continuous pump feeding protocol?

[Guest guest]

Apologies for the bulk messages and I promise this is my last request. It's

after 1 am but if I don't send this out now, I don't know when I'll next get a

chance.

Due to his volatile blood sugar issues, has been put on continuous pump

feeding 24 hours partly due to my explanation of what little I know of Dr

Harbison's regime. At 8 kilos and 3.5 years, I think fits into the very

small RSS children category but I don't have much experience/knowledge. Is there

a rough protocol for pump feeding for RSS children (individual requirements

aside) in terms of starting off on 24 hours, daytime only, nighttime only,

pumping rates, how long each stage lasts etc. I get the impression that Dr

Harbison has developed experience here and I apologise for asking info on it

third hand. basically ate nothing by mouth, now would be prepared to eat

something but probably needs to stabilise his blood sugars first.

thank you and I promise to try and contribute something to the list once

gets on an even keel.

Debi, mother to in Japan(3.5 years, RSS, 8 kilos, 83 cm) and Sora (6

months, non rss, 8 kilos, 65 cm)

[Guest guest]

Debi,

I am going to try and answer as many questions as I can at once.

1. Regarding the insulin issues - that is not one that has

had. Pat, 's grandma has been dealing with this issue for a

long time and hopefully can help you. B is also on continuous pump

feeds.

2. Right after the surgery for his gtube, Dr H wanted on

24hour feeds but he was eating so his protocal was slightly

different. I know that she goes right to 24 hour feeds after

surgery, so there should be no problem doing that with now.

However, her instructions were to take him off the pump every 6

hours and vent him for 15 minutes. That is, using a venting

syringe, let the air bubbles out of his stomach.

3. is now down to overnight pump feeds (8:30 pm to 6:30 am)

with two daytime bolus feeds of 110 ml. He eats three meals a day

plus snacks.

4. The US home care supply place that we currently use (for pump

supplies) is Apria. Their phone number is .

5. Have you tried calling Dr H?

Good luck,

Judith, Steve, (RSS) and (non RSS) 5 year old twins

[Guest guest]

Hi,

I can't offer any advice on any of your posting but wanted to let you

know you will be in my thoughts.

, mom to 5 and Emerence 2, RSS/SGA 20lb 11 oz 31 "

> Apologies for the bulk messages and I promise this is my last

request. It's after 1 am but if I don't send this out now, I don't

know when I'll next get a chance.

>

> Due to his volatile blood sugar issues, has been put on

continuous pump feeding 24 hours partly due to my explanation of what

little I know of Dr Harbison's regime. At 8 kilos and 3.5 years, I

think fits into the very small RSS children category but I

don't have much experience/knowledge. Is there a rough protocol for

pump feeding for RSS children (individual requirements aside) in

terms of starting off on 24 hours, daytime only, nighttime only,

pumping rates, how long each stage lasts etc. I get the impression

that Dr Harbison has developed experience here and I apologise for

asking info on it third hand. basically ate nothing by mouth,

now would be prepared to eat something but probably needs to

stabilise his blood sugars first.

>

> thank you and I promise to try and contribute something to the list

once gets on an even keel.

>

> Debi, mother to in Japan(3.5 years, RSS, 8 kilos, 83 cm) and

Sora (6 months, non rss, 8 kilos, 65 cm)

>

>

>

>

>

>

[Guest guest]

Hi Debi

we are in Australia and am not familiar with the Dr Harbison

protocol but my son Charlie who is 21 months old, has a g tube and

also severe hypoglycemia so I thought I could contribute what we do

to control this. He does not eat anything orally.

Charlie is fed on an overnight pump and is currently tolerating

48mls per hour for 10 hours. We turn the pump off at 5.30am and find

that if he has another hour of sleep without being fed in that hour,

he is less likley to vomit on waking. He then has 2 hourly bolus

feeds throughout the day of 45 - 50 mls. He weighs just over 7kgs.

When he first had the tube placed at 13 months, he started on 10

hours overnight of 35mls and we increased by 5 ml increments to what

he currently tolerates. He initially started on 4 hourly day feeds

but his blood sugars dropped too low between feeds. If we leave a

day feed longer than 2.5 hours, his sugars start to drop.

Hope this helps in some way and all the best with this really tough

time you are going through.

regards

Alison ( 3.5 yrs and Charlie 21 months 7.3 kgs, 68cms RSS upd 7

G tube)

> Apologies for the bulk messages and I promise this is my last

request. It's after 1 am but if I don't send this out now, I don't

know when I'll next get a chance.

>

> Due to his volatile blood sugar issues, has been put on

continuous pump feeding 24 hours partly due to my explanation of

what little I know of Dr Harbison's regime. At 8 kilos and 3.5

years, I think fits into the very small RSS children category

but I don't have much experience/knowledge. Is there a rough

protocol for pump feeding for RSS children (individual requirements

aside) in terms of starting off on 24 hours, daytime only, nighttime

only, pumping rates, how long each stage lasts etc. I get the

impression that Dr Harbison has developed experience here and I

apologise for asking info on it third hand. basically ate

nothing by mouth, now would be prepared to eat something but

probably needs to stabilise his blood sugars first.

>

> thank you and I promise to try and contribute something to the

list once gets on an even keel.

>

> Debi, mother to in Japan(3.5 years, RSS, 8 kilos, 83 cm) and

Sora (6 months, non rss, 8 kilos, 65 cm)

>

>

>

>

>

>