Re: New Member Introduction

[Guest guest]

I wish I had more time to look this up. Has any geneticist talked

to you about a disorder in which there are heart/lung abnormalities,

along with failure to thrive. HELP - can anyone remember the name?

Our friend's daughter has it. I will be back in two weeks and

running out for the airport now. Has Noah been evaluated by a

geneticist at a children's hospital? Welcome! Hope to learn more

about Noah when I get back. Salem

> Hi,

>

> I am new to the list. My son Noah was born 2/11/99. He hasn't

been

> diagnosed with RSS but it appears he does have many of the

symptoms.

>

> He was born with heart and lung defects that were diagnosed as

scimitar

> syndrome. He had an ASD, VSD, PDA and an underdeveloped right

lung. He had

> open heart surgery at 6 weeks of age, his heart was repaired and

they

> removed his right lung. He was 6 pounds 5 ounces when he was born.

>

> He was born right at 40 weeks. No one knows why he was small, my

first

> three children were 8 pounds, 8 pounds 8 ounces and 7 pounds 4

ounces. My

> fifth child was 9 pounds 14 ounces.

>

> Noah has the curved pinkies, and hypospadius with chordee. He has

a funky v

> at his tailbone with deep indentations.

>

> He was gaining weight steadily until his 3rd round of shots which

included

> the 3rd dose of DPTH and first dose of Hep B. He had several

problems begin

> after the shots, he screamed on and off for two days, stopped

eating, lost

> weight than stopped gaining, basically just stopped growing for

almost 2

> years. He began to sweat beneath his head as he slept and had

respiratory

> problems. All which started right after the shots.

>

> He is now 6 years old and still very small for his age, weighs

about 30

> pounds and is about 40 inches tall. He seems fine in every other

way, very

> bright, doing well in school (but has a tendency to talk when he

should be

> working), he met most of his developmental milestones at the

normal age.

>

> I don't know if he has RSS, but his symptoms make me think he

might, so I

> thought I would join this list and see if he is displaying some of

the same

> symptoms as others who have been diagnosed.

>

> Looking forward to meeting everyone,

>

> and Noah

[Guest guest]

I am just home at lunch BE WE HAVE TO TALK!!

I haven't even finished reading your email yet and I had to reply.

My son, (13 yrs old in a couple of weeks) is RSS however, he was 5 lbs 3 oz

when born (I smoked when pregnant and so that explained the low birth

weight) but after his 3rd round of DPT shots he STOPPED GROWING.

I had given up on that part of the problem because NO one has had this same

problem. I will email you more off list after work today. I live in Canada

(Toronto). We have to compare notes.

Debby

New Member Introduction

> Hi,

>

> I am new to the list. My son Noah was born 2/11/99. He hasn't been

> diagnosed with RSS but it appears he does have many of the symptoms.

>

> He was born with heart and lung defects that were diagnosed as scimitar

> syndrome. He had an ASD, VSD, PDA and an underdeveloped right lung. He

had

> open heart surgery at 6 weeks of age, his heart was repaired and they

> removed his right lung. He was 6 pounds 5 ounces when he was born.

>

> He was born right at 40 weeks. No one knows why he was small, my first

> three children were 8 pounds, 8 pounds 8 ounces and 7 pounds 4 ounces. My

> fifth child was 9 pounds 14 ounces.

>

> Noah has the curved pinkies, and hypospadius with chordee. He has a funky

v

> at his tailbone with deep indentations.

>

> He was gaining weight steadily until his 3rd round of shots which included

> the 3rd dose of DPTH and first dose of Hep B. He had several problems

begin

> after the shots, he screamed on and off for two days, stopped eating, lost

> weight than stopped gaining, basically just stopped growing for almost 2

> years. He began to sweat beneath his head as he slept and had

respiratory

> problems. All which started right after the shots.

>

> He is now 6 years old and still very small for his age, weighs about 30

> pounds and is about 40 inches tall. He seems fine in every other way,

very

> bright, doing well in school (but has a tendency to talk when he should be

> working), he met most of his developmental milestones at the normal age.

>

> I don't know if he has RSS, but his symptoms make me think he might, so I

> thought I would join this list and see if he is displaying some of the

same

> symptoms as others who have been diagnosed.

>

> Looking forward to meeting everyone,

>

> and Noah

>

>

>

>

>

>

>

[Guest guest]

Hello and welcome!

6lbs is not really consider too small. My oldest

daughter weighed 6lbs 6ozs when she was born. She

quickly caught up and passed other babies though.

The not eating and other problems that your child is

having would be a concern though and should be checked

out.

Keep us posted and let us know of anything that

develops.

--- parissun shine wrote:

> Hi,

>

> I am new to the list. My son Noah was born 2/11/99.

> He hasn't been

> diagnosed with RSS but it appears he does have many

> of the symptoms.

