Question regarding appointment w/ Dr. H. at the Convention

[Guest guest]

We were fortunate in that Dr. H. could squeeze us in Wednesday night

(the night before we flew away for 10 days).

Dr. Harbison was convinced that does NOT have RSS. I asked

if she knew what he had and she said SGA - no surprise there, just

nothing more specific. It was kind of a whirlwind visit and we were

trying to remember afterwards what exactly she saw that convinced

her and about all we can remember are two points:

1) he has decent muscle mass, just no fat (in particular she was

excited by his " big " hamstrings). We're thinking that perhaps this

was the main reason? I guess the RSS kids have no fat and little

muscle mass.

2) his face doesn't fit her experience of RSS. Yes, he has the

triangular face, but he has more of a wizened gnome look, not the

more of a " sprite " look (pixie?). Again, were not sure if this was

a major reason for " excluding " him from RSS.

Anyway, we were wondering if Dr. Harbison writes any basic summary

of the visits that we could obtain. We don't expect that she would

be able to remember much about any baby in particular after going

through her daunting marathon sessions unless it was written at the

time.

She also recommended we do an immediate g-tube with the Nissan

fundoplication which our ped. endo. doctor (Dr.Dumont of Loyola

Univ. Hosp - yes, he apparently spoke at Magic) here in Chicago

apparently objects to (g-tube, not sure if he objects to the fund.)

But we only heard second hand from him through his nurse since we

were playing phone tag from Virginia. He apparently wants to ng him

for another month and then try other strategies for weaning him off

the ng tube (not sure what those are). I'll call on Monday and see

what's going on there.

My impression from reading this group is that people go to Dr.

Harbison to get her opinion about g tubes since she doesn't rush

babies into them unless they really need it. Of course, with two

Magic associated doctors (Harbison and Dumont) giving opposing

opinions, it's somewhat confusing. I'm guessing Dr. H's reason for

saying an immediate g-tube is based on his weight/height ratio - 13

lbs even and 26 1/4 " at 8.5 months (birth wt 5 lb 5 oz, 19 " )

She also noted that his heart beat comes through really strong

through his chest and that we should follow up. We were going to

anyway since I've always been suspicious that we've never had a

cardiologist look/listen to his heart. The heart seems to be at the

center of so many birth defects and he seems to have a number (blue

sclera (sp?), high arched mouth, prominent eyes, low set-prominent

ears, triangular face, sternum cavitatum). Anyway, I was reading a

report from his hospital stay (ph probe and ng tube placement) and

noticed a radiologist made a comment about a prominent cardiothymic

shadow. So I wanted to follow up on that anyway.

Anyway, enough blabbing.

Cheers,

Steve

[Guest guest]

Hi Steve:-)

Janelle was suspected of having a heart issue that was proved false while at

the hospital in the PICU with Dr Quinnonis (sp) at Hinsdale. While I was

there I learned of an excellent pedo cardiologist out of I think UIC. Dr " Q "

in my opinion had excellent diagnostic skills. I think he has a pediatric

cardiology back ground. I do not know anything about the heart specialist at

Loyola. I can ask the person who told me about this when we are both back

from vacation if you would like.

Take care

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

Reply-To: RSS-Support

Date: Sun, 28 Jul 2002 21:33:30 -0000

To: RSS-Support

Subject: Question regarding appointment w/ Dr. H. at the

Convention

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Sun, 28 Jul 2002 16:33:25 -0500

We were fortunate in that Dr. H. could squeeze us in Wednesday night

(the night before we flew away for 10 days).

Dr. Harbison was convinced that does NOT have RSS. I asked

if she knew what he had and she said SGA - no surprise there, just

nothing more specific. It was kind of a whirlwind visit and we were

trying to remember afterwards what exactly she saw that convinced

her and about all we can remember are two points:

1) he has decent muscle mass, just no fat (in particular she was

excited by his " big " hamstrings). We're thinking that perhaps this

was the main reason? I guess the RSS kids have no fat and little

muscle mass.

2) his face doesn't fit her experience of RSS. Yes, he has the

triangular face, but he has more of a wizened gnome look, not the

more of a " sprite " look (pixie?). Again, were not sure if this was

a major reason for " excluding " him from RSS.

Anyway, we were wondering if Dr. Harbison writes any basic summary

of the visits that we could obtain. We don't expect that she would

be able to remember much about any baby in particular after going

through her daunting marathon sessions unless it was written at the

time.

She also recommended we do an immediate g-tube with the Nissan

fundoplication which our ped. endo. doctor (Dr.Dumont of Loyola

Univ. Hosp - yes, he apparently spoke at Magic) here in Chicago

apparently objects to (g-tube, not sure if he objects to the fund.)

But we only heard second hand from him through his nurse since we

were playing phone tag from Virginia. He apparently wants to ng him

for another month and then try other strategies for weaning him off

the ng tube (not sure what those are). I'll call on Monday and see

what's going on there.

My impression from reading this group is that people go to Dr.

