Welcome Sydney's mom Debbie

[Guest guest]

Debbie - Welcome!!! Is Kansas City in KS or MO, I can't remember!!!

And welcome to MAGIC -- Katy and I are your current volunteer

directors so you will be hearing from Katy (who handles the family

contact part). Guessing you've figured out by now that lack of

appetite and GI issues are quite common among our wonderful kids!!!

Make sure that you order some of the convention videotapes/DVDs of

the last 2 conventions, because you will learn a TON from them. I

would start with the Stanhope one (Diagnosis and Basics) and

Harbison's (Treatment of RSS/SGA). Those are the most important

for a mom of a 1-year old.

Also, you can get from MAGIC a copy of the RSS/SGA library log that

lists all the medical articles. There is one on there that I can't

remember the number right now but gosh, no two of them, from prior

conventions that are the presentation handouts from the Nutrition

presentation and the My Child Isn't Eating -- feeding therapy

presentation. Call MAGIC 1-800-3MAGIC3 and ask them to send you the

library log. Copies of the articles are free to members (within

reason, of course -- there are 115-120 articles....)

Welcome!

> > > Rae,

> > >

> > > I don't know if malrotation is a characteristic of RSS yet,

but

> I

> > do

> > > know that many doctors are now looking for that condition if a

> > child

> > > has severe reflux or other gut issues. Unfortunately, there

are

> > no

> > > symptoms specific to it other than vomiting bile and when that

> > > happens, it can be a life-threatening situation. I recall the

> GI

> > > telling us that many people have it their whole lives and

never

> > know

> > > until it acts up. Some have died without it being found in

> time.

> > If

> > > the gut twists on itself, it could be only a matter of hours

> > before

> > > it's fatal. Then again, it can twist, untwist, etc.

> > >

> > > A GI series should show if there is this condition. And since

> so

> > many

> > > of our kids have GI issues, those tests are usually run. It

> > certainly

> > > would not hurt to ask about it being done. You can say that

> > you've

> > > heard of several RSS kids who have had this condition and

you'd

> > like

> > > it checked out.

> > >

> > > Jodi Z

[Guest guest]

Thank you so much ! I just got my welcome packet from MAGIC

in the mail yesterday and read up on everything...and did see those

videos listed like you mentioned. I am going to call and order

those soon. I definitely want to get to the convention next year.

I will also request the library log you talked about. Thanks again!

Debbie in Kansas City (actually Lenexa, KS, suburb of KC!)

> > > > Rae,

> > > >

> > > > I don't know if malrotation is a characteristic of RSS yet,

> but

> > I

> > > do

> > > > know that many doctors are now looking for that condition if

a

> > > child

> > > > has severe reflux or other gut issues. Unfortunately, there

> are

> > > no

> > > > symptoms specific to it other than vomiting bile and when

that

> > > > happens, it can be a life-threatening situation. I recall

the

> > GI

> > > > telling us that many people have it their whole lives and

> never

> > > know

> > > > until it acts up. Some have died without it being found in

> > time.

> > > If

> > > > the gut twists on itself, it could be only a matter of hours

> > > before

> > > > it's fatal. Then again, it can twist, untwist, etc.

> > > >

> > > > A GI series should show if there is this condition. And

since

> > so

> > > many

> > > > of our kids have GI issues, those tests are usually run. It

> > > certainly

> > > > would not hurt to ask about it being done. You can say that

> > > you've

> > > > heard of several RSS kids who have had this condition and

> you'd

> > > like

> > > > it checked out.

> > > >

> > > > Jodi Z

[Guest guest]

Thank you so much ! I just got my welcome packet from MAGIC

in the mail yesterday and read up on everything...and did see those

videos listed like you mentioned. I am going to call and order

those soon. I definitely want to get to the convention next year.

I will also request the library log you talked about. Thanks again!

Debbie in Kansas City (actually Lenexa, KS, suburb of KC!)

> > > > Rae,

> > > >

> > > > I don't know if malrotation is a characteristic of RSS yet,

> but

> > I

> > > do

> > > > know that many doctors are now looking for that condition if

a

> > > child

> > > > has severe reflux or other gut issues. Unfortunately, there

> are

> > > no

> > > > symptoms specific to it other than vomiting bile and when

that

> > > > happens, it can be a life-threatening situation. I recall

the

> > GI

> > > > telling us that many people have it their whole lives and

> never

> > > know

> > > > until it acts up. Some have died without it being found in

> > time.

> > > If

> > > > the gut twists on itself, it could be only a matter of hours

> > > before

> > > > it's fatal. Then again, it can twist, untwist, etc.

> > > >

> > > > A GI series should show if there is this condition. And

since

> > so

> > > many

> > > > of our kids have GI issues, those tests are usually run. It

> > > certainly

> > > > would not hurt to ask about it being done. You can say that

> > > you've

> > > > heard of several RSS kids who have had this condition and

> you'd

> > > like

> > > > it checked out.

> > > >

> > > > Jodi Z