Re: a feeding tube delima

[Guest guest]

,

My daughter Madison is 4 and 35 inches tall and only weighs 24 lbs and they

say she is severly under weight. She has a g-tube now and we are waiting on

word from the sergeon about placeing a J tube. She only gets suplemental feeds

over night but I'll be honest with you it's a big difference.

Your child may need to come off the GHT thats what they had to do with our

Madison and as soon as they stopped that we begane to gain wait. Have you ever

met with Dr. Harbison? Thats who made the finale dicison for our daughter and

we were so upset and didn't want to put her through it but it was the best

thing we ever did.

Hope this helps a little,

Chrissy

P.S

Have you ever monitored Madison's sugar?/ That may be her problem she may be

having low sugars.

[Guest guest]

>

> ,

> My daughter Madison is 4 and 35 inches tall and only weighs 24 lbs

and they

> say she is severly under weight. She has a g-tube now and we are

waiting on

> word from the sergeon about placeing a J tube. She only gets

suplemental feeds

> over night but I'll be honest with you it's a big difference.

> Your child may need to come off the GHT thats what they had to do

with our

> Madison and as soon as they stopped that we begane to gain wait.

Have you ever

> met with Dr. Harbison? Thats who made the finale dicison for our

daughter and

> we were so upset and didn't want to put her through it but it was

the best

> thing we ever did.

> Hope this helps a little,

> Chrissy

> P.S

> Have you ever monitored Madison's sugar?/ That may be her problem

she may be

> having low sugars.

>

>

>

[Guest guest]

hi sissa!!

my son christopher is also 4 1/2 and he is 30lbs and 38 1/2 " he is

also on ght (started in jan) but he is also on periactin (you didnt

mention it so i am not sure if she is taking that as well) kids on

ght need to take in 1 1/2x's more calories than what they are

normlaly suppose to take in to grow properly on the ght. on reason

she may also be tired so much is that maybe her BS is dropping

during the day at school? christopher is also in Pre-K but we have

an IEP for him that states he is to have atleast 2 snacks while he

is there and/or be fed on demand. this way esp. if i wasnt able to

get much in him be for he goes in the morning i know he will have a

snack at 9am and at 11am, but if he also decides at 10am that he is

hungry they have to allow him to eat something. i even pack them

the extra snacks. maybe you should also see about going to nyc to

have an appt with dr harbison? she will be able to tell you whether

going with a feeding tube is the right option or not. i can say

whether it is or isnt, christopher doesnt have one, but maybe you

just need to increase her calories in other ways instead. also you

might what to look into getting her a flu shot. good luck!

jodie c

[Guest guest]

,

Max did not get his g-tube until he was 5. It really was not a big

problem at all. Of course, he was ng tube fed until then, so he was

used to pump feedings, but the surgery itself was much easier on him

than I ever thought it would be. That does not mean I did not cry and

worry and fret. But in the end, it was the best thing we ever did for

him.

The difference between a g and a j tube is simple. A g tube is a

gastric tube - it goes right into the stomach. A j tube is a

jejeunostomy tube - it bypasses the stomach and goes into the large

intestine. Max has had both. The j tube has been used when he has

not been able to tolerate the g tube feeds. Fortunately he did not

need another tube placed. They make a tube that has both in it with

two different ports. We just used whichever one he needed at the time.

Chrissy was telling you about her Madison stopping the gh because Dr.

H. does not believe in using gh when the kids are calorie

deficient. " They can't grow on air " is what she says. The kids need

to make up their calorice deficiencies and achieve catch-up growth

from the extra calories and nutrition before the gh can be used

effetively. If you give gh without that makeup, then it is a waste of

time and money.

I know you are worried about your Maddison. I know it is scary. But

you already know what you have to do. You are just afraid to take

that first step. But let me assure you that once you follow through

with it and face that fear and do what Maddison needs, you will be

amazed by the difference in her health, her looks and her energy.

If you have more questions, please feel free to ask.

Jodi Z

[Guest guest]

hey sissa!!

christopher doesnt have to gut dismotility issues either. when was

the last time her periactin dose was adjusted? did she start the

periactin and ght at the same time or was she on it before the ght

(did catch up growth on the periactin and then started the ght with

it?) would you be able to see dr h 2x a year? that is what alot of

her patients that live far away do and then she works in conjunction

with their other endo. our first endo put christopher on ght too

early (he hadnt did his catch up growth yet) so he was growing but

losing weight. so then we went and saw dr h and she stopped his

ght, we then just did the periactin for almost a year (with it being

adjusted for his weight gains every 3 months) and he gained over

3lbs and grew over 2 " !! she then restarted his ght this past jan.

he has since grew over another 3 " and gained 2lbs. she may not

really had a problem with hre BS before because she wasnt in school

so she was grazing throught the day, now that she is in school she

is not doing that. plus like i said in the other post kids on ght

need to taken in 1 1/2x's more calories than what they normally take

in so that makes a difference as well. we never really had to worry

about christophers BS either but recently he has been becoming

symtomatic from even a small drop (say it is 75 he gets tired,

cranky, glassy eyed) i have to now start testing his sugar. also

wih the periactin (so believe it works and some dont) but i give him

a periactin holiday every once i awhile for say a week or the

weekedn (depends on the time of year because it also helps with his

allergies) and then restart it, he seams to have a pick up in his

appitite then. but i would really look into going to see dr h

first before the tube, just my opinion because there may be other

thins you can do or need to do instead. someone else from the list

thought they wee going to have to do the same thing with their child

who is the same age and after going to dr h found no at this time

they didnt need to they just needing to adjust the calorie intake.

good luck!!

jodie c

> Thanks for responding so fast. At what age did she get her

feeding

> tube. My Maddison doesn't have those gut dismotiliy problems that

a

> lot of the others seem to have. She takes Zantac and periactin

and

> ght since january of this year. Why would the ght make a

> difference? Please explain why she might need to stop. Her endo

> said it should help her appetite but it didn't. Did her gastro dr

> not think your madison needed one first or who should be the one

to

> decide that? We haven't been to the convention in two years. But

> then we did see her and she didn't say much of anything about her

> weight then, I think it was better when she was younger. Tell me

> about the difference between the j and g tubes and why one over

the

> other. Does your Madison go to school or pre k? How will it

affect

> her eating food in the day, I don't want it to make it harder for

> her to eat food that is what we are affraid of and are trying to

> fix. What should her weight be? Yes we have monitored her sugar

> before a long time ago and she didn't seem to have a problem with

it

> then or now. Does your daughter eat soild food to? Does she have

> more energy? Where do you live and is dr h your dr. How or why

did

> she decide for the tube. Does she talk to people that aren't her

> patients. I just can't fly to new york every three months!!!

>

> Thanks

> Tolbert

> mom to Maddison 4 1/2 yrs 24lbs 38 in

>