update- kyla G.I. today

[Guest guest]

hi everyone, we went to see the G.I. today, we spent 6 hours there,

mainly because they overbooked (of course) but with a 4 year old and

a 19 month old, well, you know..it wasn't fun, very

stressful....okay, kyla is very backed up bowel wise so she is back

on moralax, she hasn't been on it for almost a year she has been

really good. she is on periactin which was the whole reason for

todays appointment, she needs it...she is on zyrtec for allergies

because lets face it its just that time of year...she is on prevacid

because of the acid in her urine,...she has one month (or until July

27th) to gain 10+pounds or else she will be put on a feeding

tube....so that means that is where we are headed because there is NO

way she will gain that much, not even with the pericatin, but believe

me i will try to make her eat because i don't want to do that to her,

she pulled teh biggest fit today when they took blood, they believe

she is also aneimic..does anyone here have that problem?i guess its

from the lack of nutrition from the lack of eating?? also, she has

something called cyclic vomiting syndrome since she has migraines and

throws up with them, so i guess thats something else to add to the

list, not exactly sure what all this consist of, i will do research

on it tomarrow, i am too tired tonight....any input will be

appreciated when it comes to the feeding tube, i know a lot of people

here deal with it, they wanted to do it on the 18th of july, but i

asked to put it off so that if she does get it we will be able to go

to chicago, i don't want to get it on the 18th and have complications

and not be able to go learn and meet all of you!!! besides whats a

week?? thanks for listning and any feedback!! stephanie kyla 4 RSS

[Guest guest]

Kyla,

We were happy to find a surgeon who did both a g-tube and fundo endoscopically

- he was Dr. Rothenberg in Denver. I just did a websearch and found he wrote

an article on it:

http://www.pediatricsurgeon.com/clinicians/rmps_lap_nissen.pdf

In the conclusions, he said: " Clinical results are comparable to the

traditional open fundoplacation but with a significant decrease in morbidity

and hospitalization. " Tim only had to have 4 quarter inch incisions, and

shortly after the first month's healing, he could both be fed large amounts by

g-tube and prevented from vomiting them up. And when he really had to vomit,

some could get through, although we like to open his port to decrease

pressure. Tim started his feeding tube and Gh at the same time, and his weight

doubled in a year and he grew a lot! He went from coming up to my groin to

almost my shoulders in 3 years... Also, we fed him plenty via medicine

dropper, but he would vomit it up with reflux, so the fundo really helped. We

waited until he was almost 7 years old and only weighed 20 pounds, so we

definitely exhausted our alternatives!

Dr. Rothenberg is pretty nice - you may want to give him a call and ask him if

he could give you referrals or suggestions if you can't go to him. His contact

info is at:

http://www.pediatricsurgeon.com/ContactUs.html

Also, does anyone know if Dr. H works with surgeons doing this procedure?

Inga

At 03:36 AM 6/16/2005 +0000, you wrote:

>

> hi everyone, we went to see the G.I. today, we spent 6 hours there,

> mainly because they overbooked (of course) but with a 4 year old and

> a 19 month old, well, you know..it wasn't fun, very

> stressful....okay, kyla is very backed up bowel wise so she is back

> on moralax, she hasn't been on it for almost a year she has been

> really good. she is on periactin which was the whole reason for

> todays appointment, she needs it...she is on zyrtec for allergies

> because lets face it its just that time of year...she is on prevacid

> because of the acid in her urine,...she has one month (or until July

> 27th) to gain 10+pounds or else she will be put on a feeding

> tube....so that means that is where we are headed because there is NO

> way she will gain that much, not even with the pericatin, but believe

> me i will try to make her eat because i don't want to do that to her,

> she pulled teh biggest fit today when they took blood, they believe

> she is also aneimic..does anyone here have that problem?i guess its

> from the lack of nutrition from the lack of eating?? also, she has

> something called cyclic vomiting syndrome since she has migraines and

> throws up with them, so i guess thats something else to add to the

> list, not exactly sure what all this consist of, i will do research

> on it tomarrow, i am too tired tonight....any input will be

> appreciated when it comes to the feeding tube, i know a lot of people

> here deal with it, they wanted to do it on the 18th of july, but i

> asked to put it off so that if she does get it we will be able to go

> to chicago, i don't want to get it on the 18th and have complications

> and not be able to go learn and meet all of you!!! besides whats a

> week?? thanks for listning and any feedback!! stephanie kyla 4 RSS

>

>

>

>

> ----------

>

[Guest guest]

,

I am sure you were about ready to pull your hair out after waiting 4hrs!! I

know I would have!! I know right now you are reeling from all the

information you received yesterday as well. I am so glad you will be able

to go to the convention prior to a g-tube placement. I think you will find

after the initial shock and fear, there is only relief after a tube is

placed. That is certainly how it was for us (and !) even though we

fought the tube long and hard, it was the BEST thing we could have done. IT

saves us hospital trips, blood sugar drops, and worry and frustration. Not

to mention time! I never realized how much our lives revolved around

feeding Alyssa until after her surgery!! I also never realized that my

seemingly bright, happy child was NOT getting enough to eat. Because she was

so tiny and doing so well (for her size according to reg. docs) we didn't

realize how little energy she must have had until after her surgery!!! She

was a new kid!!!!! She ran she played she talked non stop!!!!! We thought

she was energetic before but Lordy, how could we have known what we were

REALLY In store for!! She never stops now!! The point is, without adequate

food intake many things suffer. Nutrition, development, health are just the

beginning. I am confident that just like the rest of us, you will love her

tube if it becomes necessary. It's a little complicated at first, but

you'll be a pro in a week or so!! You have the added benefit of meeting

others in your shoes at the convention who can tell you what to expect!!

Everything will work out!!!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of blondesteph_00

Sent: Wednesday, June 15, 2005 10:36 PM

To: RSS-Support

Subject: update- kyla G.I. today

hi everyone, we went to see the G.I. today, we spent 6 hours there,

mainly because they overbooked (of course) but with a 4 year old and

a 19 month old, well, you know..it wasn't fun, very

stressful....okay, kyla is very backed up bowel wise so she is back

on moralax, she hasn't been on it for almost a year she has been

really good. she is on periactin which was the whole reason for

todays appointment, she needs it...she is on zyrtec for allergies

because lets face it its just that time of year...she is on prevacid

because of the acid in her urine,...she has one month (or until July

27th) to gain 10+pounds or else she will be put on a feeding

tube....so that means that is where we are headed because there is NO

way she will gain that much, not even with the pericatin, but believe

me i will try to make her eat because i don't want to do that to her,

she pulled teh biggest fit today when they took blood, they believe

she is also aneimic..does anyone here have that problem?i guess its

from the lack of nutrition from the lack of eating?? also, she has

something called cyclic vomiting syndrome since she has migraines and

throws up with them, so i guess thats something else to add to the

list, not exactly sure what all this consist of, i will do research

on it tomarrow, i am too tired tonight....any input will be

appreciated when it comes to the feeding tube, i know a lot of people

here deal with it, they wanted to do it on the 18th of july, but i

asked to put it off so that if she does get it we will be able to go

to chicago, i don't want to get it on the 18th and have complications

and not be able to go learn and meet all of you!!! besides whats a

week?? thanks for listning and any feedback!! stephanie kyla 4 RSS

_____