Harbison to get her opinion about g tubes since she doesn't rush

babies into them unless they really need it. Of course, with two

Magic associated doctors (Harbison and Dumont) giving opposing

opinions, it's somewhat confusing. I'm guessing Dr. H's reason for

saying an immediate g-tube is based on his weight/height ratio - 13

lbs even and 26 1/4 " at 8.5 months (birth wt 5 lb 5 oz, 19 " )

She also noted that his heart beat comes through really strong

through his chest and that we should follow up. We were going to

anyway since I've always been suspicious that we've never had a

cardiologist look/listen to his heart. The heart seems to be at the

center of so many birth defects and he seems to have a number (blue

sclera (sp?), high arched mouth, prominent eyes, low set-prominent

ears, triangular face, sternum cavitatum). Anyway, I was reading a

report from his hospital stay (ph probe and ng tube placement) and

noticed a radiologist made a comment about a prominent cardiothymic

shadow. So I wanted to follow up on that anyway.

Anyway, enough blabbing.

Cheers,

Steve

[Guest guest]

Hi Steve:-)

Janelle was suspected of having a heart issue that was proved false while at

the hospital in the PICU with Dr Quinnonis (sp) at Hinsdale. While I was

there I learned of an excellent pedo cardiologist out of I think UIC. Dr " Q "

in my opinion had excellent diagnostic skills. I think he has a pediatric

cardiology back ground. I do not know anything about the heart specialist at

Loyola. I can ask the person who told me about this when we are both back

from vacation if you would like.

Take care

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

Reply-To: RSS-Support

Date: Sun, 28 Jul 2002 21:33:30 -0000

To: RSS-Support

Subject: Question regarding appointment w/ Dr. H. at the

Convention

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Sun, 28 Jul 2002 16:33:25 -0500

We were fortunate in that Dr. H. could squeeze us in Wednesday night

(the night before we flew away for 10 days).

Dr. Harbison was convinced that does NOT have RSS. I asked

if she knew what he had and she said SGA - no surprise there, just

nothing more specific. It was kind of a whirlwind visit and we were

trying to remember afterwards what exactly she saw that convinced

her and about all we can remember are two points:

1) he has decent muscle mass, just no fat (in particular she was

excited by his " big " hamstrings). We're thinking that perhaps this

was the main reason? I guess the RSS kids have no fat and little

muscle mass.

2) his face doesn't fit her experience of RSS. Yes, he has the

triangular face, but he has more of a wizened gnome look, not the

more of a " sprite " look (pixie?). Again, were not sure if this was

a major reason for " excluding " him from RSS.

Anyway, we were wondering if Dr. Harbison writes any basic summary

of the visits that we could obtain. We don't expect that she would

be able to remember much about any baby in particular after going

through her daunting marathon sessions unless it was written at the

time.

She also recommended we do an immediate g-tube with the Nissan

fundoplication which our ped. endo. doctor (Dr.Dumont of Loyola

Univ. Hosp - yes, he apparently spoke at Magic) here in Chicago

apparently objects to (g-tube, not sure if he objects to the fund.)

But we only heard second hand from him through his nurse since we

were playing phone tag from Virginia. He apparently wants to ng him

for another month and then try other strategies for weaning him off

the ng tube (not sure what those are). I'll call on Monday and see

what's going on there.

My impression from reading this group is that people go to Dr.

Harbison to get her opinion about g tubes since she doesn't rush

babies into them unless they really need it. Of course, with two

Magic associated doctors (Harbison and Dumont) giving opposing

opinions, it's somewhat confusing. I'm guessing Dr. H's reason for

saying an immediate g-tube is based on his weight/height ratio - 13

lbs even and 26 1/4 " at 8.5 months (birth wt 5 lb 5 oz, 19 " )

She also noted that his heart beat comes through really strong

through his chest and that we should follow up. We were going to

anyway since I've always been suspicious that we've never had a

cardiologist look/listen to his heart. The heart seems to be at the

center of so many birth defects and he seems to have a number (blue

sclera (sp?), high arched mouth, prominent eyes, low set-prominent

ears, triangular face, sternum cavitatum). Anyway, I was reading a

report from his hospital stay (ph probe and ng tube placement) and

noticed a radiologist made a comment about a prominent cardiothymic

shadow. So I wanted to follow up on that anyway.

Anyway, enough blabbing.

Cheers,

Steve

[Guest guest]

Hi Steve:-)

Janelle was suspected of having a heart issue that was proved false while at

the hospital in the PICU with Dr Quinnonis (sp) at Hinsdale. While I was

there I learned of an excellent pedo cardiologist out of I think UIC. Dr " Q "

in my opinion had excellent diagnostic skills. I think he has a pediatric

cardiology back ground. I do not know anything about the heart specialist at

Loyola. I can ask the person who told me about this when we are both back

from vacation if you would like.

