Re: To G-tube or not to G-tube...that is the question.

[Guest guest]

Hi ,

Thanks to some inspiration from you our fundraisers are doing

great and we're able to attend the convention this summer.

I can feel your frustration over Conners weight issues as we are

in the middle of it right now as well, we just got back from the GI

about an hour ago (update to come in my next post). And my main

concern was her weight gain or lack there of. At 4.5 yrs Olivia has

been stuck at 18lbs for 1.5 yrs. In 3 yrs (ages 1.5-4.5) she's

grown about 6 inches (yay) but only gained 4lbs, again, non of that

gained in the last year and a half. We were just prescribed

periactin today for the first time and he said if that doesn't work

that we'll go to something stronger or else a g-tube which he's not

keen on for a 4 yr old " eater " . I just want calories in her and

enough extra weight that she can stop spilling ketones every

morning!

I will keep you all in my thoughts and hope that you can come to

the best conclusion for Conner no matter what you have to do for

him.

Leah, Mom to 9yrs and Olivia 4.5 yrs

> Howdy Folks,

>

> I can't remember the last time I posted. Suffice it to say life

has

> been hell since the end of our fund raiser. All the kids have

been

> sick and my husband who is Bi-polar was not managed very well by

his

> doc cuz he took him off the mood stabilizers three months ago. I

> can honestly say I came within a 1/4 inch of committing him to the

> psyche ward on several occassions. The good news is that we have

a

> new psyche doc who noticed the drug imbalance gave him a month's

> supply in the office and I have my husband back after only two

days

> on the new meds.

>

> Whew!

>

> Well, here's the scoop on Connor. He ain't gaining weight and I

> find myself really looking hard now at the G-tube option.

>

> As far as RSS kids go, Connor would have been labled an " eater. "

He

> could consume 2-4 oz of liquid or food on his own. When on the

> appetite stimulant, this improved to 6-8 oz of food at a time.

Not

> great by " normal " standards, but adequate for growth and weight

> gain. This has come to a screeching halt.

>

> Over the last two months, Connor has had two head colds, cut three

> teeth and had an intestinal virus. All of these things

contributed

> to poor appetite. He often threw up whatever medicine I tried to

> put in him so I took him off the Zantac and Periactin. He threw

> ketones but never got severely hypoglycemic. At the last

Pediatric

> G. I. visit, Connor's weight was 15 lbs 7 oz. Three months

earlier

> he was at 15 11. His head has grown and he's gotten some length

27

> 3/4 inches, but no weight.

>

> As is the norm with RSS kids, you get them to eat something really

> good and full of calories, and then they stop eating it. We had a

> swallowing study done and to this day, Connor will not eat Peanutt

> Butter on bread anymore. His dyspahgia is still there and he

seems

> almost to be regressing in chewing capabilities. Something we had

> overcome was negative eating expereinces (choking and gagging)

> causing a food strike. These have come back. Connor will chew

> something, try to swallow, gag it back up and then quit eating.

He

> also wants to come into my arms and be comforted. Connor can

drink

> from a straw but only wants a bottle. As this is the primary

means

> of getting nutrition into him I don't quibble with all the " bottle

> etiquette " I hear from others. I give Connor a bottle at bedtime

> and he sleeps with it, sucking on it periodically throughout the

> night. These precious calories at night have kept him from losing

> even more weight. I realize I'm jepordizing his baby teeth but

> since he's going to lose them anyway I feel that it's moot point.

>

> Having acheived a modicum of health, I put Connor back on the

> Periactin and Zantac. Results: three cans of pediasure in a 24

> hour period and about 1/2 cup of food (cheerios, cheese crackers,

> pudding, hot dog meat or deli turkey meat). He had some chinese

> food chicken tonight but only after chewing them, spitting them

back

> out and then a few minutes later trying again. Our nutritionist

> sent us some Duocal to start adding to his wet foods. She's

looking

> into some other supplements for him.

>

> What is the criteria for a g-tube? How low does the BMI have to

go

> before this type of intervention is done? My GI doc said give him

a

> chance orally since it's Spring time and the flu season is over.

