Re: RE:Laikyn's not gaining any weight

[Guest guest]

Sheldon, unfortunately most parents on this list are away at the

convention this weekend. I have no expierence with g-tubes, so I

can't help you there. Someome will be able to answer your question

when they get back so just hang on for a few days for a reply.

ne

> Hello everyone this is sheldon, laikyn's grandfather from Mandan

> N.D.MY daughter is very concerned about Laikyn's lack of weight

> gain.She was gaining about 5ozs a week and now the last 2 weeks she

> has gained only 3ozs.She was 3month's on the 10th of July and she

> weighes 5lbs8ozs and is 173/4 " long.She has a g-tube in her.Now the

> Dr. is talking about some type of a machine she will have to have

so

> she can be continually fed all night.Does anybody know anything

> about those or have any suggestion's on what else we can do.We were

> told the other day by the Dr. that Laikyn has one of the worst

> case's of RSS he has ever seen.What kind of hard road do we have

> ahead of us.I am writing this because my Daughter is busy working

> and trying to take care of her Daughter.So i try to find as much

> info and help i can get.I would appreciate any help at all. Please

>

> Thank you very much

> Sheldon

[Guest guest]

Sheldon, unfortunately most parents on this list are away at the

convention this weekend. I have no expierence with g-tubes, so I

can't help you there. Someome will be able to answer your question

when they get back so just hang on for a few days for a reply.

ne

> Hello everyone this is sheldon, laikyn's grandfather from Mandan

> N.D.MY daughter is very concerned about Laikyn's lack of weight

> gain.She was gaining about 5ozs a week and now the last 2 weeks she

> has gained only 3ozs.She was 3month's on the 10th of July and she

> weighes 5lbs8ozs and is 173/4 " long.She has a g-tube in her.Now the

> Dr. is talking about some type of a machine she will have to have

so

> she can be continually fed all night.Does anybody know anything

> about those or have any suggestion's on what else we can do.We were

> told the other day by the Dr. that Laikyn has one of the worst

> case's of RSS he has ever seen.What kind of hard road do we have

> ahead of us.I am writing this because my Daughter is busy working

> and trying to take care of her Daughter.So i try to find as much

> info and help i can get.I would appreciate any help at all. Please

>

> Thank you very much

> Sheldon

[Guest guest]

Sheldon, unfortunately most parents on this list are away at the

convention this weekend. I have no expierence with g-tubes, so I

can't help you there. Someome will be able to answer your question

when they get back so just hang on for a few days for a reply.

ne

> Hello everyone this is sheldon, laikyn's grandfather from Mandan

> N.D.MY daughter is very concerned about Laikyn's lack of weight

> gain.She was gaining about 5ozs a week and now the last 2 weeks she

> has gained only 3ozs.She was 3month's on the 10th of July and she

> weighes 5lbs8ozs and is 173/4 " long.She has a g-tube in her.Now the

> Dr. is talking about some type of a machine she will have to have

so

> she can be continually fed all night.Does anybody know anything

> about those or have any suggestion's on what else we can do.We were

> told the other day by the Dr. that Laikyn has one of the worst

> case's of RSS he has ever seen.What kind of hard road do we have

> ahead of us.I am writing this because my Daughter is busy working

> and trying to take care of her Daughter.So i try to find as much

> info and help i can get.I would appreciate any help at all. Please

>

> Thank you very much

> Sheldon

[Guest guest]

Sheldon,

I'd be surprised if Laikyn's RSS was more severe than Tim's. He was born at 3

pounds 5 ounces at 39 weeks gestation, and was 10 pounds at 1 year old. He was

on an ng for 21 months, then we weaned to squeezing a bottle to videos. We got

lots of cals in this way, but he still didn't grow much. When we got in what

the nutritionist thought he needed to catch up, he would just poop and vomit it

all out (vomiting the previous feeding at the next feeding!), so the geneticist

lowered the required cals once she realized that his body wan't programmed to

use them. Now he is on a g-tube and GH. It has been an excellent combination

for him! He went from 21.5 pounds at the beginning of the year before the tube

was placed to 28 pounds, and he has grown 2 inches as well! Many people start

both these treatments earlier (we waited until just before his 7th birthday!).

You may want to look into GH. The FDA just approved GH last year as a way to

catch up IUGR children, so you shouldn't have as much problem getting it

approved, yet not even my MAGIC-associated specialist knew about this, so you

may want to request the article from MAGIC and ask your daughter to show it to

her physicians herself.