Take care

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

Reply-To: RSS-Support

Date: Sun, 28 Jul 2002 21:33:30 -0000

To: RSS-Support

Subject: Question regarding appointment w/ Dr. H. at the

Convention

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Sun, 28 Jul 2002 16:33:25 -0500

We were fortunate in that Dr. H. could squeeze us in Wednesday night

(the night before we flew away for 10 days).

Dr. Harbison was convinced that does NOT have RSS. I asked

if she knew what he had and she said SGA - no surprise there, just

nothing more specific. It was kind of a whirlwind visit and we were

trying to remember afterwards what exactly she saw that convinced

her and about all we can remember are two points:

1) he has decent muscle mass, just no fat (in particular she was

excited by his " big " hamstrings). We're thinking that perhaps this

was the main reason? I guess the RSS kids have no fat and little

muscle mass.

2) his face doesn't fit her experience of RSS. Yes, he has the

triangular face, but he has more of a wizened gnome look, not the

more of a " sprite " look (pixie?). Again, were not sure if this was

a major reason for " excluding " him from RSS.

Anyway, we were wondering if Dr. Harbison writes any basic summary

of the visits that we could obtain. We don't expect that she would

be able to remember much about any baby in particular after going

through her daunting marathon sessions unless it was written at the

time.

She also recommended we do an immediate g-tube with the Nissan

fundoplication which our ped. endo. doctor (Dr.Dumont of Loyola

Univ. Hosp - yes, he apparently spoke at Magic) here in Chicago

apparently objects to (g-tube, not sure if he objects to the fund.)

But we only heard second hand from him through his nurse since we

were playing phone tag from Virginia. He apparently wants to ng him

for another month and then try other strategies for weaning him off

the ng tube (not sure what those are). I'll call on Monday and see

what's going on there.

My impression from reading this group is that people go to Dr.

Harbison to get her opinion about g tubes since she doesn't rush

babies into them unless they really need it. Of course, with two

Magic associated doctors (Harbison and Dumont) giving opposing

opinions, it's somewhat confusing. I'm guessing Dr. H's reason for

saying an immediate g-tube is based on his weight/height ratio - 13

lbs even and 26 1/4 " at 8.5 months (birth wt 5 lb 5 oz, 19 " )

She also noted that his heart beat comes through really strong

through his chest and that we should follow up. We were going to

anyway since I've always been suspicious that we've never had a

cardiologist look/listen to his heart. The heart seems to be at the

center of so many birth defects and he seems to have a number (blue

sclera (sp?), high arched mouth, prominent eyes, low set-prominent

ears, triangular face, sternum cavitatum). Anyway, I was reading a

report from his hospital stay (ph probe and ng tube placement) and

noticed a radiologist made a comment about a prominent cardiothymic

shadow. So I wanted to follow up on that anyway.

Anyway, enough blabbing.

Cheers,

Steve

[Guest guest]

Steve,

We are a current patient of Dr. H's and unfortunately have had a very

difficult time getting a written report of our son's visits with

her. We needed them for insurance purposes and finally had to settle

for a photocopy of his medical file, not an official written report,

but it still was useful to us.

Also, our experience with Dr. H is she did not rush to have a g-tube

placed in our son. He did eventually get one, put that was after 15

months of being her patient. The reason for the tube was too many

hypoglycemic episodes and she pretty much demanded he get one. It

worked out really well, as he has gained weight and his number of

hypoglycemic episodes have dropped dramatically.

Good luck,

Alison

> Hi Steve:-)

>

> Janelle was suspected of having a heart issue that was proved false

while at

> the hospital in the PICU with Dr Quinnonis (sp) at Hinsdale. While

I was

> there I learned of an excellent pedo cardiologist out of I think

UIC. Dr " Q "

> in my opinion had excellent diagnostic skills. I think he has a

pediatric

> cardiology back ground. I do not know anything about the heart

specialist at

> Loyola. I can ask the person who told me about this when we are

both back

> from vacation if you would like.

>

> Take care

> --

> Jovanovich

> ****Please note - our NEW e-mail address

> laura@b...

>

> From: " trailss "

> Reply-To: RSS-Support@y...

> Date: Sun, 28 Jul 2002 21:33:30 -0000

> To: RSS-Support@y...

> Subject: Question regarding appointment w/ Dr. H. at

the

> Convention

> Resent-From: laura@b...

> Resent-To: bugwilder@a...

> Resent-Date: Sun, 28 Jul 2002 16:33:25 -0500

>

>

> We were fortunate in that Dr. H. could squeeze us in Wednesday night

> (the night before we flew away for 10 days).

>

> Dr. Harbison was convinced that does NOT have RSS. I asked

> if she knew what he had and she said SGA - no surprise there, just

> nothing more specific. It was kind of a whirlwind visit and we were

> trying to remember afterwards what exactly she saw that convinced

> her and about all we can remember are two points:

>

> 1) he has decent muscle mass, just no fat (in particular she was

> excited by his " big " hamstrings). We're thinking that perhaps this

> was the main reason? I guess the RSS kids have no fat and little

> muscle mass.

