Irene's long response to moving night time boluses to the day

[Guest guest]

Hi ,

I read your post. It sounds like you have lucked out with excellent

feeding therapists! And, I even think it is a good thing to switch

after reaching new plateaus...which Colin certainly has. A new

perspective is always helpful. A new therapist won't have the same

challenges (say, oral aversions) that the first one was focused on.

She/He will have a fresh assessment and new focus.

I have heard of the suggestion to move the feedings into the

daytime. I think Pat is right that you should check it out with

your doctor regarding the hypoglycemia. But if that is OK (and it

was for our around 3-4), it makes a lot of sense.

There are so many goals that we have to juggle as we transition our

tube-fed kids to oral eating....nutrition, calories, desensitizing,

oral-eating, normalizing the caloric intake, etc.! I often find it

overwhelming and pick just one or two to work on... It seems like

Colin has overcome a lot of his oral aversions, has oral skills, and

shows signs of hunger and even preferences. So working on

normalizing the hunger cycle (full/empty/full/empty) seems like an

appropriate thing to me, anyway.

For us, I found it challenging because at that stage wasn't

able to tolerate much volume, and the overnight feeds were my 'sure

thing' in the calorie dept....rarely vomited in the night. So I

hated to part with those dependable calories and transition them to

the less predictable day time.

But, in the long run, it is a real goal...and I think it is pretty

advanced one in the weaning dept! And, once you get to 3 or 4

boluses, your next step is a more gradual and easier-to-manage

cutting back on each tube-feeding, hoping to replace it with Colin's

own eating. I know this is considered the more natural hunger

cycle.

It will probably result in a small step backward in the oral intake

for some period of time, but that could be your chance to let Colin

work on new foods or let him have more choices in what he does

eat.

All in all, I'd say it is a big milestone to have reached this

point! Congratulations to both of you.

Irene

Mom to , 6, who is still getting one can of formula through her

g-tube on most days, and working on jaw strength and stamina after a

probably too-long hiatus from feeding therapy.

> Hi ,

>

> I think the new feeding therapist's ideas are interesting, but I

would be

> worried about hypo-g, going all night without feeds. My

understanding is

> that hypo-g doesn't just go away, the child has to attain a certain

> percentage of body fat? seems to have the body fat now, but

his

> hypo-g is worse than ever. He drops 20-30 BSLs in a 1/2 an hour to

an hour

> off feeds.

>

> Personally, I would go with Dr H, or have the feeding therapist

call her,

> and ask about her plan on dealing with Colin. I trust Dr H, she's

never been

> wrong with , even if the Drs here haven't always agreed with

her.

>

> Hope this helps.

> Pat (g-ma to , RSS, 23 months, 20# 4oz, 28.8 " , Prevacid,

Zantac,

> Singulair, GT)