Inga

At 09:14 AM 7/20/2002 +0000, you wrote:

>

> Hello everyone this is sheldon, laikyn's grandfather from Mandan

> N.D.MY daughter is very concerned about Laikyn's lack of weight

> gain.She was gaining about 5ozs a week and now the last 2 weeks she

> has gained only 3ozs.She was 3month's on the 10th of July and she

> weighes 5lbs8ozs and is 173/4 " long.She has a g-tube in her.Now the

> Dr. is talking about some type of a machine she will have to have so

> she can be continually fed all night.Does anybody know anything

> about those or have any suggestion's on what else we can do.We were

> told the other day by the Dr. that Laikyn has one of the worst

> case's of RSS he has ever seen.What kind of hard road do we have

> ahead of us.I am writing this because my Daughter is busy working

> and trying to take care of her Daughter.So i try to find as much

> info and help i can get.I would appreciate any help at all. Please

>

> Thank you very much

> Sheldon

>

>

>

[Guest guest]

Sheldon,

I'd be surprised if Laikyn's RSS was more severe than Tim's. He was born at 3

pounds 5 ounces at 39 weeks gestation, and was 10 pounds at 1 year old. He was

on an ng for 21 months, then we weaned to squeezing a bottle to videos. We got

lots of cals in this way, but he still didn't grow much. When we got in what

the nutritionist thought he needed to catch up, he would just poop and vomit it

all out (vomiting the previous feeding at the next feeding!), so the geneticist

lowered the required cals once she realized that his body wan't programmed to

use them. Now he is on a g-tube and GH. It has been an excellent combination

for him! He went from 21.5 pounds at the beginning of the year before the tube

was placed to 28 pounds, and he has grown 2 inches as well! Many people start

both these treatments earlier (we waited until just before his 7th birthday!).

You may want to look into GH. The FDA just approved GH last year as a way to

catch up IUGR children, so you shouldn't have as much problem getting it

approved, yet not even my MAGIC-associated specialist knew about this, so you

may want to request the article from MAGIC and ask your daughter to show it to

her physicians herself.

Inga

At 09:14 AM 7/20/2002 +0000, you wrote:

>

> Hello everyone this is sheldon, laikyn's grandfather from Mandan

> N.D.MY daughter is very concerned about Laikyn's lack of weight

> gain.She was gaining about 5ozs a week and now the last 2 weeks she

> has gained only 3ozs.She was 3month's on the 10th of July and she

> weighes 5lbs8ozs and is 173/4 " long.She has a g-tube in her.Now the

> Dr. is talking about some type of a machine she will have to have so

> she can be continually fed all night.Does anybody know anything

> about those or have any suggestion's on what else we can do.We were

> told the other day by the Dr. that Laikyn has one of the worst

> case's of RSS he has ever seen.What kind of hard road do we have

> ahead of us.I am writing this because my Daughter is busy working

> and trying to take care of her Daughter.So i try to find as much

> info and help i can get.I would appreciate any help at all. Please

>

> Thank you very much

> Sheldon

>

>

>

[Guest guest]

Sheldon,

I'd be surprised if Laikyn's RSS was more severe than Tim's. He was born at 3

pounds 5 ounces at 39 weeks gestation, and was 10 pounds at 1 year old. He was

on an ng for 21 months, then we weaned to squeezing a bottle to videos. We got

lots of cals in this way, but he still didn't grow much. When we got in what

the nutritionist thought he needed to catch up, he would just poop and vomit it

all out (vomiting the previous feeding at the next feeding!), so the geneticist

lowered the required cals once she realized that his body wan't programmed to

use them. Now he is on a g-tube and GH. It has been an excellent combination

for him! He went from 21.5 pounds at the beginning of the year before the tube

was placed to 28 pounds, and he has grown 2 inches as well! Many people start

both these treatments earlier (we waited until just before his 7th birthday!).

You may want to look into GH. The FDA just approved GH last year as a way to

catch up IUGR children, so you shouldn't have as much problem getting it

approved, yet not even my MAGIC-associated specialist knew about this, so you

may want to request the article from MAGIC and ask your daughter to show it to

her physicians herself.

Inga

At 09:14 AM 7/20/2002 +0000, you wrote:

>

> Hello everyone this is sheldon, laikyn's grandfather from Mandan

> N.D.MY daughter is very concerned about Laikyn's lack of weight

> gain.She was gaining about 5ozs a week and now the last 2 weeks she

> has gained only 3ozs.She was 3month's on the 10th of July and she

> weighes 5lbs8ozs and is 173/4 " long.She has a g-tube in her.Now the

> Dr. is talking about some type of a machine she will have to have so

> she can be continually fed all night.Does anybody know anything

> about those or have any suggestion's on what else we can do.We were

> told the other day by the Dr. that Laikyn has one of the worst

> case's of RSS he has ever seen.What kind of hard road do we have

> ahead of us.I am writing this because my Daughter is busy working

> and trying to take care of her Daughter.So i try to find as much

> info and help i can get.I would appreciate any help at all. Please

>

> Thank you very much

> Sheldon

>

>

>

[Guest guest]

Sheldon,

The machine is called a pump. It typically attaches to an IV pole on

which a bag of formula hangs. The bag of formula will most likely

be the same formula you are now using to tube feed Laikyn. A tube

hangs off the bag, gets threaded through the pump, and then attaches

to the extension tubing that you put in Laikyn's g-tube. The pump

lets the formula flow through the tubing at some constant rate.

