Re: when do things get better?-Debi

April 4, 2005

Debi,

I am so sorry to hear about all the troubles you and are experiencing.

It's so hard on both the parent and the child when things go wrong

medically.

From the way you describe ' pylorus sphincter, it sounds like he's

developed dumping syndrome. From what I've read, the rapid " dumping " of food

triggers the pancreas to release excessive amounts of insulin into the

bloodstream. This would explain why ' blood sugars drop when he eats.

The only treatment that I've heard of for dumping syndrome is eating

smaller, more frequent meals and limiting fluid intake. I think you're on

the right track with trying to increase his oral intake of solids, but I'm

not a doctor, and I have nothing but my research to back up this idea.

My grandson, , is on continuous feeds. He is currently running a

slightly higher pump rate during the day (34cc/hr) than he does at night

(26cc/hr). He uses the Enteralite Zevex pump (recommended by Dr H), although

I would love to see him get the lighter version, Infinity. Dr H told us that

we needed to shut off the pump, and vent him 4 times a day, for 15 min

intervals. This is supposed to be his only time off the pump.

copes with this situation very well. We converted a two compartment

camera case into a backpack. The front compartment carries the formula bag,

and the rear compartment holds the pump. This solution has worked very well

for us. When he's not wearing his backpack, he generally picks it up and

carries it, or drags it around behind him. For this reason, we secure the

tubing to the front of his diaper with tape, so that he doesn't pull on his

button.

I would like to second the suggestion that you, or your doctors, try to

contact Dr H in NY. I am hoping that someone else here on the list serve has

her current phone number??? She has made several medical recommendations for

even though we live 350 miles away, and she's always been right! She

has a knack for instinctively knowing what the RSS child needs!

Please feel free to come and vent anytime. You are in an incredibly

stressful situation, and you need all the support you can get. I'll keep

in my thoughts and prayers. Please keep us updated on his situation.

Hugs for you both!!

Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm),

G-Tube)

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