinny my whole life, but thankfully I wasn't on

high-dose steroids as a child and therefore I have grown to my full height

(5'8 " ). The weight can be a problem, though, and right now the doctor is

trying to get me to gain more because I only weigh 120 which is not enough

for my height. Sometimes my friends are jealous that I try to gain weight

while they try to lose, but it's hard for me to eat when I'm not hungry and

to force myself to eat nutrition bars and other high-calorie things.

My normal body temperature is also very low, about 96 degrees in the morning

and maybe up to 97 by afternoon. I found out the other day that both of my

roommates also have low body temperatures, so I thought maybe it's not so

uncommon in young women; mine has been low my whole life though.

Anyway, I started my swimming class that I'm taking. I'm really enjoying it.

I told the instructor beforehand that I don't have full range of motion in

my shoulders, and she's working with me. I hadn't been swimming in years, so

when I got into the pool the first time I was so surprised by the feeling of

weighlessness on my joints! It's really wonderful to feel my joints able to

move around like that. Also, my range of motion should increase with all the

swimming. I have to take two PE courses for school, and swimming is really

the only one I can handle. So I'm glad I like it!

Be well -

Elisheva

_________________________________________________________________

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[Guest guest]

hi

if you can find this in your grocery stores this is a great and nutritional

product for those who want to gain weight its called BOSCO its a chocolate

syrup

mix in your milk and calories galore also ovaltine is another one

MALT is always high in calories i know its hard to keep the weight on

but when my hubby was younger he also was a skinny kid lololol just as both

of my kids and his mom made him drink the BOSCO with every meal

as years went on he gained weight by the time he was 19 or 20 he had gained

to 400 pounds this was way to much for him even though hes 6ft 4

after we married he went down to 200 and he will stay 200 to 220 pounds

but his mom thought that skinny kids were sickly

thats not always true

as i tell melissa God has plans for each of us and our weight can be gene

related or

just because but as long as you feel good thats good

not everyone is the same and if everyone was the same we all would think

alike

we are all different in some way

i will tell her to look in the mirror and look at what she sees

then i tell her what i see looking at her

and i tell her i look through her eyes and see her heart the inside

as long as the blood work looks good and the kids are feeling ok i see

nothing to worry about we are all different

in time the weight will be ok the height will be ok

just telling my sister the other day i lucked out on things lololol she asked

what are you talking about lololol i said look i was the first to come out

and here i am almost 40 and everyone has bigger feet than me everyone weighs

more than me and everyone is taller than me lololol she thought i was serious

and she said well Robbin your the one who knows alot and how things should

work

and we have never looked down on you but looked up to you

lolol i started laughing and said you think i am serious she said yes

i told her i am happy with myself lolololol at least i came out taller than

mom lololol

Robbin

[Guest guest]

Hi Kris,

It was nice to see a message from you here Glad to hear that this

past summer was a good one and that Ashton was doing so well. I hope the

change of seasons and start of a new school year doesn't put too much

undue stress on her.

She's definitely not alone with these growth issues and finding clothing

that fits well and looks good on her body type. It's getting a little

bit easier for now but for a long time, everything had to be

altered at home. His waist was for a size 12 or even 14 sometimes while

his height matched more a size 6. When the style was ultra-baggy jeans

with all the pockets down the legs, like the ones skateboarders like to

wear, we really had some creative sewing/alterations to do. I never much

was interested in sewing but it was definitely for a worthy cause so I

persevered, even with sore fingers.

Now I'm noticing that most of his jeans are a bit on the loose side at

his waist. He seems to be shrinking, right along with the steroid dose.

Better than being too chubby but weird that while most of his friends

are getting bigger he's getting smaller. I'm just hoping that his height

will start increasing a little bit and he'll level off somehow?

Only time will tell

Take Care,

Georgina

dkakheath@... wrote:

>

> Hi group ...haven't been on in awhile lots of new names here.. been

> very busy here since this summer,but have been trying to read posts as

> I can. I had to reply to this one ..my daughter Ashton is 15 and

> weighs 80 lbs. she has always been a thin girl but since the dx of JRA

> at age 12 she has only gained about 4 lbs and her growth has seemed to

> be delayed including puberty. I have tried some of the nutrtional

> drinks but she doesn't like them. this summer when her JRA was really

> well under control I did see an increase in appetite & she even gained

> weight. Lately with the weather changes and the stress of starting

> high school this year her weight has drooped once again. Dr's don't

> seem to offer much in the way of suggestions & it is frutrating for us

> both,kids ask her if she's anorexic & clothes are a nightmare to find.

> She wears a size 0 and that is onlty in a few select brands that fit!

> Wish I could offer some magical advise but all I can say is we are in

> the same boat as you! Kris

[Guest guest]

I've found jeans (28w 32l)on ebay for my very thin son. Patience

>

> My son is 17 and has really skinny hips and legs although he eats like a

> horse! Anyone else with this problem know where to get decent trousers/

> jeans etc., We usually end up with elasticated waist tracksuit bottoms or

> pull up trousers from Next - but they don't do many once you hit 16! He is

> quite tall - so other than braces I'm running out of ideas.

>

>

>

> From: Autism-Biomedical-Europe

> [mailto:Autism-Biomedical-Europe ] On Behalf Of

> Mum231ASD@...

> Sent: 20 April 2012 15:41

> To: Autism-Biomedical-Europe

> Subject: Re: Re: Louis Theroux's Autism programme

>

>

>

>

>

>

>

> That may be the case but I wish my sons school had a mock 'shopping high

> street' so that he could practice his life skills as they did.

>

>

>

> >>I Agree, Sam does that in community with residential but actually

> practising WORKING in the shop would be great

>

>

>

> Also, whilst we all aim for higher things for our children rather than

> envelope stuffing, just remember, the last programme we saw showed parents

> in this country PAYING for their children to work in a garden centre!! Not

> much worse I grant you but......

>

> >>Indeed, I think those of us with kids 16 or over see this programme

> slightly differently, however, Vicky gives us different perspective as she

> has two affected kids who are getting older

>

>

>

> Mx

>

[Guest guest]

I have the same problem with my skinny 16 year old, but he looks quite cool with

his underpants on show, it's still quite a trendy look amongst teenage boys

around here .... ;+)

N x

>

> My son is 17 and has really skinny hips and legs although he eats like a

> horse! Anyone else with this problem know where to get decent trousers/

> jeans etc., We usually end up with elasticated waist tracksuit bottoms or

> pull up trousers from Next - but they don't do many once you hit 16! He is

> quite tall - so other than braces I'm running out of ideas.

>

>

>

> From: Autism-Biomedical-Europe

> [mailto:Autism-Biomedical-Europe ] On Behalf Of

> Mum231ASD@...

> Sent: 20 April 2012 15:41

> To: Autism-Biomedical-Europe

> Subject: Re: Re: Louis Theroux's Autism programme

>

>

>

>

>

>

>

> That may be the case but I wish my sons school had a mock 'shopping high

> street' so that he could practice his life skills as they did.

>

>

>

> >>I Agree, Sam does that in community with residential but actually

> practising WORKING in the shop would be great

>

>

>

> Also, whilst we all aim for higher things for our children rather than

> envelope stuffing, just remember, the last programme we saw showed parents

> in this country PAYING for their children to work in a garden centre!! Not

> much worse I grant you but......

>

> >>Indeed, I think those of us with kids 16 or over see this programme

> slightly differently, however, Vicky gives us different perspective as she

> has two affected kids who are getting older

>

>

>

> Mx

>