>

> 2) his face doesn't fit her experience of RSS. Yes, he has the

> triangular face, but he has more of a wizened gnome look, not the

> more of a " sprite " look (pixie?). Again, were not sure if this was

> a major reason for " excluding " him from RSS.

>

> Anyway, we were wondering if Dr. Harbison writes any basic summary

> of the visits that we could obtain. We don't expect that she would

> be able to remember much about any baby in particular after going

> through her daunting marathon sessions unless it was written at the

> time.

>

> She also recommended we do an immediate g-tube with the Nissan

> fundoplication which our ped. endo. doctor (Dr.Dumont of Loyola

> Univ. Hosp - yes, he apparently spoke at Magic) here in Chicago

> apparently objects to (g-tube, not sure if he objects to the fund.)

> But we only heard second hand from him through his nurse since we

> were playing phone tag from Virginia. He apparently wants to ng him

> for another month and then try other strategies for weaning him off

> the ng tube (not sure what those are). I'll call on Monday and see

> what's going on there.

>

> My impression from reading this group is that people go to Dr.

> Harbison to get her opinion about g tubes since she doesn't rush

> babies into them unless they really need it. Of course, with two

> Magic associated doctors (Harbison and Dumont) giving opposing

> opinions, it's somewhat confusing. I'm guessing Dr. H's reason for

> saying an immediate g-tube is based on his weight/height ratio - 13

> lbs even and 26 1/4 " at 8.5 months (birth wt 5 lb 5 oz, 19 " )

>

> She also noted that his heart beat comes through really strong

> through his chest and that we should follow up. We were going to

> anyway since I've always been suspicious that we've never had a

> cardiologist look/listen to his heart. The heart seems to be at the

> center of so many birth defects and he seems to have a number (blue

> sclera (sp?), high arched mouth, prominent eyes, low set-prominent

> ears, triangular face, sternum cavitatum). Anyway, I was reading a

> report from his hospital stay (ph probe and ng tube placement) and

> noticed a radiologist made a comment about a prominent cardiothymic

> shadow. So I wanted to follow up on that anyway.

>

>

> Anyway, enough blabbing.

>

> Cheers,

>

> Steve

>

>

>

>

[Guest guest]

Steve,

We are a current patient of Dr. H's and unfortunately have had a very

difficult time getting a written report of our son's visits with

her. We needed them for insurance purposes and finally had to settle

for a photocopy of his medical file, not an official written report,

but it still was useful to us.

Also, our experience with Dr. H is she did not rush to have a g-tube

placed in our son. He did eventually get one, put that was after 15

months of being her patient. The reason for the tube was too many

hypoglycemic episodes and she pretty much demanded he get one. It

worked out really well, as he has gained weight and his number of

hypoglycemic episodes have dropped dramatically.

Good luck,

Alison

> Hi Steve:-)

>

> Janelle was suspected of having a heart issue that was proved false

while at

> the hospital in the PICU with Dr Quinnonis (sp) at Hinsdale. While

I was

> there I learned of an excellent pedo cardiologist out of I think

UIC. Dr " Q "

> in my opinion had excellent diagnostic skills. I think he has a

pediatric

> cardiology back ground. I do not know anything about the heart

specialist at

> Loyola. I can ask the person who told me about this when we are

both back

> from vacation if you would like.

>

> Take care

> --

> Jovanovich

> ****Please note - our NEW e-mail address

> laura@b...

>

> From: " trailss "

> Reply-To: RSS-Support@y...

> Date: Sun, 28 Jul 2002 21:33:30 -0000

> To: RSS-Support@y...

> Subject: Question regarding appointment w/ Dr. H. at

the

> Convention

> Resent-From: laura@b...

> Resent-To: bugwilder@a...

> Resent-Date: Sun, 28 Jul 2002 16:33:25 -0500

>

>

> We were fortunate in that Dr. H. could squeeze us in Wednesday night

> (the night before we flew away for 10 days).

>

> Dr. Harbison was convinced that does NOT have RSS. I asked

> if she knew what he had and she said SGA - no surprise there, just

> nothing more specific. It was kind of a whirlwind visit and we were

> trying to remember afterwards what exactly she saw that convinced

> her and about all we can remember are two points:

>

> 1) he has decent muscle mass, just no fat (in particular she was

> excited by his " big " hamstrings). We're thinking that perhaps this

> was the main reason? I guess the RSS kids have no fat and little

> muscle mass.

>

> 2) his face doesn't fit her experience of RSS. Yes, he has the

> triangular face, but he has more of a wizened gnome look, not the

> more of a " sprite " look (pixie?). Again, were not sure if this was

> a major reason for " excluding " him from RSS.

>

> Anyway, we were wondering if Dr. Harbison writes any basic summary

> of the visits that we could obtain. We don't expect that she would

> be able to remember much about any baby in particular after going

> through her daunting marathon sessions unless it was written at the

> time.