You can set the rate to whatever rate she can tolerate. Typically,

you start very slowly...say, 1/2 ounce an hour....or 1 ounce/hour.

You slowly raise it (over many days and weeks) to whatever she can

tolerate. Some pumps have an intermittent feature that supports 1

hour of continuous feeding followed by a rest period, followed by

another hour of feeding, rest period, etc.

The pump has good and bad points to it. Mostly it was good for us.

Our daughters growth took a significant jump when we started it.

She tolerated the overnight feedings very well and so more formula

got into her body in each 24 hour period. Plus, it freed us from

having to wake up twice in the night to give her 4 ounce boluses.

The downside was that sometimes the tubing came apart and flooded the

bed. Also, the tubing sometimes kinks, causing the pump alarm to go

off. This can be annoying at 3 am! Lastly, was not hungry in

the morning because her belly had been full all night.....but that

didnt matter so much at that time because she wasnt really an oral

eater in those days.

all in all, the pump is a wonderful device for helping to put on

weight. Like the g-tube, it takes a little time to get used to it.

Irene

Mom to , 5 who now only uses her tube for 30% nutrition!

In RSS-Support@y..., " wobblyhog2002 " wrote:

> Hello everyone this is sheldon, laikyn's grandfather from Mandan

> N.D.MY daughter is very concerned about Laikyn's lack of weight

> gain.She was gaining about 5ozs a week and now the last 2 weeks she

> has gained only 3ozs.She was 3month's on the 10th of July and she

> weighes 5lbs8ozs and is 173/4 " long.She has a g-tube in her.Now the

> Dr. is talking about some type of a machine she will have to have

so

> she can be continually fed all night.Does anybody know anything

> about those or have any suggestion's on what else we can do.We were

> told the other day by the Dr. that Laikyn has one of the worst

> case's of RSS he has ever seen.What kind of hard road do we have

> ahead of us.I am writing this because my Daughter is busy working

> and trying to take care of her Daughter.So i try to find as much

> info and help i can get.I would appreciate any help at all. Please

>

> Thank you very much

> Sheldon

[Guest guest]

Sheldon,

The machine is called a pump. It typically attaches to an IV pole on

which a bag of formula hangs. The bag of formula will most likely

be the same formula you are now using to tube feed Laikyn. A tube

hangs off the bag, gets threaded through the pump, and then attaches

to the extension tubing that you put in Laikyn's g-tube. The pump

lets the formula flow through the tubing at some constant rate.

You can set the rate to whatever rate she can tolerate. Typically,

you start very slowly...say, 1/2 ounce an hour....or 1 ounce/hour.

You slowly raise it (over many days and weeks) to whatever she can

tolerate. Some pumps have an intermittent feature that supports 1

hour of continuous feeding followed by a rest period, followed by

another hour of feeding, rest period, etc.

The pump has good and bad points to it. Mostly it was good for us.

Our daughters growth took a significant jump when we started it.

She tolerated the overnight feedings very well and so more formula

got into her body in each 24 hour period. Plus, it freed us from

having to wake up twice in the night to give her 4 ounce boluses.

The downside was that sometimes the tubing came apart and flooded the

bed. Also, the tubing sometimes kinks, causing the pump alarm to go

off. This can be annoying at 3 am! Lastly, was not hungry in

the morning because her belly had been full all night.....but that

didnt matter so much at that time because she wasnt really an oral

eater in those days.

all in all, the pump is a wonderful device for helping to put on

weight. Like the g-tube, it takes a little time to get used to it.

Irene

Mom to , 5 who now only uses her tube for 30% nutrition!

In RSS-Support@y..., " wobblyhog2002 " wrote:

> Hello everyone this is sheldon, laikyn's grandfather from Mandan

> N.D.MY daughter is very concerned about Laikyn's lack of weight

> gain.She was gaining about 5ozs a week and now the last 2 weeks she

> has gained only 3ozs.She was 3month's on the 10th of July and she

> weighes 5lbs8ozs and is 173/4 " long.She has a g-tube in her.Now the

> Dr. is talking about some type of a machine she will have to have

so

> she can be continually fed all night.Does anybody know anything

> about those or have any suggestion's on what else we can do.We were

> told the other day by the Dr. that Laikyn has one of the worst

> case's of RSS he has ever seen.What kind of hard road do we have

> ahead of us.I am writing this because my Daughter is busy working

> and trying to take care of her Daughter.So i try to find as much

> info and help i can get.I would appreciate any help at all. Please

>

> Thank you very much

> Sheldon

[Guest guest]

Hi Sheldon,

My little boy is now 31 months old and weighs 9.5kgs- but at 3 months

weighed about 5and a half pounds (2.7 kgs)- just like your

grandaughter. He has only had a g-tube more recently though and is

fed continuously over night via a pump.

