Question from Eugene, Oregon, USA:

I have been trying to get to the bottom of my two year old daughter’s for several months. We are getting nowhere and losing hope. I thought perhaps that you will have some sort of idea of what might be going on, since part of what we are seeing is intermittent high blood glucose after feedings. Sorry in advance for the length; her history is complicated.

My daughter was born with a lymphatic malformation of the right side of the face and neck that necessitated a tracheostomy at six weeks old. This led to feeding problems and a G-Tube was placed. We began having problems with severe reflux and she was switched around on various formulas: Enfamil, to Carnation Goodstart, to Nutramigen, to Neocate One. Each switch seemed to help for a while and then the reflux would worsen again. We were told by her pediatric GI specialist that she would likely grow out of it by one year of age. She didn’t and the reflux intensified despite attempts to control it with diet, medication, and positioning. She had a Nissen Fundalplication at age one and a half. That stopped the vomiting but a new pattern emerged.

Literally every two weeks like clockwork, she would suddenly start becoming lethargic with feedings. Symptoms would progress to include gagging and retching and cold sweats, to the point of soaking all of her bedding and clothes. The lethargy intensifies until she is literally sleeping 15 to 20 or more hours a day, basically sleeping during feedings and for a while after each feeding, with a brief rally in between feedings. I kept telling her pediatrician that it looked like Dumping Syndrome, but couldn’t fathom how it could be that since her feedings are given with a pump over 45 minutes. I tried slowing the feedings down to a continuous feed and it made it worse. With a continuous feed, she would just fall asleep and stay asleep with lots of gagging and retching and continuous cold sweats.

The first few times I was told she probably had a touch of the stomach flu. It seemed like a reasonable explanation since she returned back to normal in two to four days. Then, it kept happening every two weeks. Once she had a urinary tract infection concurrent with an episode so, that was the explanation we were given for her symptoms. Another time she was teething and we were told that teething could make kids nauseated. The explanations were ceasing to make sense. Then, she had a rash of episodes with no other concurrent illnesses or issues. Repeat testing for recurrent urinary tract infection was negative on two additional separate occasions.

During one episode, I took her in to her pediatrician and requested blood glucose levels during a feeding. Here are her actual levels:

Immediately prior to feeding, following a 12 hour fast: 99 mg/dl [5.5 mmol/L]

Twenty Minutes into a 45 minute feeding: 174 mg/dl [9.7 mmol/L]

Immediately after the end of a 45 minute feeding: 236 mg/dl [13.1 mmol/L]

One hour after the end of her feeding: 150 mg/dl [8.3 mmol/L]

During this feeding, she was generally lethargic. Her hand would fall limply if you picked it up and dropped it. She would rouse slightly at intervals and whimper while arching her back and stiffening her legs, crossing them at the ankles. She was clammy to the touch and pale and very damp with sweat. I was actually expecting to hear that she became hypoglycemic at some point, but she didn’t. Her activity level improved as her blood glucose levels came back down to near normal ranges within a couple of hours.

At the time of these levels, she was receiving 825 cc of Neocate One per day, divided into five feedings given at four hour intervals. One feeding was 165 cc of Neocate One mixed to package instructions of 30 Kilocalories per ounce. Each feeding was given via a Zevex pump over 45 minutes.

Her pediatrician theorized that she was just having trouble maintaining steady blood glucose levels and that she wasn’t diabetic, since she was normalizing her levels on her own in between feedings. I asked if the Neocate might be part of the problem, and if a formula with more complex proteins and fiber might help. He agreed and a dietician at a feeding clinic where my daughter is seen switched her to Kindercal with fiber. That seemed to work for a few weeks, then the problem resurfaced. We were referred back to her Pediatric Gastroenterology specialist.

The specialist thought that she had a form of Dumping Syndrome that is unrelated to the rate of a feeding and more closely linked with a sensitivity to the glucose content of commercial formulas. She felt that our daughter’s problem would likely be resolved by switching to a formula called Compleat Pediatric a commercial tube feeding formula that is comprised of more complex carbohydrates and proteins. It worked for two weeks, then the symptoms resurfaced. Next, she recommended that we cut the Compleat with water and make up for the caloric loss by adding a microlipid solution in the hopes that the increased lipid content would slow her glucose absorption rate. She also had us boost the fiber content of the Compleat with Benefiber. This also worked, for two weeks.

She had no more recommendations when the problem resurfaced again, other than to schedule her for an upper GI to make sure that there were no structural problems with her Nissen and to slow her feedings to a continuous rate. The continuous feeds worsened the problem as they had before, and I did the only thing I knew to do. I started preparing homemade blenderized tube feeding formula for my child based on a normal toddler diet. I asked the dietician at the feeding clinic to review the diet for deficiencies and she said it was quite good and recommended a few minor changes.

The formula is a four-day rotation with different ingredients each day. It includes a whole grain, a meat source, a vegetable and fruit source, a nut butter, flaxseed oil plus an additional oil, pasteurized vitamin A and D fortified whole milk, nonfat dry milk powder, water, and a pediatric multivitamin. I can send you the specifics on my preparation of her formula if you need it.

She currently receives five 250cc feedings at four hour intervals of this homemade blenderized tube feeding, each over 45 minutes, for a total of caloric intake of 900 calories per day. This was working very well. We had no problems for over a month and thought the problem had resolved. It resurfaced this week.

She weighs 25 pounds 4.7 ounces as of two weeks ago at the age of two years, three months. We have been having her weight checked at two week intervals while on the homemade formula until it can be established that she is following a normal growth curve.

When we started the homemade tube feedings, we purchased a blood glucose monitor and have been testing her levels once a day at the end of a feeding. They have ranged from the low 90s to the mid 120s mg/dl [5.0 to 6.9 mmol/L] and she has seemed quite healthy. Her fasting blood glucose has been in the 70 to 80 mg/dl [3.9 to 4.4 mmol/L] range. Suddenly, we’re getting post feeding levels in the 250s to 300s mg/dl [13.9 to 16.9 mmol/L]. Her upper GI was normal with no structural abnormalities and, now, the only response we are getting from her practitioners is head scratching and shoulder shrugs. It seems like no matter what we do, the problem shows up every two (or now every five) weeks and then resolves in two to four days. I think that because it resolves, her problem isn’t being taken as seriously as it should be.

Is this possibly some odd form of diabetes? I am out of ideas of where to turn next. It’s cyclical nature almost makes me think she is building up a toxicity of some sort. Typically, the retching and gagging are so severe that we end up placing her on Pedialyte for 24 to 48 hours and that is often when the problem resolves, allowing us to resume normal feedings. Would a pediatric endocrinologist or allergist be appropriate?