>

> He was born with heart and lung defects that were

> diagnosed as scimitar

> syndrome. He had an ASD, VSD, PDA and an

> underdeveloped right lung. He had

> open heart surgery at 6 weeks of age, his heart was

> repaired and they

> removed his right lung. He was 6 pounds 5 ounces

> when he was born.

>

> He was born right at 40 weeks. No one knows why he

> was small, my first

> three children were 8 pounds, 8 pounds 8 ounces and

> 7 pounds 4 ounces. My

> fifth child was 9 pounds 14 ounces.

>

> Noah has the curved pinkies, and hypospadius with

> chordee. He has a funky v

> at his tailbone with deep indentations.

>

> He was gaining weight steadily until his 3rd round

> of shots which included

> the 3rd dose of DPTH and first dose of Hep B. He

> had several problems begin

> after the shots, he screamed on and off for two

> days, stopped eating, lost

> weight than stopped gaining, basically just stopped

> growing for almost 2

> years. He began to sweat beneath his head as he

> slept and had respiratory

> problems. All which started right after the shots.

>

> He is now 6 years old and still very small for his

> age, weighs about 30

> pounds and is about 40 inches tall. He seems fine

> in every other way, very

> bright, doing well in school (but has a tendency to

> talk when he should be

> working), he met most of his developmental

> milestones at the normal age.

>

> I don't know if he has RSS, but his symptoms make me

> think he might, so I

> thought I would join this list and see if he is

> displaying some of the same

> symptoms as others who have been diagnosed.

>

> Looking forward to meeting everyone,

>

> and Noah

>

>

>

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

While 6 pounds may not seem that small to most, it is considered small

if you have had other children who were larger. Max was 6 pounds at

birth, but the doctor had expected him to be about 9 pounds based on

the ultrasounds and my daughter's birthweight. She was 7lbs. 9oz.

That was only the beginning of years of medical " stuff. "

Jodi Z

[Guest guest]

this was the same thing with christopher, he was 5lbs 10oz & 18 1/2 " at

birth(expected to be 8 1/2lbs) older brother was 9lbs 4oz 22 1/2 " and

younger brother 8lbs 6oz and 22 1/2 " . so there was a big difference.

jodie c

> While 6 pounds may not seem that small to most, it is considered

small

> if you have had other children who were larger. Max was 6 pounds at

> birth, but the doctor had expected him to be about 9 pounds based on

> the ultrasounds and my daughter's birthweight. She was 7lbs. 9oz.

> That was only the beginning of years of medical " stuff. "

>

> Jodi Z

[Guest guest]

Jenn,

I'm not sure what is in your mind but any time there is a failure to thrive the

first thing to check is the heart. I found that out way after our failure to

thrive diagnosis which was at 9 months old and it wasn't until was 3 1/2

and a murmur was detected (finally a ped who calmed her enough to keep quiet).

It turned out she had a large ASD hole which she had open heart surgery to

repair at 3.11 years old.

B

5 1/2 and Kelli 3

Brock wrote:

I wish I had more time to look this up. Has any geneticist talked

to you about a disorder in which there are heart/lung abnormalities,

along with failure to thrive. HELP - can anyone remember the name?

Our friend's daughter has it. I will be back in two weeks and

running out for the airport now. Has Noah been evaluated by a

geneticist at a children's hospital? Welcome! Hope to learn more

about Noah when I get back. Salem

> Hi,

>

> I am new to the list. My son Noah was born 2/11/99. He hasn't

been

> diagnosed with RSS but it appears he does have many of the

symptoms.

>

> He was born with heart and lung defects that were diagnosed as

scimitar

> syndrome. He had an ASD, VSD, PDA and an underdeveloped right

lung. He had

> open heart surgery at 6 weeks of age, his heart was repaired and

they

> removed his right lung. He was 6 pounds 5 ounces when he was born.

>

> He was born right at 40 weeks. No one knows why he was small, my

first

> three children were 8 pounds, 8 pounds 8 ounces and 7 pounds 4

ounces. My

> fifth child was 9 pounds 14 ounces.

>

> Noah has the curved pinkies, and hypospadius with chordee. He has

a funky v

> at his tailbone with deep indentations.

>

> He was gaining weight steadily until his 3rd round of shots which

included

> the 3rd dose of DPTH and first dose of Hep B. He had several

problems begin

> after the shots, he screamed on and off for two days, stopped

eating, lost

> weight than stopped gaining, basically just stopped growing for

almost 2

> years. He began to sweat beneath his head as he slept and had

respiratory

> problems. All which started right after the shots.

>

> He is now 6 years old and still very small for his age, weighs

about 30

> pounds and is about 40 inches tall. He seems fine in every other

way, very

> bright, doing well in school (but has a tendency to talk when he

should be

> working), he met most of his developmental milestones at the

normal age.

>

> I don't know if he has RSS, but his symptoms make me think he

might, so I

> thought I would join this list and see if he is displaying some of

the same

> symptoms as others who have been diagnosed.

>

> Looking forward to meeting everyone,

>

> and Noah