When he was an infant we tried everything to help him gain weight -

and then just had to settle for working really hard to prevent him

from losing weight. In hindsight a tube would have been of great

benefit to him as an infant.

So its really positive that your drs are being proactive in helping

laikyn to gain weight - so many kids on this list seem to have drs

who are happy just to " wait and see " what happens....

We did consult with a dietician from early on - perhaps your daughter

could request a referral - our dietician gave us great advice on how

to maximise calorie intake - she had Finlay eating solids from a

relatively early age - and she introduced high calorie supplements we

could add to his milk.

But if you are already tube feeding Laikyn then introducing a pump to

feed her continuously overnight is probably a logical next step - and

the bonus is it means you don't have to worry about the " nocturnal

hypoglycaemia " that can affect many RSS infants.

Hope this helps

Good luck with everything and keep us posted - everyone on this list

understands how traumatic it is to have a tiny baby who is just not

growing properly.

in New Zealand

mum to Finlay aged 2 and a half ( 81cm, 9.5kgs, g-tube, ?RSS) and

Logan aged 3 months

[Guest guest]

Hi Sheldon,

My little boy is now 31 months old and weighs 9.5kgs- but at 3 months

weighed about 5and a half pounds (2.7 kgs)- just like your

grandaughter. He has only had a g-tube more recently though and is

fed continuously over night via a pump.

When he was an infant we tried everything to help him gain weight -

and then just had to settle for working really hard to prevent him

from losing weight. In hindsight a tube would have been of great

benefit to him as an infant.

So its really positive that your drs are being proactive in helping

laikyn to gain weight - so many kids on this list seem to have drs

who are happy just to " wait and see " what happens....

We did consult with a dietician from early on - perhaps your daughter

could request a referral - our dietician gave us great advice on how

to maximise calorie intake - she had Finlay eating solids from a

relatively early age - and she introduced high calorie supplements we

could add to his milk.

But if you are already tube feeding Laikyn then introducing a pump to

feed her continuously overnight is probably a logical next step - and

the bonus is it means you don't have to worry about the " nocturnal

hypoglycaemia " that can affect many RSS infants.

Hope this helps

Good luck with everything and keep us posted - everyone on this list

understands how traumatic it is to have a tiny baby who is just not

growing properly.

in New Zealand

mum to Finlay aged 2 and a half ( 81cm, 9.5kgs, g-tube, ?RSS) and

Logan aged 3 months

[Guest guest]

Hi Sheldon,

My son Liam was 6.5lb at 3 months and he is now just over 13lb at 13

months. Liam had an NG tube and then a gastrostomy from 7 months. We

have a pump that feeds him overnight, the best thing about it is we

relaxed so much knowing Liam was getting enough calories. We have

used the trial and error approach with how much to give him, if the

pump is to fast he vomits at night, he is now on 45mls/hr and we try

to get between 10 and 12 hours, then during the day we offer bottles

or solids, then top him up with his tube to get his daily intake of

calories in(re our dietician).

One good tip feeding overnight is to keep the bed/cot tilted we find

Liam is a lot more settled.

I would say the first year was very hard, we had to learn to relax

and enjoy Liam, because for all the problems he was always the

happiest baby and still is.

I hope your daughter gets a chance to ask us some questions or just

read old and new news, this site has given me more information than

any where else.

Jody(mum to Liam 13.5lb 26.5in and Cameron 4y/o )

> Hello everyone this is sheldon, laikyn's grandfather from Mandan

> N.D.MY daughter is very concerned about Laikyn's lack of weight

> gain.She was gaining about 5ozs a week and now the last 2 weeks she

> has gained only 3ozs.She was 3month's on the 10th of July and she

> weighes 5lbs8ozs and is 173/4 " long.She has a g-tube in her.Now the

> Dr. is talking about some type of a machine she will have to have

so

> she can be continually fed all night.Does anybody know anything

> about those or have any suggestion's on what else we can do.We were

> told the other day by the Dr. that Laikyn has one of the worst

> case's of RSS he has ever seen.What kind of hard road do we have

> ahead of us.I am writing this because my Daughter is busy working

> and trying to take care of her Daughter.So i try to find as much

> info and help i can get.I would appreciate any help at all. Please

>

> Thank you very much

> Sheldon