Re: DOES HE OR DOESN'T HE? WILL WE EVER KNOW, AND DOES IT EVEN MATTER?

[Guest guest]

Thanks, Cheryl. Your son, , was smaller than

Jake at birth--2 lbs., 3 oz, he measured 14 " long, and

his head was 8 3/4 " . You know, when I first saw a

picture of (Blau?) in the MAGIC newsletter

(this is an old one I'm referring to), I thought he

and Jake looked alike. But, to be honest, Jake does

not look like the children in the photos.

Good luck with your own confusing situation!!!

Debbi

--- Slane wrote:

> Debbi,

>

> My son was definately in a state of

> starvation from birth on. They

> had to feed him 1cc of breast milk every 6 hours at

> birth because his body

> was still in so much shock. He was born with a very

> large head for his

> little body. He was only 1 lb. 13 oz, 14-1/2 " long

> (he is a 6 week premature

> triplet but my others were of good size). I would

> not say his ears are

> low-set and prominent. He does not have the incurve

> pinkie. He has at least

> a dozen traits for RSS. Our geneticist has not

> clearly defined him as RSS,

> but our GI doctor has. Talk about confusion. I

> strongly feel he's RSS -- he

> just looks it on top of the traits he has. He could

> be a poster child for

> the Human Growth Foundation. They mailed me out a

> newsletter on RSS and I

> would sware my was on the cover. Anything

> else you'd like to know,

> just let me know.

>

> Cheryl

> Mom to (RSS with a G-tube), and

> (23 month triplets)

>

> debbi schaffer wrote:

>

> >

> >

> > Hi, Kathleen and everyone!

> >

> > THE FOLLOWING IS KINDA LONG, BUT IN IT I AM ASKING

> FOR

> > RESPONSES TO SOME QUESTIONS, SO PLEASE READ ON:

> >

> > Yes, Kathleen, I am feeling a bit fed up.

> >

> > Also, I'm wondering by-- 1. having watched some (I

> got

> > intrerrupted and haven't had a chance to finish)

> of

> > Dr. Harbison's session on video from the '98 MAGIC

> > convention and 2. having seen all of the photos in

> the

> > shared files -- if Jake does, in fact, have RSS.

> >

> > Now, don't get me wrong--I am still PO'd by Dr.

> > Harbison's unacceptable treatment of Jake and us

> in

> > Sept. (And I USUALLY let go of negative thoughts

> very

> > quickly). However, as a smart, mature,

> open-minded

> > individual (I'm gonna be 35 tomorrow), I also

> > acknowledge that she (obviously) sees a lot of RSS

> > children and probably " knows " her stuff.

> > _______________

> > Side note: I don't agree that knowledge is more

> > important than bed-side manner. Actually,

> arrogrance

> > and self-importance can be, sometimes, dangerous.

> I

> > think that it's absolutely important for the child

> to

> > feel comfortable with a competent,

> > willing-to-learn-if-necessary doctor because it is

> all

> > about the child, afterall, isn't it?

> > _______________

> >

> > So, based on Dr. Harbison's feeling that Jake does

> not

> > have RSS due to his " looks " -- his head is

> actually

> > slightly small for his chron age, no asymmetry and

> no

> > low-set ears

> >

> > and based on her points in the video about during

> > infancy, the head is substantially larger than the

> > body and that the body is actually in a starvation

> > state (Jake was almost chubby from about 4 mos

> till

> > about 14 mos or so---there was definately nothing

> like

> > starvation-symptoms going on) He didn't start to

> > " lose ground " until between 14 mos to 18 mos.

> >

> > and based on all the wonderful children in the

> shared

> > files--these beautiful children of God do, in

> fact,

> > have larger-looking heads than Jake. And, in

> fact, do

> > have lower-set, more prominent ears than Jake.

> >

> > Ok, so, does it really even matter if it's not

> truly

> > RSS? If it's not RSS, then I think we've had so

> many

> > people 'in on this', that something else should

> have

> > been detected if there is a name for it. The one

> > concern we've had all along (from 18 mo's till

> now) is

> > if we don't know what causes Jake not to grow

> > 'normally' then are there any medical concerns

> down

> > the road that we should be aware of?

> > _____________________

> > Side note: There is a syndrome that presents

> after

> > the first year of life with normal growth--I don't

> > remember the name of it, but that was considered

> and

> > ruled out as well.

