Re: Fwd: Re: tube delima to chrissyl scroll down past my firs...

[Guest guest]

,

Madison got put on the G tube feeds at 6 months, Dr. H was the one who made

that decision. Our Gi doc at home had her on NG feeds ( through the nose ) But

she still couldn't gain weight. Her appetite is terrible but thats not from

the the G tube she has failure to thrive so getting her to eat is always a

struggle it sounds like that might be whats going on with your Madison. If they

are on continious feeds sometimes that will interupt with oral feeds but not

usually when it's only supplemental feeds ( over night ). Usually when they

first start out on the tube they are continiuos Dr. H told us that they do

that so they belly gets used to the feedings then as the child begins weight

gain they will cut it back slowly untill they are only over night.

Madison started on GHT last year, this made her stop eating, stop gaining

weight and she bagane earlie signs of puberty. Dr. H took her off of GHT and

said she wasn't ready yet that her weight has to be better or it's usless. Also

Dr. H said Madison wasn't a canadait for periactin she doesn't feel that it

will be effective with her. Sometimes periactin can stop the child from eating

instead of helping and thats what she feels would be the out come for our

maddy. I'm not sure where her weight should be but what I do know is my 2 year

old is right where he should be for his weight and height and he weighs 35lbs

and is the exact same height as maddy.

The difference between the G and J tube is the G goes into the stomach anbd

the J passes the stomach and goes into the Intestines ( i believe ).

Right now Madison has a G tube but can't handle a large volume she vomits.

So now we are goning to do the J tube because that won't make her feel full and

she will still be hungry and want to eat she also won't vomit these feeds.

Madison never had a problem with her sugars untill she was 1. It hust

started out of no where. And it's currently her biggest problem.

We live in Philadelphia Pa. and we are about 2 - 2 1/2 hours from NY. When

Maddy is well we don't see Dr. H every 3 months because we have 3 other kids

and it m akes it very difficult. We have been there more recently because

Madison hasn't been doing very well and our docs at home can't really handle

her.

Madison isn't in school yet only because all her problems that we are going

through now begane in August so she never started Pre - K. School HAVE to

adjust to your childs needs we didn't find this out untill we were in the

hospital in August and Jodi Z came to see us. She is a teacher and she wa

explaining to me what the school has to do for your child. If you post a message

for

her I'm sure she can shine some light on that suject for you.

In answer to your question about energy Madison has alot of energy she never

stops but this may be becasue she has 3 brothers. If I see her falling

asleep during the day ( since she never naps ) or if she gets really quiet then

I

know her sugar is low.

Where are you from??

If you have any more questions please do let me know and again you are also

welcome to call me anytime.

Chrissy

mom to

Louis 6 Madison 4 Shane 2 1