Anyone know anything about PEM?

[Guest guest]

I am hoping someone here has knowledge of PEM...Protein Energy Malnutrition.

My is 7 and is beyond thin...he has no fat on him at all...he is 48+ inches

tall and weighs 41 or 42 pounds...on a good day. It has always been an issue

but it got significantly worse starting around age 3. We now realize he began

showing signs of his JIA at age 3.5...and he gained no weight at all over the

next two years.

Based on other issues he had/has...we blamed it on that...which was probably

only part of the issue. He's been thru feeding therapy for sensory issues and

eats better but not a lot of variety...but worlds better than before. He is on a

high calorie/high fat diet including one or two pedisure a day...but still

weight gain is slow.

Anyway, it really started bothering me lately so I started researching online.

Almost immediately I found PEM...and that it is quite common in JIA kids. The

percentages range from about 20 to 50% (as high as 70% in some dx's) of kids

having this based on the studies I found. But if is typically not recognized or

treated!

Anyone have any info for me? I am going to talk to his pediatrician and get a

referral to a gastro and a nutritionist but I'm hoping someone here has some

insight.

Thanks,

& , 7, poly plus a bunch of other stuff

[Guest guest]

I do not have any information for you.  But wanted to let you know you are not

alone. My 11 year old JIA son has weight issues. He is beyond rail thin and has

been for a very long time. He has a feeding tube because it is so bad. We have

an eating therapist that actually specializes in Liam's issues. She has only

been at our Children's hospital for a year. She told me about a month ago that

the hospital is actually seeing this as a trend that nobody is treating.

We have gone through several nutritionist. Either they are horrible or they have

no clue and drop us.

We have a GI doctor.

We have gotten are most sauces with his adolescent doctor which we had to wait

until he turned 9 to start seeing and our eating therapist.

________________________________

From: ahna08 <ahna08@...>

Sent: Wed, January 12, 2011 6:55:20 AM

Subject: Anyone know anything about PEM?

 

I am hoping someone here has knowledge of PEM...Protein Energy Malnutrition.

My is 7 and is beyond thin...he has no fat on him at all...he is 48+ inches

tall and weighs 41 or 42 pounds...on a good day. It has always been an issue but

it got significantly worse starting around age 3. We now realize he began

showing signs of his JIA at age 3.5...and he gained no weight at all over the

next two years.

Based on other issues he had/has...we blamed it on that...which was probably

only part of the issue. He's been thru feeding therapy for sensory issues and

eats better but not a lot of variety...but worlds better than before. He is on a

high calorie/high fat diet including one or two pedisure a day...but still

weight gain is slow.

Anyway, it really started bothering me lately so I started researching online.

Almost immediately I found PEM...and that it is quite common in JIA kids. The

percentages range from about 20 to 50% (as high as 70% in some dx's) of kids

having this based on the studies I found. But if is typically not recognized or

treated!

Anyone have any info for me? I am going to talk to his pediatrician and get a

referral to a gastro and a nutritionist but I'm hoping someone here has some

insight.

Thanks,

& , 7, poly plus a bunch of other stuff

[Guest guest]

I have not heard of that but the connection does sound interesting. Many of the

kids here do have weight gain issues. Once the JA started for he began to

lose weight. He is currently 6'4 " and weighs 160 if he is lucky. He was tested

for Crohn's as this began to happen, but the test came back negative.

I would be interested to see what your ped says. Hopefully someone here has some

info as well Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

ahna08

Sent: Wednesday, January 12, 2011 8:55 AM

Subject: Anyone know anything about PEM?

I am hoping someone here has knowledge of PEM...Protein Energy Malnutrition.

My is 7 and is beyond thin...he has no fat on him at all...he is 48+ inches

tall and weighs 41 or 42 pounds...on a good day. It has always been an issue but

it got significantly worse starting around age 3. We now realize he began

showing signs of his JIA at age 3.5...and he gained no weight at all over the

next two years.

Based on other issues he had/has...we blamed it on that...which was probably

only part of the issue. He's been thru feeding therapy for sensory issues and

eats better but not a lot of variety...but worlds better than before. He is on a

high calorie/high fat diet including one or two pedisure a day...but still

weight gain is slow.

Anyway, it really started bothering me lately so I started researching online.

Almost immediately I found PEM...and that it is quite common in JIA kids. The

percentages range from about 20 to 50% (as high as 70% in some dx's) of kids

having this based on the studies I found. But if is typically not recognized or

treated!

Anyone have any info for me? I am going to talk to his pediatrician and get a

referral to a gastro and a nutritionist but I'm hoping someone here has some

insight.

Thanks,

& , 7, poly plus a bunch of other stuff

[Guest guest]

Hi! I don't post much but I often follow the emails.