> > _____________________

> >

> > SO, I AM ASKING AS MANY OF YOU AS POSSIBLE TO

> RESPOND

> > WITH: 1. WHETHER OR NOT YOUR CHILD WAS IN, AS DR.

> > HARBISON INDICATES, A STATE OF STARVATION FROM

> BIRTH

> > ON, 2. IS YOUR CHILD'S HEAD LARGER THAN HIS BODY

> WOULD

> > LEAD YOU TO THINK IT WOULD BE AND 3. ARE YOUR

> CHILD'S

> > EARS LOW-SET AND PROMINENT?

> >

> > I think I got in everything I wanted to--

> >

> > Thanks for reading on and for responding!!!!!!

> >

> > Debbi, mom to Jake ('s Short-Stature Syndrome

> ?)

> >

> >

> > --- Kathleen Fitzpatrick wrote:

> > > Debbi,

> > > Wow, that's confusing, not to mention

> frustrating!

> > > You must be fed up at

> > > this point. Can I ask on what points the

> geneticist

> > > and Dr. H disagree?

> > > Were there particular traits that Dr. H was

> looking

> > > for that Jake didn't

> > > possess?

> > > Kathleen

> > >

> > > Responses to Kathleen's

> posts

> > >

> > >

> > > >

> > > >

> > > >Kathleen,

> > > >

> > > >Hi, I'm responding to two of your recent posts

> (Dec

> > > >30th to me) and today's re: 1/3 RSS kids sent

> to

> > > Dr.

> > > >Harbison not being RSS.

> > > >

> > > >You asked me in the first one if Dr. Harbison

> > > changed

> > > >her mind about the RSS diagnosis. (We got the

> dx

> > > from

> > > >CHOP when Jake was 3 yrs., 8 mos in Nov. 98

> from a

> > > >highly regarded Geneticist). We saw Dr.

> Harbison

> > > in

> > > >Sept. 99 and she said he does not have RSS.

> So, we

> > > >saw the Geneticist again in Oct. 99 --she said,

> > > " yes,

> > > >RSS is still the 'working diagnosis'. We saw a

> > > >different Pediatric Endocrinologist in Dec. 99

> who

> > > >said, " you have two good doctors with opposite

> > > >opinions: could be RSS, may not be RSS. (He)

> will

> > > >research fully RSS as it relates to growth and

> GH

> > > >treatments and will let us know (his)

> > > recommendation

> > > >in a few weeks. "

>

=== message truncated ===

__________________________________________________

[Guest guest]

Debbi

Christian was 'state of starvation',his head is large and no he doesn't have

lowset or prominent ears.He didn't look RSS until he was 2[NO

assimetry,curved finger etc ]but he did have all the feeding ,slow growth

problems.From 2 he looked much more RSS [skinnier,small chin]and was dx RSS

from these characteristics.Until then he was dx IUGR.From 3 1/2 I think he

is looking less RSS but that is probably because he is 'filling out' and he

has more hair that makes his forehead less prominent

Joanne

Responses to Kathleen's posts

> >

> >

> > >

> > >

> > >Kathleen,

> > >

> > >Hi, I'm responding to two of your recent posts (Dec

> > >30th to me) and today's re: 1/3 RSS kids sent to

> > Dr.

> > >Harbison not being RSS.

> > >

> > >You asked me in the first one if Dr. Harbison

> > changed

> > >her mind about the RSS diagnosis. (We got the dx

> > from

> > >CHOP when Jake was 3 yrs., 8 mos in Nov. 98 from a

> > >highly regarded Geneticist). We saw Dr. Harbison

> > in

> > >Sept. 99 and she said he does not have RSS. So, we

> > >saw the Geneticist again in Oct. 99 --she said,

> > " yes,

> > >RSS is still the 'working diagnosis'. We saw a

> > >different Pediatric Endocrinologist in Dec. 99 who

> > >said, " you have two good doctors with opposite

> > >opinions: could be RSS, may not be RSS. (He) will

> > >research fully RSS as it relates to growth and GH

> > >treatments and will let us know (his)

> > recommendation

> > >in a few weeks. "

> > >

> > >So, I feel at this point...who the F*#$#%^@#$!

> > knows?

> > >

> > >

> > >I'll write more later about...the MAGIC tape I

> > >watched, the (GREAT) children's photos in the

> > shared

> > >files, and more---but right now, I better get some

> > >sleep!

> > >

> > >

> > >Debbi, Jake's mom

> > >__________________________________________________

> > >