>

> She also recommended we do an immediate g-tube with the Nissan

> fundoplication which our ped. endo. doctor (Dr.Dumont of Loyola

> Univ. Hosp - yes, he apparently spoke at Magic) here in Chicago

> apparently objects to (g-tube, not sure if he objects to the fund.)

> But we only heard second hand from him through his nurse since we

> were playing phone tag from Virginia. He apparently wants to ng him

> for another month and then try other strategies for weaning him off

> the ng tube (not sure what those are). I'll call on Monday and see

> what's going on there.

>

> My impression from reading this group is that people go to Dr.

> Harbison to get her opinion about g tubes since she doesn't rush

> babies into them unless they really need it. Of course, with two

> Magic associated doctors (Harbison and Dumont) giving opposing

> opinions, it's somewhat confusing. I'm guessing Dr. H's reason for

> saying an immediate g-tube is based on his weight/height ratio - 13

> lbs even and 26 1/4 " at 8.5 months (birth wt 5 lb 5 oz, 19 " )

>

> She also noted that his heart beat comes through really strong

> through his chest and that we should follow up. We were going to

> anyway since I've always been suspicious that we've never had a

> cardiologist look/listen to his heart. The heart seems to be at the

> center of so many birth defects and he seems to have a number (blue

> sclera (sp?), high arched mouth, prominent eyes, low set-prominent

> ears, triangular face, sternum cavitatum). Anyway, I was reading a

> report from his hospital stay (ph probe and ng tube placement) and

> noticed a radiologist made a comment about a prominent cardiothymic

> shadow. So I wanted to follow up on that anyway.

>

>

> Anyway, enough blabbing.

>

> Cheers,

>

> Steve

>

>

>

>

[Guest guest]

Steve,

We are a current patient of Dr. H's and unfortunately have had a very

difficult time getting a written report of our son's visits with

her. We needed them for insurance purposes and finally had to settle

for a photocopy of his medical file, not an official written report,

but it still was useful to us.

Also, our experience with Dr. H is she did not rush to have a g-tube

placed in our son. He did eventually get one, put that was after 15

months of being her patient. The reason for the tube was too many

hypoglycemic episodes and she pretty much demanded he get one. It

worked out really well, as he has gained weight and his number of

hypoglycemic episodes have dropped dramatically.

Good luck,

Alison

> Hi Steve:-)

>

> Janelle was suspected of having a heart issue that was proved false

while at

> the hospital in the PICU with Dr Quinnonis (sp) at Hinsdale. While

I was

> there I learned of an excellent pedo cardiologist out of I think

UIC. Dr " Q "

> in my opinion had excellent diagnostic skills. I think he has a

pediatric

> cardiology back ground. I do not know anything about the heart

specialist at

> Loyola. I can ask the person who told me about this when we are

both back

> from vacation if you would like.

>

> Take care

> --

> Jovanovich

> ****Please note - our NEW e-mail address

> laura@b...

>

> From: " trailss "

> Reply-To: RSS-Support@y...

> Date: Sun, 28 Jul 2002 21:33:30 -0000

> To: RSS-Support@y...

> Subject: Question regarding appointment w/ Dr. H. at

the

> Convention

> Resent-From: laura@b...

> Resent-To: bugwilder@a...

> Resent-Date: Sun, 28 Jul 2002 16:33:25 -0500

>

>

> We were fortunate in that Dr. H. could squeeze us in Wednesday night

> (the night before we flew away for 10 days).

>

> Dr. Harbison was convinced that does NOT have RSS. I asked

> if she knew what he had and she said SGA - no surprise there, just

> nothing more specific. It was kind of a whirlwind visit and we were

> trying to remember afterwards what exactly she saw that convinced

> her and about all we can remember are two points:

>

> 1) he has decent muscle mass, just no fat (in particular she was

> excited by his " big " hamstrings). We're thinking that perhaps this

> was the main reason? I guess the RSS kids have no fat and little

> muscle mass.

>

> 2) his face doesn't fit her experience of RSS. Yes, he has the

> triangular face, but he has more of a wizened gnome look, not the

> more of a " sprite " look (pixie?). Again, were not sure if this was

> a major reason for " excluding " him from RSS.

>

> Anyway, we were wondering if Dr. Harbison writes any basic summary

> of the visits that we could obtain. We don't expect that she would

> be able to remember much about any baby in particular after going

> through her daunting marathon sessions unless it was written at the

> time.

>

> She also recommended we do an immediate g-tube with the Nissan

> fundoplication which our ped. endo. doctor (Dr.Dumont of Loyola

> Univ. Hosp - yes, he apparently spoke at Magic) here in Chicago

> apparently objects to (g-tube, not sure if he objects to the fund.)

> But we only heard second hand from him through his nurse since we

> were playing phone tag from Virginia. He apparently wants to ng him

> for another month and then try other strategies for weaning him off

> the ng tube (not sure what those are). I'll call on Monday and see

> what's going on there.