I

> am fortunate that he is in contact with Dr. H. and also treats

> another RSS child in central VA who did need a g-tube. I know

that

> my speech therapist is totally against a g-tube based on the

> complications that come along with them. Honestly, I don't know

> which way to turn save for the fact that I want what is best for

> Connor. Hopefully in October we will be starting GHT. I just

hope

> that we've acheived enough body mass in order to start that

> treatment.

>

> To summarize: Connor is 18 months old. Weight: 15 lbs 7 oz.

Length

> 27 3/4 in. Head circumfrence 40%. He can eat, but is the typical

> RSS child in that it is not regular and can be thwarted by

anything!

> The older he gets, the harder it gets to provide him with food

that

> he can consume willingly.

>

> His total calorie intake for a day is anywhere from 850-1000.

Most

> of this is acheived by three bottles of Pediasure. When he's sick,

> this drops down to two bottles.

>

> Developmentally: Right on target. Walking, talking, sleeping,

> playing.

>

> RSS phenotype: Slight assymetry in left leg - one lift in the left

> shoe and two arch supports for flat feet. Dysmorphic features.

> Small mouth. Ciphosis of the upper spine. Dysphagia. Connor is

on

> Pediasure, Periactin, Zantac, and Duocal.

>

> Any wisdom sent our way would be deeply appreciated.

>

> Fondly,

>

> Kearns

> Graham 7 ADD; Cameron 4; Connor 18 months SGA/RSS IUGR.

[Guest guest]

,

Sorry things have been tough lately. I read your email and I know

this is a tough decision. All I can do is comment based on our

experience. My son Jake, had a tube placed when he was Connor's

age. He weighed about 15 pounds and hadn't gained in several

months. We were also battling hypoglycmeia to some extent and his

ability to eat wasn't great.

We placed the tube based on Dr. H's recommendation and I am glad we

did it. We were lucky! He hasn't had bad complications, his

appetite actually got better and he only uses the tube at night for

his hypoglycemia and if he is sick. No more worries when he is

ill. (Actually just diagnosed with bronchitis and an ear infection

today and we have been using the tube basically all week....without

it he would have been hospitalized).

I'm not sure of the complications your speech therapist is worried

about (probably eating issues, speech issues?)....but I can say we

never had problems with this due to the tube. In fact Jake got

better after the tube.

I am a fan of g-tubes, but others are not. We have had big success

and it is conforting to us when Jake is sick. It is a big decision,

just wanted you to know it can be very positive and helpful. It has

also taken a huge amount of stress out of our family life. Good

luck in your decision,

Alison

> Howdy Folks,

>

> I can't remember the last time I posted. Suffice it to say life

has

> been hell since the end of our fund raiser. All the kids have

been

> sick and my husband who is Bi-polar was not managed very well by

his

> doc cuz he took him off the mood stabilizers three months ago. I

> can honestly say I came within a 1/4 inch of committing him to the

> psyche ward on several occassions. The good news is that we have

a

> new psyche doc who noticed the drug imbalance gave him a month's

> supply in the office and I have my husband back after only two

days

> on the new meds.

>

> Whew!

>

> Well, here's the scoop on Connor. He ain't gaining weight and I

> find myself really looking hard now at the G-tube option.

>

> As far as RSS kids go, Connor would have been labled an " eater. "

He

> could consume 2-4 oz of liquid or food on his own. When on the

> appetite stimulant, this improved to 6-8 oz of food at a time.

Not

> great by " normal " standards, but adequate for growth and weight

> gain. This has come to a screeching halt.

>

> Over the last two months, Connor has had two head colds, cut three

> teeth and had an intestinal virus. All of these things

contributed

> to poor appetite. He often threw up whatever medicine I tried to

> put in him so I took him off the Zantac and Periactin. He threw

> ketones but never got severely hypoglycemic. At the last

Pediatric

> G. I. visit, Connor's weight was 15 lbs 7 oz. Three months

earlier

> he was at 15 11. His head has grown and he's gotten some length

27

> 3/4 inches, but no weight.

>

> As is the norm with RSS kids, you get them to eat something really

> good and full of calories, and then they stop eating it. We had a

> swallowing study done and to this day, Connor will not eat Peanutt

> Butter on bread anymore. His dyspahgia is still there and he

seems

> almost to be regressing in chewing capabilities. Something we had

> overcome was negative eating expereinces (choking and gagging)

> causing a food strike. These have come back. Connor will chew

> something, try to swallow, gag it back up and then quit eating.

