From Far Rockaway, New York, USA:
Our eight month old son was diagnosed with nesidioblastosis and had a sub-total pancreatectomy by the time he was six days old. Other significant medical information includes a cordal prolapse at birth, seizures after birth, hydronephrosis, hydrocele, maddeningly slow motility, and reflux. He was born six weeks early by crash C-section (I was induced because of severe polyhydramnios, PIH and edema on the baby's scalp).
He had a rather difficult recovery from the surgery (he was left with a direct hernia) and was treated with glucagon, somatostatin, diazoxide, HCTZ, phenobarbital, steroids and dextrose for several weeks. At one point he was actually weaned from all medications, but then diazoxide, HCTZ and phenobarbital had to be restarted (his sugars dropped and a focal seizure was observed). He came home at nine weeks of age on many medications.
From the beginning our son was unable to eat. He varyingly spit up bile, or wouldn't suck and therefore spent a lot of time on IV fluids and no oral feedings. Eventually he could tolerate formula (which we supplement with Polycose), but didn't suck well enough to eat significantly. Nasogastric tubes were used frequently, and we were strongly urged to allow the hospital to implant a feeding tube, which we refused.
After eight months, our son still does not eat properly. He has had upper gastrointestinal series and barium swallows which confirm reflux and no obstructions. Although he is on Zantac liquid (1cc bid 15mg/ml), Propulsid (1.4cc as much as qid), Mylanta (2.5cc qid) and gets oatmeal into his formula, and the reflux seems to have subsided, he still doesn't eat! He's been under the care of an excellent Feeding Therapist who finds him a total enigma. (It was her idea to search the Internet.) He will happily put into his mouth anything that is not meant to be digested . She can probe his mouth and do all sorts of stuff that would send the usual feeding problem child into fits of gagging and vomiting, and his just smiles charmingly at her. But give him anything edible of any flavor or texture or consistency, and he clamps his mouth shut, arches, screams, gags or vomits.
His usual daily intake of formula varies from as little as 12 ounces a day to as much as (rare though it is) 20 ounces a day. The usual intake is roughly 15 ounces. Calorically he gets 150% ounce per ounce because of the polycose and oatmeal. We end up giving him little bits of formula round the clock (which, truthfully, is probably better for his sugar than full bottles at intervals of several hours).
He has managed to continue to put on weight although his percentile is very slowly slipping. He maintains his height curve. He LOOKS very chubby, but is actually off the bottom of the charts. (I've been told that since insulin generates fatty deposits and growth hormones he looks chubby.)
His sugars are fairly stable, mostly in the 60's, on rare occasion in the 50's, and sometimes in the 70's and 80's. His hydronephrosis looks like it will resolve itself, and he may be weaned from the Phenobarbital within the next few months. Although he is physically delayed, he appears to be of normal intelligence. He was fortunate to have been detected so early and so beautifully managed by an incredible team of caring people at the University's NICU unit - our gratitude is boundless. But he still doesn't eat!
What percentage of nesidioblastosis patients have feeding problems? How is it handled? When does it resolve? Is there a support group?
I have seen this type of problem in a number of kids with your son's problem. There are a couple of reasons:
- Often, these infants are "force fed" i.e., made to eat even if they aren't really hungry in an effort to make sure blood sugar levels stay up;
- Picky eating is not unusual among lot of babies without your son's health problems.
I would strongly suggest you work with a developmental psychologist to help you deal with difficulties. Also, look at Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace by Betty Brackenridge and Richard Rubin, a book about feeding kids with diabetes, which might be of help.
Original posting 16 Jan 98
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