Re: True's photo's posted...the look?

[Guest guest]

Hello Deb,

Im mum to Morven and I feels is if you are telling my story also.

Morven is undiagnosed and you feel a fraud sometimes being on this site

because you dont know if they have RSS or not.

True is absolutley georgeous.

Morven has a dimple at the base of her spine which we have been told is very

common.She has ears at different angles too.She also has a webbed toe.

But when you start looking at everyone (You become a bit obsessed dont

you?)most people have different ears.

I didnt think Morven had a pointy chin or a big forehead until a Doctor

mentioned it>I have a pointy chin and her Dad has a big fore head.

Morven pictures are posted if you wanted to take a look.

Bye for now Mum to Morven 16mths Scotland UK

VisibleWorship@... wrote:

Hey

I posted some pictures of True to see if any of you have time to give your

opinion on 'the look' but I know this is only opinion and doesn't really mean

much. I also posted a picture of his hand. I have his fingers as straight

as possible but if you look at his pinkie you can totally tell that the bottom

joint creases point out and are not straight like the top joint which to me,

looks like a slight curve. I hadn't really laid his hand out like this

before. He does have a prominent forehead but I am not sure he has the

triangular jaw/face.

If you look at the closeups of his face you can see the asymetry...espcially

if you look at placement of the ears...he has two different ears in

different places and the left (his left) of his face is slightly smaller than

the

right. It was more obvious when he was younger or maybe I care more about it

then.

the ones in the burgundy shirt were from today and the one in the stripes is

from a few months back but shows his body assymetry I think.

any opinions welcome...he's adorable no matter what, so nothing will bother

me!

here's a link, if it works...otherwise its under TRUE.

_Click here: RSS-Support : Photos_

(http://health.ph.groups.yahoo.com/group/RSS-Support/photos/browse/9181)

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo, with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

[Guest guest]

thanks...I was beginning to think that no one saw this post!

Well, I will feel better when the geneticist sees us. The endo was

presenting our case to his colleagues today and tried to call me but I dind't

get the

phone in time and of course, now can't get in touch with him...uggh!

We shall see how it all pans out...but at least I can help with the hypoG

issues here.

thanks a bunch!

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo, with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

[Guest guest]

Hi. I love the pictures, they are a good looking bunch and True is

adorable. I don't think he has the 'look' but I also dont' think my

youngest has the 'look' and her geneticist thinks RSS. Here is a

quick rundown my daughters. Autumn is 2 and was diagnosed RSS as an

infant. She was IUGR and her growth is below the curve and weight

but her head circ is 50%. The geneticist thinks she has more of the

classic look, bossed forehead, triangularity, bent 5th finger, high

hairline...and a few others I just can't htink of . She has had a lot

of weight issues and athsma and a lot of hospitalizations, and she

got a g-tube a few mos ago, so she is doing much better now. Then I

got pregnant with my second daughter Summer(4th child, I have 2 older

sons). She also ended up IUGR and now at 7 mos has no catch up

growth except her head also which has gone from quite a bit below

3rd% at birth to about 10-25% and growing. She doesn't have

the 'look' but has 5th fingers curved, blue sclera, reflux (was

hospitalized for it and malacia which caused her breathing problems

and she would turn blue a lot), fat assymetry but no length assymetry

noted...and the doctor said she is not entirely consistant with RSS

like they feel Autumn is, but it is still what they think she has

because it can present in so many different ways. Now I don't know

what to think because there is no real test for it. she is doing

well now though and holding her own, thank goodness. She is gaining

weight and growing, just all below the 3rd %! ...but consistant so

far!

I also have an older son who was born 7 lbs 11 oz and by 1 yr was

only 18 lbs and 28.5 inches, and by 2.5 yrs was only 23 lbs. He is

now 7 and has been on an appetite stimulant for mos to help him

gain. He has many sensory issues, is in OT for them and has growth

issues and is at or right below 3% for height adn weight (with

appetite stimulant). WE are still not quite sure why he stopped

growing well. His dad is 6 1 and I am 5 3.5 so he is far far far

below is predicted height. They are now thinking maybe low GH due to

some tests so more tests are being run. He is not RSS or SGA, so it

is very different from the girls, yet similar because of

weight/height issues.

I am at the point where all I want are answers. I was very healthy,

ate well, no real problems with the pregnancy except the IUGR for

unknow causes for my daughters. It is thought to have been genetic

IUGR, they were meant to be small, but it is not a fact.

Good luck with everything!

r mom to Autumn RSS, Summer SGA poss RSs, Ocean, Skye

> Hey

>

> I posted some pictures of True to see if any of you have time to

give your

> opinion on 'the look' but I know this is only opinion and doesn't

really mean

> much. I also posted a picture of his hand. I have his fingers as

straight

> as possible but if you look at his pinkie you can totally tell that

the bottom

> joint creases point out and are not straight like the top joint

which to me,

> looks like a slight curve. I hadn't really laid his hand out like

this

> before. He does have a prominent forehead but I am not sure he has

the

> triangular jaw/face.

>

> If you look at the closeups of his face you can see the

asymetry...espcially

> if you look at placement of the ears...he has two different ears

in

> different places and the left (his left) of his face is slightly

smaller than the

> right. It was more obvious when he was younger or maybe I care

more about it

> then.

>

> the ones in the burgundy shirt were from today and the one in the

stripes is

> from a few months back but shows his body assymetry I think.

>

> any opinions welcome...he's adorable no matter what, so nothing

will bother

> me!

> here's a link, if it works...otherwise its under TRUE.

>

> _Click here: RSS-Support : Photos_

> (http://health.ph.groups.yahoo.com/group/RSS-

Support/photos/browse/9181)

>

>

> deb...mom to four fab adopted kiddos... (07.04.96-05.26.03)

with

> Mitochondrial Myopathy...G, 6, with High Functioning Autism,

Hypoglycemia and

> Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and

True 1yo, with

> Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed

GI problems

> plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice,

Oats and

> Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12

years to F--one

> swell guy!_ www.caringbridge.org/tn/wells/_

> (http://www.caringbridge.org/tn/wells/)

(http://www.lifeofloveproject.org/)

>

>

>

[Guest guest]

Hi Deb,

I looked at True's photos too - what a cutie! His smile goes on forever! I

am not a good judge of " the look " - hopefully you will get some other comments,

from maybe Jodi Z. She has helped Dr. H. at the convention alot & seems to be

able to judge " the look " in alot of kids.

in Alasks

RSS-Support wrote:

From: VisibleWorship@...

Subject: Re: Re: True's photo's posted...the look?

thanks...I was beginning to think that no one saw this post!

Well, I will feel better when the geneticist sees us. The endo was

presenting our case to his colleagues today and tried to call me but I dind't

get the

phone in time and of course, now can't get in touch with him...uggh!

We shall see how it all pans out...but at least I can help with the hypoG

issues here.

thanks a bunch!

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo, with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)

__________________________________________________

[Guest guest]

true is a cutie!!! love the pics!!

jodie c