>

> My impression from reading this group is that people go to Dr.

> Harbison to get her opinion about g tubes since she doesn't rush

> babies into them unless they really need it. Of course, with two

> Magic associated doctors (Harbison and Dumont) giving opposing

> opinions, it's somewhat confusing. I'm guessing Dr. H's reason for

> saying an immediate g-tube is based on his weight/height ratio - 13

> lbs even and 26 1/4 " at 8.5 months (birth wt 5 lb 5 oz, 19 " )

>

> She also noted that his heart beat comes through really strong

> through his chest and that we should follow up. We were going to

> anyway since I've always been suspicious that we've never had a

> cardiologist look/listen to his heart. The heart seems to be at the

> center of so many birth defects and he seems to have a number (blue

> sclera (sp?), high arched mouth, prominent eyes, low set-prominent

> ears, triangular face, sternum cavitatum). Anyway, I was reading a

> report from his hospital stay (ph probe and ng tube placement) and

> noticed a radiologist made a comment about a prominent cardiothymic

> shadow. So I wanted to follow up on that anyway.

>

>

> Anyway, enough blabbing.

>

> Cheers,

>

> Steve

>

>

>

>

[Guest guest]

Steve -

The call of " SGA " versus " RSS " is a difficult one, and truly so much

of it is experience - just seeing lots of lots of RSS and SGA kids.

I can't tell you how many teary-eyed parents have come out of Dr.

Harbison's visit, sure that their child had RSS and she has said no,

RSS (or in some cases, even felt strongly about a specific other

condition).

Her comments about the muscle probably has nothing to do with the RSS

diagnosis. Some RSS kids have muscle some don't - she told us it

probably has more to do with genetics than anything (why our daughter

has lots of muscle and her RSS friend Marissa has almost none - both

on GH).

Re the G-tube, I would go with Dr. Dumont's plan for now. Dr.

Harbison saw you for 30 minutes. Not a long time, and only a first

time. Dr. Dumont does talk with Dr. Harbison and does agree with

much of her plans (they are planning a conference call between

surgical teams so his team can learn about the new way her team is

doing these Nissans and pyloroplastys (did I spell that right?).

If Dr. Dumont feels that there is a need, he will do the G-tube. I

trust him, and you can see him regularly.

I would follow up on Dr. H's comment about the heartbeat, though. If

there is one thing about Dr. H that is very strange but so true - she

has this uncanny ability to pick out random rare medical issues in

kids that NO OTHER DOCTOR has ever found!!! SGA kids that come in

and she says " they have xyi rare genetic disorder " and lo and behold

I found out later, yes, they did have that. She discovered my

daughter doesn't have a ziphoid process (that thing in your chest

that when you do CPR you find that bone and press 2 fingers below

that?) - just a random thing and doesn't hurt not to have.

But of the zillions of doctors that have treated and x-rayed

her, etc., Dr. H is the one to find that.

Keep us posted!!! Tell Dr. Dumont that we loved his presentation.

> We were fortunate in that Dr. H. could squeeze us in Wednesday

night

> (the night before we flew away for 10 days).

>

> Dr. Harbison was convinced that does NOT have RSS. I asked

> if she knew what he had and she said SGA - no surprise there, just

> nothing more specific. It was kind of a whirlwind visit and we

were

> trying to remember afterwards what exactly she saw that convinced

> her and about all we can remember are two points:

>

> 1) he has decent muscle mass, just no fat (in particular she was

> excited by his " big " hamstrings). We're thinking that perhaps this

> was the main reason? I guess the RSS kids have no fat and little

> muscle mass.

>

> 2) his face doesn't fit her experience of RSS. Yes, he has the

> triangular face, but he has more of a wizened gnome look, not the

> more of a " sprite " look (pixie?). Again, were not sure if this was

> a major reason for " excluding " him from RSS.

>

> Anyway, we were wondering if Dr. Harbison writes any basic summary

> of the visits that we could obtain. We don't expect that she would

> be able to remember much about any baby in particular after going

> through her daunting marathon sessions unless it was written at the

> time.

>

> She also recommended we do an immediate g-tube with the Nissan

> fundoplication which our ped. endo. doctor (Dr.Dumont of Loyola

> Univ. Hosp - yes, he apparently spoke at Magic) here in Chicago

> apparently objects to (g-tube, not sure if he objects to the

fund.)

> But we only heard second hand from him through his nurse since we

> were playing phone tag from Virginia. He apparently wants to ng

him

> for another month and then try other strategies for weaning him off

> the ng tube (not sure what those are). I'll call on Monday and see

> what's going on there.

>

> My impression from reading this group is that people go to Dr.

