Re: Willies next step*long*

[Guest guest]

hey kathy!!

i am sorry to hear willie is still having a tuff time gaining weight!!

this is one of my worries with christopher as well!! i think he has

only gained about 1lb since we saw dr h in may. she restarted his ght

in jan and he only had maybe a 1lb gain from jan-may. i am waiting to

see what happens when we see her at convention. you know in your heart

that you are making the best decision for willie, no matter how hard it

was!! let me know how you make out, ok!! i have been wondering how he

was doing because him and christopher were pretty close in stats for a

long time. ((HUGS))

jodie c

[Guest guest]

Kathy,

It is not uncommon for GIs to want to try an ng tube first to see if

the feeds are tolerated and how the child does. This was done with

Max and we learned a lot from that. I think it is good medical

practice to try something that is non-surgical before going in and

being so invasive. But that is just my point of view.

It is also not unusual for a child to stay in the hospital for

several days to make sure that feeds are tolerated and that the

formula is the correct one. Usually once the tube feedings are

started, you use a mix of water or Pedialyte and the formula,

gradually increasing the strength of the formula over hours or

days. The rate is slowly increased as well.

I hope this helps you a bit. I think your GI is making a lot of

sense and is not being overly cautious. If you rush things, then

you may only have setbacks.

Jodi Z

[Guest guest]

Hi Jodie,

Willie gained okay for awhile after seeing Dr H last convention (increased

Periactin and adding Zantac?) but hasn't gained anything in 4 months.

Actually, he did gain back what he lost to the flu but w/o a high-cal drink he

seems to just (barely) maintain his weight and not add to it. He's 25 lbs, 3

less

than .

Have a great time at the convention.

We'll miss you.

Kathy( Willie, RSS , 4, Periactin, zantac, ght, 25 lbs and 91 cm and Jack,6))

[Guest guest]

Hi Kathy,

I see you have already received a lot of good advice. I just wanted

to reiterate what Pat said about the tube not being such a big deal

once it is placed. It is hard to get used to at first and a little

daunting, but once you learn how to clean it and take care of it, it

is just another part of the routine. Like Pat said, I couldn't

imagine without his, and I will be one of those moms who

doesn't exactly jump up and down for joy when it comes time to take

it out. ) I will be happy, but I will be scared all at the same

time. Because, like , the tube saved . Well, he had the

NG tube placed at birth and then a g tube placed at 6 1/2 months

old. He didn't even thrive on it then because his reflux was so bad

and he was in a lot of pain. I think it was the formula and how much

they were trying to cram in him. But, once he saw Dr. H and she put

him on a strict feeding schedule and rates, he began to gain all

kinds of weight and became so much stronger. is also on the

EleCare formula mixed at 30 cal/oz., and I don't know why this type

of formula except that it is easy on their systems and if they are

allergic to milk this is a great formula. You can check out their

website and read all about it.

Anyway, I just wanted to say that what Jodi and Pat said is all great

advice and if Willie needs a tube, Dr. H will be the one to tell

you. If you have exhausted all your options, then maybe this is the

best, less stressful way for everyone. I am sure it is hard on you

seeing him not gain. See what Dr. H says and go from there. But,

all in all, the tube isn't that bad. And yes, he will have to be in

the hospital for a while because they do need to watch him to make

sure he tolerates the tube and also the formula they put him on.

They should start off with Pediasure first and then mix it with

formula. Once he is on the formula and tolerating it, they will

slowly increase him on his feeding pump until they get him at a

decent rate to send him home. They will probably have you continue

to increase his rate until he reaches his target rate goal. Also,

usus the Zevex Enteralite pump. I have heard bad things about

the Kangaroo pump. I know Zevex has their new Infinity pump, but I

odn't know how it works.

Sorry this got so long, but I wnated to tell you all this and let you

know that we are thinking about you and let us know what Dr. H says.

Jodi R.

's mommy

p.s.~ gets on that trike every so often, but for some reason

that his been one of the things he has to overcome. In therapy they

always tried to get him to ride a trike or car and he was always

scared! He gets on it and pushes around with his feet. He is so

cute on it! ) Thanx!

> Hi Everyone,

>

> Willie is almost 4 and a half. At 3 he was diagnosed by Dr Harbison

w/ RSS.

> At first the perictin was great. Then maybe the Zantac helped. He

was

> gaining well by his previous standards and closing that weight-for-

height gap

> nicely. Last year at the convention, Dr HArbison thought he'd be

ready for growth

> hormone by the end of the year. We started in April. Here's the bad

part:

> he's no longer gaining. Until March he still took formula(bottle)

at 30 cals/oz

> and we used it after meals, whenever the intake was down. It saved

us as he's

> always refused any other milky drink (no Pediasure, no smoothies,

no

> milkshakes). Then his new gastro ordered an Upper GI and put the

barium in the

> formula. No more formula for Willie. Then the flu. Down 2.5 lbs

total and has over

> 4 months gained it almost back but no more. Even w/ starting ght.

So...

> we 're scheduling a gtube insertion. We'll see Dr H first but I

think we're

> ready...

> 1) Have your doctors inserted the NG first? with what results?Our

gastro

> wants to insert the NG and keep Willie in the hospital a couple

days to watch

> him before the GTube is inserted then keep him another day or two

to watch

> that. Is this pretty common? Necessary?

> 2)What pumps and formulas do you guys like?

> 3) Do the gtube feedings help keep the blood sugar more stable?

> Thanks for any info you can give me. That Dr H visit goes so fast.

THE more

> we know going in the more ground we can cover, you know? Any info

positive or

> negative would be so very appreciated.

> Thanks you , thank you!

> Kathy (Willie, RSS, 4, Periactin, Zantac, ght, 25 lbs, 91 cm and

JAck, 6,

> non-RSS)

>

>

>