Re: SOME GLOSSARY QUESTIONS -

[Guest guest]

Hello again !

We were ALL new to this at one time or another, so don't feel bad. It takes

time to learn all the abbreviation we use here. I'm really glad to see that

you feel comfortable enough to ask!

My grandson, , has a g-tube. This is a gastronomy tube that goes

directly into the stomach for feeding. received his at 8.5 months of

age because he had developed such a severe oral aversion that he would not

eat by mouth. He's improving with his oral eating skills but still gets more

than 95% of his calories through his g-tube.

There are also J-tube, NG (nasal-gastric tubes), ND (nasal-duodenum tubes),

and GJ tubes.

J_tube - I believe that this tube is placed similarly to a g-tube, but goes

through the abdominal wall, directly into the intestines. This tube helps

children with severe reflux.

NG - goes through the nose and down into the stomach

ND - goes through the nose, bypasses the stomach into the first part of the

intestines, the duodenum. This tube helps kids with severe reflux.

GJ - this is actually a specialized button. It has both a g-port and a

j-port. With this type of button, the J-port has a tube attached that by

passes the stomach and goes into the jejunum (the second part of the

intestines, just past the duodenum). You use the J-port for feeding, and the

G-port is left for giving meds, or venting which releases air trapped in the

stomach. This button is used to help children with severe reflux.

Anything with N in front can be placed without surgery. Anything with G or J

in front requires surgery for placement.

I hope this helps. If I didn't explain something well enough PLEASE feel

free to let me know and I'll try again.

IUGR - Intra-Uterine Growth Retardation/Restriction - This means that the

child in-utero is found to be too short, when measured during an ultrasound.

MILs - Mother-In-Laws

ADHD - Attention Deficit Hyperactivity Disorder

Hope this helps!! We should start a " glossary " of terms in the files

section.

Pat (g-ma to , RSS, 3 yrs 11 months old, 25#, 34.6 " , G-tube, GHT)

[Guest guest]

Dear Pat,

First of all let me tell you that is blessed for having such

a lovely, prepared and cute grandmother. It must be really useful

for him to have you near him. My mother, Nicolas' grandmother would

love to speak English to participate in this chat (she is just

completely focused on knowing everything about the Syndorme and

being able to support me - she has been signed in the Spanish

support group!)and being as an expert as you.

Thanks for explaining all those terms and abbreviations so well. I

do feel now more able to understand and talk about the syndrome. I

loved that abbreviation for Mothers in Law - MIL...it is one of my

favourite subjects!!! some day I will tell you about mine, she is

quite a character and even though she loves my baby and is extremely

special with me and Nicolas, she is not supportive at all with me

taking into account that my family lives in a different city that I.

I send you all my best wishes and blessing for to keep

improving his food aversion. I am glad Nicolas fights when eating

but at least he eats what we give him.

Lots of hughes

>

> Hello again !

>

> We were ALL new to this at one time or another, so don't feel bad.

It takes

> time to learn all the abbreviation we use here. I'm really glad to

see that

> you feel comfortable enough to ask!

>

> My grandson, , has a g-tube. This is a gastronomy tube that

goes

> directly into the stomach for feeding. received his at 8.5

months of

> age because he had developed such a severe oral aversion that he

would not

> eat by mouth. He's improving with his oral eating skills but still

gets more

> than 95% of his calories through his g-tube.

>

> There are also J-tube, NG (nasal-gastric tubes), ND (nasal-

duodenum tubes),

> and GJ tubes.

> J_tube - I believe that this tube is placed similarly to a g-tube,

but goes

> through the abdominal wall, directly into the intestines. This

tube helps

> children with severe reflux.

> NG - goes through the nose and down into the stomach

> ND - goes through the nose, bypasses the stomach into the first

part of the

> intestines, the duodenum. This tube helps kids with severe reflux.

> GJ - this is actually a specialized button. It has both a g-port

and a

> j-port. With this type of button, the J-port has a tube attached

that by

> passes the stomach and goes into the jejunum (the second part of

the

> intestines, just past the duodenum). You use the J-port for

feeding, and the

> G-port is left for giving meds, or venting which releases air

trapped in the

> stomach. This button is used to help children with severe reflux.

>

> Anything with N in front can be placed without surgery. Anything

with G or J

> in front requires surgery for placement.

>

> I hope this helps. If I didn't explain something well enough

PLEASE feel

> free to let me know and I'll try again.

>

> IUGR - Intra-Uterine Growth Retardation/Restriction - This means

that the

> child in-utero is found to be too short, when measured during an

ultrasound.

>

> MILs - Mother-In-Laws

>

> ADHD - Attention Deficit Hyperactivity Disorder

>

> Hope this helps!! We should start a " glossary " of terms in the

files

> section.

>

> Pat (g-ma to , RSS, 3 yrs 11 months old, 25#, 34.6 " , G-

tube, GHT)

>

[Guest guest]

,

Thank you SO much for the wonderful compliments! That is so sweet of you.

I adore my grandson, and count his participation in my life as a daily

blessing! I think he's just about the best thing since sliced bread! LOL Now

if only he would eat it!!

I put in approximately 15 hours a week in research for 's various

problems. When we were new to the Syndrome, and trying to figure out what

courses of treatment were best for him, I put in about 50 hours a week! So

it does get much easier!!

His oral aversions are getting better in some ways. He's currently eating

chicken nuggets, fish sticks, pizza, some dry cereals, and various junk

foods. It's frustrating right now because he's slowly limiting the things

he's willing to eat, and is refusing to try anything new. He used to eat any

kind of chip, but now he'll only eat plain, no ruffles. He used to eat a lot

of different types of crackers, and lately he'll only eat saltines.. Very

frustrating!! I'm hoping it's just a " stage " and he'll outgrow it in time.

I would love to chat with your mom. Unfortunately, I don't speak Spanish. It

sounds like she's wonderfully supportive, and I'm glad to know you have

that.

Take care. Glad I could be of some help!

Happy Holidays!!

Pat (g-ma to , RSS, 3 yrs 11 months old, 25#, 34.6 " , G-tube, GHT)