> Harbison to get her opinion about g tubes since she doesn't rush

> babies into them unless they really need it. Of course, with two

> Magic associated doctors (Harbison and Dumont) giving opposing

> opinions, it's somewhat confusing. I'm guessing Dr. H's reason for

> saying an immediate g-tube is based on his weight/height ratio -

13

> lbs even and 26 1/4 " at 8.5 months (birth wt 5 lb 5 oz, 19 " )

>

> She also noted that his heart beat comes through really strong

> through his chest and that we should follow up. We were going to

> anyway since I've always been suspicious that we've never had a

> cardiologist look/listen to his heart. The heart seems to be at

the

> center of so many birth defects and he seems to have a number (blue

> sclera (sp?), high arched mouth, prominent eyes, low set-prominent

> ears, triangular face, sternum cavitatum). Anyway, I was reading a

> report from his hospital stay (ph probe and ng tube placement) and

> noticed a radiologist made a comment about a prominent cardiothymic

> shadow. So I wanted to follow up on that anyway.

>

>

> Anyway, enough blabbing.

>

> Cheers,

>

> Steve

[Guest guest]

Steve -

The call of " SGA " versus " RSS " is a difficult one, and truly so much

of it is experience - just seeing lots of lots of RSS and SGA kids.

I can't tell you how many teary-eyed parents have come out of Dr.

Harbison's visit, sure that their child had RSS and she has said no,

RSS (or in some cases, even felt strongly about a specific other

condition).

Her comments about the muscle probably has nothing to do with the RSS

diagnosis. Some RSS kids have muscle some don't - she told us it

probably has more to do with genetics than anything (why our daughter

has lots of muscle and her RSS friend Marissa has almost none - both

on GH).

Re the G-tube, I would go with Dr. Dumont's plan for now. Dr.

Harbison saw you for 30 minutes. Not a long time, and only a first

time. Dr. Dumont does talk with Dr. Harbison and does agree with

much of her plans (they are planning a conference call between

surgical teams so his team can learn about the new way her team is

doing these Nissans and pyloroplastys (did I spell that right?).

If Dr. Dumont feels that there is a need, he will do the G-tube. I

trust him, and you can see him regularly.

I would follow up on Dr. H's comment about the heartbeat, though. If

there is one thing about Dr. H that is very strange but so true - she

has this uncanny ability to pick out random rare medical issues in

kids that NO OTHER DOCTOR has ever found!!! SGA kids that come in

and she says " they have xyi rare genetic disorder " and lo and behold

I found out later, yes, they did have that. She discovered my

daughter doesn't have a ziphoid process (that thing in your chest

that when you do CPR you find that bone and press 2 fingers below

that?) - just a random thing and doesn't hurt not to have.

But of the zillions of doctors that have treated and x-rayed

her, etc., Dr. H is the one to find that.

Keep us posted!!! Tell Dr. Dumont that we loved his presentation.

> We were fortunate in that Dr. H. could squeeze us in Wednesday

night

> (the night before we flew away for 10 days).

>

> Dr. Harbison was convinced that does NOT have RSS. I asked

> if she knew what he had and she said SGA - no surprise there, just

> nothing more specific. It was kind of a whirlwind visit and we

were

> trying to remember afterwards what exactly she saw that convinced

> her and about all we can remember are two points:

>

> 1) he has decent muscle mass, just no fat (in particular she was

> excited by his " big " hamstrings). We're thinking that perhaps this

> was the main reason? I guess the RSS kids have no fat and little

> muscle mass.

>

> 2) his face doesn't fit her experience of RSS. Yes, he has the

> triangular face, but he has more of a wizened gnome look, not the

> more of a " sprite " look (pixie?). Again, were not sure if this was

> a major reason for " excluding " him from RSS.

>

> Anyway, we were wondering if Dr. Harbison writes any basic summary

> of the visits that we could obtain. We don't expect that she would

> be able to remember much about any baby in particular after going

> through her daunting marathon sessions unless it was written at the

> time.

>

> She also recommended we do an immediate g-tube with the Nissan

> fundoplication which our ped. endo. doctor (Dr.Dumont of Loyola

> Univ. Hosp - yes, he apparently spoke at Magic) here in Chicago

> apparently objects to (g-tube, not sure if he objects to the

fund.)

> But we only heard second hand from him through his nurse since we

> were playing phone tag from Virginia. He apparently wants to ng

him

> for another month and then try other strategies for weaning him off

> the ng tube (not sure what those are). I'll call on Monday and see

> what's going on there.

>

> My impression from reading this group is that people go to Dr.

> Harbison to get her opinion about g tubes since she doesn't rush

> babies into them unless they really need it. Of course, with two

> Magic associated doctors (Harbison and Dumont) giving opposing

> opinions, it's somewhat confusing. I'm guessing Dr. H's reason for

> saying an immediate g-tube is based on his weight/height ratio -

13

> lbs even and 26 1/4 " at 8.5 months (birth wt 5 lb 5 oz, 19 " )

>

> She also noted that his heart beat comes through really strong

> through his chest and that we should follow up. We were going to

> anyway since I've always been suspicious that we've never had a

> cardiologist look/listen to his heart. The heart seems to be at

the

> center of so many birth defects and he seems to have a number (blue

> sclera (sp?), high arched mouth, prominent eyes, low set-prominent

> ears, triangular face, sternum cavitatum). Anyway, I was reading a

> report from his hospital stay (ph probe and ng tube placement) and

> noticed a radiologist made a comment about a prominent cardiothymic

> shadow. So I wanted to follow up on that anyway.

