Re: Finlay.....help!!!

[Guest guest]

,

Poor guy, those bugs are the worst. My daughter had the roto viruse in

April and lost a kg. She too has a G tube and I would try continuous feeds

before another surgery. ALyssa is on for 18 hrs a day at 55cc/hr. We have

modified it to 65/hr during the day and 50/hr at night because it made her

morning vomitting go away. She tolerates this much better.

We take ALyssa off her pump for 2 hours at each meal. 1.5 hrs to get some

hunger (or less full anyway) and then meal time and back on the pump. When

we first started this regimen she gained 2 kg in about 7 weeks.

However you can get more calories/day in him without causing him discomfort.

I would start with continuous feeding if it were me. What do you have to

lose:???

Best of Luck!!!!

Dayna, Mom to Alyssa 32months, 11.3kg and 90cms

Finlay.....help!!!

Hello Everyone :-)

I haven't posted for AGES...but I'm hoping some of you will remember

me ;-)

I've got so behind on all the emails on this site but have been

meaning to catch up for a long time now...and now, instead of being

in a position to offer support to this list I have a Finlay crisis so

I am writing to ask for your collective wisdom/advice/help.

Finlay is now 4yrs 6mths old. He has a Gastrostomy. He has been on

GH for 4 mths - growing really well. His weight gain has been

minimal and he is now very very skinny. Right now he is in hospital

with IV dextrose. He has had a vomiting bug and his blood sugar was

very low. The vomiting has stopped but he needs to be on the IV

until he can tolerate his normal feeds again. Needless to say the

bug has meant he has lost even more weight and now everyone is really

concerned about how to get him to gain weight. He is 97cms and

12.1kgs.

He does not tolerate much in the way of bolus feeds - he gets gassy,

bloated, and vomits. We have tried changing his feed (he is on

pediasure) but for various reasons he has not tolerated any other

feed offered (including vivonex, pept jnr, fortini, nutrini)

We need to do something drastic and we are looking at

Putting in a g-j tube

Putting him on continuous day time feeds

I know some of you are doing these things and I'm wondering how they

work logistically and also how effective you have found them in terms

of short term weight gain. I am confident I can maintain his weight

under the current regimen - (2 -3 hrly boluses and continuous

overnight feeds) so I want to boost his weight in the short term

then maintain that new weight using our current regimen.

Realistically I need him to gain 2kgs.

Has anyone been there done that?????

Any thoughts..

Thanks heaps

(in New Zealand, Finlay RSS, 4yrs 6mths, 97cms, 12.1kgs, g-tube,

cisapride, growth hormone and Logan 2yrs 4mths, none of the above!)