Re: New RSS mom ng tube ???

[Guest guest]

Hi, Ruth Ann. I'm Jodi Z, one of several Jodi's on this listserve.

I have a 17.5 year old son named Max who has RSS. (I also have a 20

year old daughter without RSS, but who gives us her share of

problems, too! Behavioral, rebellious, you name it!) I'm also a

special ed teacher and very active in this group. I hate to say it,

but I'm one of the oldest. Yikes!

Max was ng tube fed from 2.5 months until he was 4 years old. G-

tubes were not common back then, reserved mainly for severely

involved kids who did not ever stand a chance of eating. We did not

know any better, Max was happy with his " Dube " as he called it, and

it was just part of him. He had severe hypoglycemia, so taking him

off his pump feedings for even a few hours put him at risk for low

blood sugar. It was a nightmare. I knew of no one else in our

position, no doctors could tell us what was wrong and we felt so

alone.

At 8 months, Max was diagnosed with RSS. This was confirmed by many

doctors we had met along the way. We had a wonderful GI doctor in

New York and he supported us through the tube feedings and formulas

and helped Max to begin to gain weight and to control his severe

reflux that we did not know he had. Then at 14 months we found Dr.

Harbison, also in NYC. Max was her third RSS patient. Now she has

over 200, closer to 300.

Until two years ago, Max was tube fed in one form or another. With

intense speech therapy and control of his reflux, he was able to

begin to eat some foods, but not enough to sustain him. Gradually,

by the time he started kindergarten, he was eating enough during the

day, but needed the pump feeds at night. As time went on, he ate

more and more and only needed the pump for sick times, when his

eating was not good. He had to go for a year without needing the

pump and that was achieved last spring. YIPPEE!!!! He and we were

so happy. (Oh - he was converted to a g-tube at 4 years old. Now

it is done much sooner as they are more common.)

Would you believe that Max is now a bit over 5'5 " and 121 pounds?

We find it to be a true miracle. If you only knew what we have been

through with this guy. It's been a road filled with many

complications, but he is doing quite well.

As for Sydney, I would imagine that if she is not eating on her own,

cannot go for long periods without food, then she should have a g-

tube placed. It's not a great feeling to know that a doctor/surgeon

will be marking up that sweet, adorable little tummy, but the

benefits and relief are just so wonderful. You are already halfway

there with the ng. Everyone who has " made the leap " has been very

satisfied and relieved.

I'm so glad that you have found us. You are going to make some of

the best friends in your life right here. I know I have. We are a

large family and we support each other through all sorts of things,

not even RSS-related at times. (Like poor Ken and Amy whose

football teams lost.....)

I'm sure at some point you will get a post from Sheldon. He is our

official welcoming party. He's grandpa to Laikyn. (But I'm older!

49 and holding.)

Lots of love,

Jodi Z

[Guest guest]

Ruth Ann,

Hello. I am another Jodi! You'll be so confused for a while trying

to keep us straight! ;o) But, I am Jodi R., 's mommy.

is 3 years and almost 8 months old. He wasn't diagnosed with RSS

until he was 17 months old and very malnourished despite a feeding

tube! And, we had to go all the way to New York City from Ohio to

see Dr. Harbison. Jodi Z. briefly talked about her. Just so you

know, she is an expert in RSS and based in New York City. Many of us

make the trip to see her. I believe she saved 's life at that

point. He was 17 months old exactly and weighed a mere 10 lbs. 10

oz. His life was just going right by him as he was not able to do

anything he was so little. He had no strength and no one could tell

us what was wrong with him. I even had to go to Cleveland Clinic in

order for a doctor to be almost sure he had RSS. All local doctors

weren't pursuing it. So, that is how I found out about Dr. Harbison

as the doctor in Cleveland had seen another RSS patient that went to

Dr. Harbison. is the little boy and you will probably hear

from Pat, his grandma! ;o)

Anyway. Sorry to ramble. I just wanted to tell you that was

NG fed from the beginning as he could not suck on a bottle and if he

did actually suck, he would gag and choke. He had this for the first

6 months of his life. He then received a G tube since he was

obviously not willing to eat on his own. Your question about the

solids varies greatly....even with non RSS kids, but even more so

with RSS kids. Some of the RSS kids are " eaters " and some aren't.

Others may be able to help you more with this, as isn't an

eater, even now. He tries and we have been able to reduce his tube

feedings to only mainly nighttime, but it is still a huge challenge

to get him to eat. He is always saying that he isn't hungry and even

the thought of food at times makes him gag.

I wanted to welcome you to this group. You will learn so much from

the wonderful people on here. I hope to see you on here a lot more

now! Did I see you are in Ohio? We are about 45 minutes northeast

of Columbus. There is another RSS family that is also near

Columbus. Hope to talk to you soon and welcome to the group, Ruth

Ann!!

Jodi R.

's mommy

>

> Hello everyone. I have a 5 month old little girl named Sydney.

She

> was diagnosed RSS almost right at birth. We have been thru genetic

> testing and some GI work. She has been on a NG tube since she was

3mo

> old. She was taking some bottle feedings during the day until she

got

> sick. She is now feeling better but is not interested in sucking

very

> much. I am going to ask her speech therapist Tues if she has any

> ideas. I am curious if and when your children went from ng tube to

g

> tube. My GI doc is not really talking much about G tube, but

> everything I have read from magic points that way. Could anyone

give

> me some insight. I also am curious anout solids when do these kids

> even start with that?????Ruth Ann Dowler Convoy, oh

>

[Guest guest]

Hi Ruth Ann,

Welcome to the group! I'm not sure about when to go to g-tube, my

daughter needed one later on, and it was pretty much an emergency situation. I

would say if you feel she hasn't shown much interest in eating before the ng, or

didn't have much of an appetite, the problem will most likely continue, and a

g-tube would be easier over a long period of time. As you have read through

Magic, this is very common. Even kids who once had an appetite and did okay

gaining weight little by little, come to a crossroads and act like they've never

liked food! As is with my daughter Dasia, she is 23 months, and needed an ng

tube after gradually quitting eating, then even stopped drinking. So she has

surgery scheduled. Before the turnaround, I feel she had been getting enough to

get by, but with their need for extra calories to gain weight and grow, that

wasn't good enough, I want her to have everything her body needs. As for

starting solids I would definitely start some sort of food play to

make it a pleasant experience, dip her fingers in some fruit, encourage her to

lick it off. Anything you can think of to get her interested in eating. You have

an advantage having an early diagnosis, Dasia wasn't diagnosed until 18mo and I

didn't know about the early intervention programs until she was 15mo. Good Luck!

Tell us more about your precious Sydney! We love to hear about other RSS

families!

Mom to Dasia

23mo 17lbs 30 1/4in

Avery 6, Jaden 3

bdowler_72 wrote:

Hello everyone. I have a 5 month old little girl named Sydney. She

was diagnosed RSS almost right at birth. We have been thru genetic

testing and some GI work. She has been on a NG tube since she was 3mo

old. She was taking some bottle feedings during the day until she got

sick. She is now feeling better but is not interested in sucking very

much. I am going to ask her speech therapist Tues if she has any

ideas. I am curious if and when your children went from ng tube to g

tube. My GI doc is not really talking much about G tube, but

everything I have read from magic points that way. Could anyone give

me some insight. I also am curious anout solids when do these kids

even start with that?????Ruth Ann Dowler Convoy, oh