Re: @WL $WL Willies next step*long*

[Guest guest]

Hi Kathy,

Just a couple of questions....

1) Does Willie still take Periactin???

2) Have you tried a PPI like Prevacid, Prilosec or Protonix either with the

Zantac, or alone???

3) Are you using any calories boosters like DuoCal or Polycose???

In answer to your questions...

1) was placed on a NG before surgery, BUT he was only 8.5 months of

age, and extremely malnourished and catabolic. If we hadn't lived so far

away, she would have kept him in longer, pumping him up as much as she could

before surgery. As it was, we still ended up spending 3 weeks in NY, when we

were only planning on being there for 3 days!

2) We use the Zevex Enteralite pump, and is on EleCare 30kcal/oz for

formula. This was prescribed by Dr H, but I have no idea why she chose this

particular formula.

Zevex has just introduced a new, smaller, lighter weight pump called the

Infinity, that I would like to try for , but since Medicaid has paid

for the Enteralite, I don't think we'll be able to switch.

We've used the Kangaroo " Pet " but I wouldn't recommend it for anyone!!! It

runs on a drip count system, so it can't be tilted in any direction other

than straight up and down, and it alarms far too often for any active child

to use!!

3) is severely hypo-g, and as long as his feeds run well, his BS is

usually between the recommended 80-120. We still have problems whenever he

gets sick, or his feeds don't run corrected for a prolonged period.

The placement of his g-tube literally SAVED 's life, and it's not

nearly as terrible as you will imagine before it's done. It's become such an

integral part of him, that I can't imagine Bran without it now! LOL

Good Luck!

Pat (g-ma to , RSS, 3 yrs 6 months old, 23#, 33 " , G-tube, GHT)

[Guest guest]

Hi Pat,

Thanks for the help. Yes, Willie does still take Periactin. We tried

solutabs of the Prilosec, Prevacid and Zegerd. The sensation flips him out and

he

rubs his tongue like crazy. Then we tried to mix it w/ a little baking soda and

water to no avail. Our insurance won't pay for it to be compounded but our

GI is getting us a comp month's worth to see if it helps any.

We had a little luck w/Duocal when he still took formula but he eliminates

foods if he detects textural or taste differences in them. For instance, cream

or Benecal in his mac and cheese will remove that food from his menu. We keep

trying milkshakes w/Instant Breakfast or Benecal but haven't had much

success. I bought a snow cone maker thinking I could shave the high-cal

Resource

drinks over ice. These things make me more than a little cuckoo. I just wish

he'd take a 300 cal drink a couple times a day and I could continue my creative

(crazy) and all-consuming snack-making. Ultimately, though, I wish he'd take

in enough cals. We are going to New York in July to see Dr H. Last year at

the convention she said it wasn't time for a gtube. Maybe I just need the

relief. His BMI is below 15% now.

Thanks for listening and always giving such good advice,

Kathy