An old timer needs a shoulder!

[Guest guest]

Hi, all! For those that remember me.... " hello again " . For the many

of you that are new, I was the third person to join this listserve

waaay back when.

My son, , is now 8 yrs. old as of 12/7 and was first diagnosed at

birth. He has assemetry, former g-tuber, on GH and full of life!

Anyway, after coming off the g-tube in April of 2003 his weight gain

has gone downhill. We have tried feeding therapy, nutrionists appts.

and just plain old BEGGING and tricking him to eat more. Anyway, he

has not gained weight since last May and at 34 lbs. and 43 inches

tall, the doctors are now concerned. My fear is having to go back to

the g-tube. Not because I hated the g-tube or that it was a bother,

but just for the simple fact of having his little tummy go through

another surgery.

He will have a gut-dismotility test done very soon to see if

something is going on there.

Anyway, I thought we were past the difficult part of RSS and felt

pretty educated on the subject, but find myself falling back to

stress, sadness, frustration, and terribly worried!!!!!!!!!!!!!! I

look at my little guy and just want to cry out of pure mental

exhaustion.

For those of you that are pray-ers or go to Church, could sure

use your prayers. I appreciate this very much.

I hope that your RSS situations are going well and pray for these

little ones all the time!

Stacie

Mom to daughter, (non-RSS) and son, (RSS).

[Guest guest]

Hi Stacie,

I am very glad to hear from you again. It has been a long time.

I was looking through some old files and I came across some old e-

mails from around the time I was in San and got the chance to

come and visit you, Tim, and .

Sorry to hear that has not gained weight. Is he on growth

hormone? is and that seems to help his appetite. Also, is

on Periactin? Again is and that helps some also. However, the

combination of the 2 seem to create some sort of synergistic affect.

Combined they have really helped his appetite. Of course he was

getting a pretty large dose of periactin and a moderate dose of

growth hormone. We have since cut back on the periactin but not the

growth hormone. His appetite has remained the same.

How have you been? How is Tim and ? I hope all is well

otherwise.

I hope this helps.

Ken M

getting

>

>

>

> Hi, all! For those that remember me.... " hello again " . For the

many

> of you that are new, I was the third person to join this listserve

> waaay back when.

>

> My son, , is now 8 yrs. old as of 12/7 and was first diagnosed

at

> birth. He has assemetry, former g-tuber, on GH and full of life!

>

> Anyway, after coming off the g-tube in April of 2003 his weight

gain

> has gone downhill. We have tried feeding therapy, nutrionists

appts.

> and just plain old BEGGING and tricking him to eat more. Anyway,

he

> has not gained weight since last May and at 34 lbs. and 43 inches

> tall, the doctors are now concerned. My fear is having to go back

to

> the g-tube. Not because I hated the g-tube or that it was a

bother,

> but just for the simple fact of having his little tummy go through

> another surgery.

>

> He will have a gut-dismotility test done very soon to see if

> something is going on there.

>

> Anyway, I thought we were past the difficult part of RSS and felt

> pretty educated on the subject, but find myself falling back to

> stress, sadness, frustration, and terribly worried!!!!!!!!!!!!!! I

> look at my little guy and just want to cry out of pure mental

> exhaustion.

>

> For those of you that are pray-ers or go to Church, could sure

> use your prayers. I appreciate this very much.

>

> I hope that your RSS situations are going well and pray for these

> little ones all the time!

>

> Stacie

> Mom to daughter, (non-RSS) and son, (RSS).

[Guest guest]

Please know that I am thinking of you and . That is what I

dislike about RSS the most - I feel like the g-tube tricks you by

making you see that your child can gain weight and then you try to

miantain it and then they lose and your back at square 1. My son

Colin- 4 is now complaining it hurts him. We have an appointment

with the surgeon Feb2 at Columbia Presbyterian in NYC to see what is

going on. I will keep you in my thoughts.

M.

Mom to Colin- 4 (RSS) and Gillian 6 months (noon-RSS)

>

>

>

> Hi, all! For those that remember me.... " hello again " . For the

many

> of you that are new, I was the third person to join this listserve

> waaay back when.

>

> My son, , is now 8 yrs. old as of 12/7 and was first diagnosed

at

> birth. He has assemetry, former g-tuber, on GH and full of life!

>

> Anyway, after coming off the g-tube in April of 2003 his weight

gain

> has gone downhill. We have tried feeding therapy, nutrionists

appts.

> and just plain old BEGGING and tricking him to eat more. Anyway,

he

> has not gained weight since last May and at 34 lbs. and 43 inches

> tall, the doctors are now concerned. My fear is having to go back

to

> the g-tube. Not because I hated the g-tube or that it was a

bother,

> but just for the simple fact of having his little tummy go through

> another surgery.

>

> He will have a gut-dismotility test done very soon to see if

> something is going on there.

>

> Anyway, I thought we were past the difficult part of RSS and felt

> pretty educated on the subject, but find myself falling back to

> stress, sadness, frustration, and terribly worried!!!!!!!!!!!!!!

I

> look at my little guy and just want to cry out of pure mental

> exhaustion.

>

> For those of you that are pray-ers or go to Church, could

sure

> use your prayers. I appreciate this very much.

>

> I hope that your RSS situations are going well and pray for these

> little ones all the time!

>

> Stacie

> Mom to daughter, (non-RSS) and son, (RSS).