>

>

> Anyway, enough blabbing.

>

> Cheers,

>

> Steve

[Guest guest]

Steve -

The call of " SGA " versus " RSS " is a difficult one, and truly so much

of it is experience - just seeing lots of lots of RSS and SGA kids.

I can't tell you how many teary-eyed parents have come out of Dr.

Harbison's visit, sure that their child had RSS and she has said no,

RSS (or in some cases, even felt strongly about a specific other

condition).

Her comments about the muscle probably has nothing to do with the RSS

diagnosis. Some RSS kids have muscle some don't - she told us it

probably has more to do with genetics than anything (why our daughter

has lots of muscle and her RSS friend Marissa has almost none - both

on GH).

Re the G-tube, I would go with Dr. Dumont's plan for now. Dr.

Harbison saw you for 30 minutes. Not a long time, and only a first

time. Dr. Dumont does talk with Dr. Harbison and does agree with

much of her plans (they are planning a conference call between

surgical teams so his team can learn about the new way her team is

doing these Nissans and pyloroplastys (did I spell that right?).

If Dr. Dumont feels that there is a need, he will do the G-tube. I

trust him, and you can see him regularly.

I would follow up on Dr. H's comment about the heartbeat, though. If

there is one thing about Dr. H that is very strange but so true - she

has this uncanny ability to pick out random rare medical issues in

kids that NO OTHER DOCTOR has ever found!!! SGA kids that come in

and she says " they have xyi rare genetic disorder " and lo and behold

I found out later, yes, they did have that. She discovered my

daughter doesn't have a ziphoid process (that thing in your chest

that when you do CPR you find that bone and press 2 fingers below

that?) - just a random thing and doesn't hurt not to have.

But of the zillions of doctors that have treated and x-rayed

her, etc., Dr. H is the one to find that.

Keep us posted!!! Tell Dr. Dumont that we loved his presentation.

> We were fortunate in that Dr. H. could squeeze us in Wednesday

night

> (the night before we flew away for 10 days).

>

> Dr. Harbison was convinced that does NOT have RSS. I asked

> if she knew what he had and she said SGA - no surprise there, just

> nothing more specific. It was kind of a whirlwind visit and we

were

> trying to remember afterwards what exactly she saw that convinced

> her and about all we can remember are two points:

>

> 1) he has decent muscle mass, just no fat (in particular she was

> excited by his " big " hamstrings). We're thinking that perhaps this

> was the main reason? I guess the RSS kids have no fat and little

> muscle mass.

>

> 2) his face doesn't fit her experience of RSS. Yes, he has the

> triangular face, but he has more of a wizened gnome look, not the

> more of a " sprite " look (pixie?). Again, were not sure if this was

> a major reason for " excluding " him from RSS.

>

> Anyway, we were wondering if Dr. Harbison writes any basic summary

> of the visits that we could obtain. We don't expect that she would

> be able to remember much about any baby in particular after going

> through her daunting marathon sessions unless it was written at the

> time.

>

> She also recommended we do an immediate g-tube with the Nissan

> fundoplication which our ped. endo. doctor (Dr.Dumont of Loyola

> Univ. Hosp - yes, he apparently spoke at Magic) here in Chicago

> apparently objects to (g-tube, not sure if he objects to the

fund.)

> But we only heard second hand from him through his nurse since we

> were playing phone tag from Virginia. He apparently wants to ng

him

> for another month and then try other strategies for weaning him off

> the ng tube (not sure what those are). I'll call on Monday and see

> what's going on there.

>

> My impression from reading this group is that people go to Dr.

> Harbison to get her opinion about g tubes since she doesn't rush

> babies into them unless they really need it. Of course, with two

> Magic associated doctors (Harbison and Dumont) giving opposing

> opinions, it's somewhat confusing. I'm guessing Dr. H's reason for

> saying an immediate g-tube is based on his weight/height ratio -

13

> lbs even and 26 1/4 " at 8.5 months (birth wt 5 lb 5 oz, 19 " )

>

> She also noted that his heart beat comes through really strong

> through his chest and that we should follow up. We were going to

> anyway since I've always been suspicious that we've never had a

> cardiologist look/listen to his heart. The heart seems to be at

the

> center of so many birth defects and he seems to have a number (blue

> sclera (sp?), high arched mouth, prominent eyes, low set-prominent

> ears, triangular face, sternum cavitatum). Anyway, I was reading a

> report from his hospital stay (ph probe and ng tube placement) and

> noticed a radiologist made a comment about a prominent cardiothymic

> shadow. So I wanted to follow up on that anyway.

>

>

> Anyway, enough blabbing.

>

> Cheers,

>

> Steve