I can't really offer you any additional info, but I can commiserate! My

daughter was diagnosed with JRA in 2008 when she had just turned 6. In

2007 she had developed pneumonia. She went from 36 lbs to 29lbs. By

the time this past October came, she had FINALLY hit 42 lbs, and she's

47 " . That is 3 years with almost no weight gain. I had never looked

into it any further for several reasons. She was diagnosed with

Pervasive Development Disorder before being diagnosed with JRA. It

seems that she likely doesn't have PDD, it was just a reaction to the

pain, but it took a long time of treatment for the pain to figure that

out. She used to FREAK OUT when we mentioned dinner. I swear! We

couldn't figure out why... the word " dinner " would bring on a nightly

screaming fit that would last anywhere from 45 minutes to 3 hours. I

know that she had reflux at one point. Once we got her on a steady

supply of Prevacid she ate better. She also wouldn't try anything new

for a very long time. Her diet was extremely self-limited. I wonder

now if there is something more GI related because currently she's on

21mgs of Prednisone a day (cut from 42!) for Dermatomyositis, and she's

FINALLY eating!!! Not just eating, but trying new things! She came

home yesterday telling me that she tried tomato soup at school. I

almost had a heart attack!

I'll make a note to ask our rheumy when we go back in a couple of weeks.

Thanks for pointing it out!

le (Dee) Mom to (9) MCTD with JRA, Raynaud's,

Dermatomyositis, Scleroderma

>

> I am hoping someone here has knowledge of PEM...Protein Energy

Malnutrition.

>

> My is 7 and is beyond thin...he has no fat on him at all...he is

48+ inches tall and weighs 41 or 42 pounds...on a good day. It has

always been an issue but it got significantly worse starting around age

3. We now realize he began showing signs of his JIA at age 3.5...and he

gained no weight at all over the next two years.

>

> Based on other issues he had/has...we blamed it on that...which was

probably only part of the issue. He's been thru feeding therapy for

sensory issues and eats better but not a lot of variety...but worlds

better than before. He is on a high calorie/high fat diet including one

or two pedisure a day...but still weight gain is slow.

>

> Anyway, it really started bothering me lately so I started researching

online. Almost immediately I found PEM...and that it is quite common in

JIA kids. The percentages range from about 20 to 50% (as high as 70% in

some dx's) of kids having this based on the studies I found. But if is

typically not recognized or treated!

>

> Anyone have any info for me? I am going to talk to his pediatrician

and get a referral to a gastro and a nutritionist but I'm hoping someone

here has some insight.

>

> Thanks,

> & , 7, poly plus a bunch of other stuff

>

[Guest guest]

,

I don't know about PEM with JA, but I do with Lupus. I also know of several JA

kids that have trouble growing. My kids were diagnosed at age 10 and have

continued to grow normally. Steroids caused a lot of weight gain with my son,

so we have the opposite problem. My son has JA with Celiac developing this past

spring. I think sometimes one autoimmune disease begats another.

Audra

14 poly 07

Peyton 12 poly 08

>

> I am hoping someone here has knowledge of PEM...Protein Energy Malnutrition.

>

> My is 7 and is beyond thin...he has no fat on him at all...he

[Guest guest]

I think you are wise to talk with the ped. Anything I can find on it says

Secondary PEM, if it occurs, can develop gradually in children with chronic

illness who may not have the ability to absorb nutrients from their diet.

Certainly seems possible with JA. It does say it is easily treated, with diet,

if it is diagnosed.

Hope is feeling well, let us know what you find out. Michele ( 23,

spondy)

From: [mailto: ] On Behalf Of

ahna08

Sent: Wednesday, January 12, 2011 8:55 AM

Subject: Anyone know anything about PEM?

I am hoping someone here has knowledge of PEM...Protein Energy Malnutrition.

My is 7 and is beyond thin...he has no fat on him at all...he is 48+ inches

tall and weighs 41 or 42 pounds...on a good day. It has always been an issue but

it got significantly worse starting around age 3. We now realize he began

showing signs of his JIA at age 3.5...and he gained no weight at all over the

next two years.

Based on other issues he had/has...we blamed it on that...which was probably

only part of the issue. He's been thru feeding therapy for sensory issues and

eats better but not a lot of variety...but worlds better than before. He is on a

high calorie/high fat diet including one or two pedisure a day...but still

weight gain is slow.

Anyway, it really started bothering me lately so I started researching online.

Almost immediately I found PEM...and that it is quite common in JIA kids. The

percentages range from about 20 to 50% (as high as 70% in some dx's) of kids

having this based on the studies I found. But if is typically not recognized or

treated!

Anyone have any info for me? I am going to talk to his pediatrician and get a

referral to a gastro and a nutritionist but I'm hoping someone here has some

insight.

Thanks,

& , 7, poly plus a bunch of other stuff