He

> also wants to come into my arms and be comforted. Connor can

drink

> from a straw but only wants a bottle. As this is the primary

means

> of getting nutrition into him I don't quibble with all the " bottle

> etiquette " I hear from others. I give Connor a bottle at bedtime

> and he sleeps with it, sucking on it periodically throughout the

> night. These precious calories at night have kept him from losing

> even more weight. I realize I'm jepordizing his baby teeth but

> since he's going to lose them anyway I feel that it's moot point.

>

> Having acheived a modicum of health, I put Connor back on the

> Periactin and Zantac. Results: three cans of pediasure in a 24

> hour period and about 1/2 cup of food (cheerios, cheese crackers,

> pudding, hot dog meat or deli turkey meat). He had some chinese

> food chicken tonight but only after chewing them, spitting them

back

> out and then a few minutes later trying again. Our nutritionist

> sent us some Duocal to start adding to his wet foods. She's

looking

> into some other supplements for him.

>

> What is the criteria for a g-tube? How low does the BMI have to

go

> before this type of intervention is done? My GI doc said give him

a

> chance orally since it's Spring time and the flu season is over.

I

> am fortunate that he is in contact with Dr. H. and also treats

> another RSS child in central VA who did need a g-tube. I know

that

> my speech therapist is totally against a g-tube based on the

> complications that come along with them. Honestly, I don't know

> which way to turn save for the fact that I want what is best for

> Connor. Hopefully in October we will be starting GHT. I just

hope

> that we've acheived enough body mass in order to start that

> treatment.

>

> To summarize: Connor is 18 months old. Weight: 15 lbs 7 oz.

Length

> 27 3/4 in. Head circumfrence 40%. He can eat, but is the typical

> RSS child in that it is not regular and can be thwarted by

anything!

> The older he gets, the harder it gets to provide him with food

that

> he can consume willingly.

>

> His total calorie intake for a day is anywhere from 850-1000.

Most

> of this is acheived by three bottles of Pediasure. When he's sick,

> this drops down to two bottles.

>

> Developmentally: Right on target. Walking, talking, sleeping,

> playing.

>

> RSS phenotype: Slight assymetry in left leg - one lift in the left

> shoe and two arch supports for flat feet. Dysmorphic features.

> Small mouth. Ciphosis of the upper spine. Dysphagia. Connor is

on

> Pediasure, Periactin, Zantac, and Duocal.

>

> Any wisdom sent our way would be deeply appreciated.

>

> Fondly,

>

> Kearns

> Graham 7 ADD; Cameron 4; Connor 18 months SGA/RSS IUGR.

[Guest guest]

With the recent talk about Gtube placement possiblilities I thought I would

share our experience. Alyssa was 23 months and 17lbs when her tube was placed

last Oct. She simply did not have anything to fight back with when she got sick

and does get hypo after 6hrs without food. THis was a problem at night. It was

not OK with me for her to ever spill ketones. It meant her body was burning

what little fat she had instead of fuel, and when it runs out of fat(how long is

that? a minute!) it burns muscle and other important cells beginning with the

brain. This was enough for us. My biggest fears were complications from the

surgery, reflux post surgery when there hadn't been any pre surgery, and losing

the precious progress we had made with her eating. As it turns out, her surgery

went off without a hitch and none of my fears came true. She came home on 18hrs

of feeds per day allowing 2 hrs for each meal to encourage eating. This has

been very important and her eating has o

nly progressed (as it should), If I had the choice I would do it again every

time. She is healthier, has MUCH more energy (didn't think that was possible),

is stronger, and catching up with her peers.

She has an AMT mini button which is great. I hated the foley tube she had post

surgery and was thankful for button placement 3 months later. We had a battle

with granulation tissue but WON!! Overall, it was the best decision for us and

although I did EVERYTHING possilbe to avoid a tube, it was simply necessary. I

never realized, how frail she really was, or how dull her hair was, or how

bright her eyes could be, how much she was missing out on because she literally

did not have the energy. She seemed happy and healthy. Now I know what healthy

really is!

Good luck with your decisions, every child and family is different and everyone

must make the right choice for their family. This was simply our experience.

GOOD LUCK!

Dayna, Mom to Alyssa 2 1/2, 23lbs 32.5inc.