Re: Ian's GI issues continued - contemplating more tests

[Guest guest]

,

I'd wait until you see Dr. H. Is there a way you can get the test

results to take with you? She would be interested in seeing them and

interpreting them herself.

Jodi Z

[Guest guest]

Your appt is only a month away. If if were me I would consider

making the appts with your dr at home for after you see dr. H. Then

you can cancel them or, if she says go ahead, you already have them

lined up.

I do swear though, one of us needs to invent some sort of calendar

where you can see the entire year at once with all drs appts. I am

booking Emerence out into next September already! I was finally

able to double up 2 drs. appts for Emerence with Drs. from

Children's on Dec 22 (yay me!). What a way to spend my birthday!

> Well, as I suspected would happen - Ian's GI doctor phoned last

> night and said that Ian's Ultra Sound went well and there were no

> issues with his liver and could not find anything that may be

> pushing on his intestines.

>

> The frustrating part though is that the GI is still concerned

about

> the narrowing of the Deodenum and wants to either do an Endoscopy

or

> a Cat Scan. I'm not so sure I want to go through with either of

> these. Here's my reason: The GI doc basically thinks the

narrowing

> may somehow be causing Ian's belly aches, but more importantly his

> lack of being able to get his weight up. What concerns me is the

> latter. What I failed to tell him and what I know the GI doc

fails

> to understand is that the reason Ian is unable to keep his weight

up

> is not because of anything but being an RSS child. Also, the

> narrowing is not causing any blockages. The GI doc thinks it may

be

> slowing down the food intake - but, Ian does not seem to exhibit

> slow emptying. As a matter of fact, I monitor this alot (based on

> what I feed him - I can see " what " comes out - such as

blueberries,

> peas, etc.) and he usually rids of these items the same day! Ian

is

> not typical in that he actually will tell me he's hungry and Ian

> eats! My dh and I think that sometimes we think his belly hurts

> because he's hungry!

>

> I plan on telling my GI doc that unless it's of dire emergency - I

> would like to wait until we review the information with Dr. H -

that

> she may have some insight. At our " meeting " with Dr. H at the

> convention - she said he looked " great " and didn't need a G-tube.

>

> Our RSS kids are just skinny and I think my GI doc needs to have a

> conversation with Dr. H - but, that can't happen until after our

> apptmt with Dr. H October 21.

>

> My husband absolutely agrees with my decision - he doesn't want to

> put him through any unnecessary tests.

>

> Any other thoughts greatly appreciated.

>

> - H

[Guest guest]

Jodi - thanks. Yes, I'm planning on asking for a CD of both the x-ray

and u/s - planned on calling today actually. I'm glad you agree with

me - makes me feel I'm on the right track.

- H

> ,

>

> I'd wait until you see Dr. H. Is there a way you can get the test

> results to take with you? She would be interested in seeing them

and

> interpreting them herself.

>

> Jodi Z

[Guest guest]

- great idea. Thanks. I haven't heard back from the GI doc

and he had mentioned he was going to talk to another Radiologist -

maybe they are qeustioning the plan....very interesting to say the

least. Anyway, I think I will do just that.

Next September for an appointment? Yikes! That is a long way

away! Hey, I'm always up for being an entrepreneur of somekind -

why not calendars?

- H

> > Well, as I suspected would happen - Ian's GI doctor phoned last

> > night and said that Ian's Ultra Sound went well and there were

no

> > issues with his liver and could not find anything that may be

> > pushing on his intestines.

> >

> > The frustrating part though is that the GI is still concerned

> about

> > the narrowing of the Deodenum and wants to either do an

Endoscopy

> or

> > a Cat Scan. I'm not so sure I want to go through with either of

> > these. Here's my reason: The GI doc basically thinks the

> narrowing

> > may somehow be causing Ian's belly aches, but more importantly

his

> > lack of being able to get his weight up. What concerns me is

the

> > latter. What I failed to tell him and what I know the GI doc

> fails

> > to understand is that the reason Ian is unable to keep his

weight

> up

> > is not because of anything but being an RSS child. Also, the

> > narrowing is not causing any blockages. The GI doc thinks it

may

> be

> > slowing down the food intake - but, Ian does not seem to exhibit

> > slow emptying. As a matter of fact, I monitor this alot (based

on

> > what I feed him - I can see " what " comes out - such as

> blueberries,

> > peas, etc.) and he usually rids of these items the same day!

Ian

> is

> > not typical in that he actually will tell me he's hungry and Ian

> > eats! My dh and I think that sometimes we think his belly hurts

> > because he's hungry!

> >

> > I plan on telling my GI doc that unless it's of dire emergency -

I

> > would like to wait until we review the information with Dr. H -

> that

> > she may have some insight. At our " meeting " with Dr. H at the

> > convention - she said he looked " great " and didn't need a G-

tube.

> >

> > Our RSS kids are just skinny and I think my GI doc needs to have

a

> > conversation with Dr. H - but, that can't happen until after our

> > apptmt with Dr. H October 21.

> >

> > My husband absolutely agrees with my decision - he doesn't want

to

> > put him through any unnecessary tests.

> >

> > Any other thoughts greatly appreciated.

> >

> > - H

[Guest guest]

Most of Emerence's doctor's from Children's Hospital Boston book out

a year - If I wait too long I am in trouble for getting a good time

for the appt....

> > > Well, as I suspected would happen - Ian's GI doctor phoned last

> > > night and said that Ian's Ultra Sound went well and there were

> no

> > > issues with his liver and could not find anything that may be

> > > pushing on his intestines.

> > >

> > > The frustrating part though is that the GI is still concerned

> > about

> > > the narrowing of the Deodenum and wants to either do an

> Endoscopy

> > or

> > > a Cat Scan. I'm not so sure I want to go through with either

of

> > > these. Here's my reason: The GI doc basically thinks the

> > narrowing

> > > may somehow be causing Ian's belly aches, but more importantly

> his

> > > lack of being able to get his weight up. What concerns me is

> the

> > > latter. What I failed to tell him and what I know the GI doc

> > fails

> > > to understand is that the reason Ian is unable to keep his

> weight

> > up

> > > is not because of anything but being an RSS child. Also, the

> > > narrowing is not causing any blockages. The GI doc thinks it

> may

> > be

> > > slowing down the food intake - but, Ian does not seem to

exhibit

> > > slow emptying. As a matter of fact, I monitor this alot (based

> on

> > > what I feed him - I can see " what " comes out - such as

> > blueberries,

> > > peas, etc.) and he usually rids of these items the same day!

> Ian

> > is

> > > not typical in that he actually will tell me he's hungry and

Ian

> > > eats! My dh and I think that sometimes we think his belly

hurts

> > > because he's hungry!

> > >

> > > I plan on telling my GI doc that unless it's of dire emergency -

> I

> > > would like to wait until we review the information with Dr. H -

> > that

> > > she may have some insight. At our " meeting " with Dr. H at the

> > > convention - she said he looked " great " and didn't need a G-

> tube.

> > >

> > > Our RSS kids are just skinny and I think my GI doc needs to

have

> a

> > > conversation with Dr. H - but, that can't happen until after

our

> > > apptmt with Dr. H October 21.

> > >

> > > My husband absolutely agrees with my decision - he doesn't want

> to

> > > put him through any unnecessary tests.

> > >

> > > Any other thoughts greatly appreciated.

> > >

> > > - H