Our Family

Gastroparesis and Billy's GI story

Billy's Spine Page
Billy's fusion surgery
Billy's Leg and Foot Page
Life with a fixator
Make a fixator cover
Gastroparesis and Billy's GI story
What is CRS/SA - Caudal Regression Syndrome/Sacral Agenesis?
Littlest Heroes Project photos
Make A Wish trip pictures
2011 VACTERLS conference
2009 VACTERLS Conference
2007 VACTERLS conference
CRS gathering January 09
Old updates
Contact Me

From day one, Billy was "a spitter." I can't count the number of times he "christened" my husband and myself during a feeding. I nursed him for the first three and a half months of his life, and found that only feeding on one side at a feeding helped the spitting a bit, along with frequent burping, and raising the head of his crib. After I weaned him to a bottle, it was somewhat easier, since I could feed him in an upright sitting position. By the time he was about five months old, things were under control, but both the pediatrician and myself suspected he probably had reflux.

The real fun started once he went from stage one to stage two babyfood. He started having episodes of vomiting the solid foods back up toward the end of a feeding, after gagging and choking. It got so bad that he started refusing to eat, knowing what was going to happen. At ten months old, a gastric emptying test confirmed that he was refluxing back into his esophagus, but at a 42% emptying they weren't concerned about slow motility (normal is 50%). He started taking Zantac three times a day, which stopped the gagging and vomiting after about 2 weeks.

At eleven months old, a modified barium swallow test showed that he had a mild swallowing dysphagia, with a delayed swallowing trigger (food sits for a second at the back of his throat before being swallowed, making it easier to gag on, instead of going down in one motion) and that he aspirates thin liquids like water up into his nasal cavity. Time, and practice, have improved the swallowing, or maybe he has just learned to deal with it. He still sputters when he drinks water too fast, but has adjusted to that also.

The first year of his life, he gained weight well, despite only drinking between 14-20 ounces of formula a day, even when that was his sole source of nutrition. The docs were never worried because he gained weight, despite my concerns with his eating. However, between twelve and fifteen months of age, he lost almost two pounds, probably as he started walking and getting more active. That got their notice and at this time we started supplementing his diet with 2-3 cans of Pediasure, and it has been a roller coaster of ups and downs, weight gain and weight loss, good eating periods and ten day solid food strikes. His GI prescribed an appetite stimulator - Periactin, which did a good job of making him eat normally, while continuing to drink 2 cans of Pediasure a day. Unfortunately, after the effect wore off after about six weeks, he went right back to his old eating habits of picking a bite or two of something, if he didn't actually refuse to eat at all, before pushing it away, saying "I don't want it" or "all done."

His reflux is under control, and the GI feels his eating issue are behavioral in nature, and has referred us to a feeding disorders clinic for evaluation. After listening to family say he would eat if it wasn't for the Pediasure filling him up, I tried cutting it out, offering water or whole milk instead, and got him to eat normally for about two weeks. After dinner, I offered him one can of Pediasure for dessert, so it wouldn't interfere with his appetite during the day. Unfortunately, despite the good eating, he lost a pound. A couple of months later, we are still dealing with the ups and downs, still adding supplemental calories to his diet, and waiting to see if the feeding clinic offers any answers.

This has been one of the hardest issues for me to deal with. I used to feel like a failure because I couldn't get my child to eat normally and maintain his weight from checkup to checkup. I've gotten used to it over the past year, but at times, especially when he goes from a good eating phase to a bad one, the feelings come back. Talking to other VACTERLS families, and hearing that they often have the same problem has helped a lot, helping me to adjust to the fact that this may be "normal" for Billy. Through it all, though, he has remained a happy and healthy child. He doesn't even look that skinny, since he is proportionate in height and weight, just small for his age.

18 months old update - We had the visit at the feeding clinic. They thought that he might have undertreated reflux still, and suggested we switch medications from Zantac to Prilosec. At first, this really helped Billy's eating. He ate something at almost every meal, although it is still far less than most children his age, and he still requires nutritional supplement drinks each day to maintain his weight. However, after several weeks, he went back to a barely eating cycle. I guess he's just going to be an up and down cyclic eater. On a good note, he did manage to not only maintain his weight, but actually gain some!

So ... back to the cycle, sometimes eating, sometimes not, or just picking/grazing all day, with three nutritional drinks a day. Weight up and down depending on season and illnesses ... he tends to gain better in summer/fall, then lose some in winter during sick season...

Almost 3 years old update - A footnote to add that my instincts were correct all along. Billy doesn't shun food because of any aversions or psychological reasons. He was diagnosed with severe gastric emptying delay (DGE), meaning the food empties from his stomach much slower than the normal person, making him feel full all the time. We experimented with a couple medicines (Erythromycin and Periactin) which had a short term positive effect, but no long term benefits. We are considering starting a new drug, Propulsid (which is tightly controlled by the FDA) which is one of the few motility medicines available which are helpful to DGE. However, after reviewing the information packet about the drug and it's possible cardiac effects which can be fatal, we decided that it wasn't in Billy's best interests. He is healthy, in no danger of aspiration pneumonias from his reflux, and trying to force "normal" eating would only be for other people's benefit rather than his. The risks aren't worth the benefits while he is healthy.

Also, Billy ended up having his tonsils and adenoids removed this summer, and while his eating didn't seem to improve, his weight gain did in a big way. He must have been burning extra calories struggling to breathe around the obstructed nasal passages at night. (written 6/9/02)

Six year old update-From three to five, Billy maintained a decent weight gain, slowly but steadily without any major weight losses. He eats whatever solid foods he wants at each meal (we don't force him) and drinks three Carnation Instant Breakfast "milkshakes" made with whole milk and skim milk powder added for extra calories without extra fat (which can slow down digestion, something you don't want to do with a gastric emptying delay). However, the summer after he turned five, he lost a couple pounds again, and was looking very skinny (it must have come with a height spurt also, since he's rarely looked overly thin for his built, just normally thin). The GI started him back on Periactin to try and jumpstart his appetite. This has worked pretty well, getting him to eat a bit at each meal at the least, and put a couple pounds on and maintaining his weight. We've still found every once in a while the effects wear off, so then we take him off the med for a week or two to clear it from his system, then start him back up. Fast forward to six years old, the med is still working with this cycling method.

Another thing that has really helped his appetite was having his spinal fusion surgery the summer he turned six. Straightening his body out seems to have given him more room to eat, or at least putting less pressure on his stomach, or something. He is eating a much greater quantity of foods, and we have been able to drop him back to only two "milkshakes" a day and still maintain his weight and some growth, and haven't had to hound him quite as much to eat. You can't see it through much of this account of his GI issues, but a large amount of time and energy goes into constantly reminding (hounding) Billy to eat, to drink his milkshakes, etc., to maintain his weight and keep him healthy and away from a Gtube. If he were more stubborn in this area, or less afraid of getting the gtube, he probably would have had one a long time ago... (updated 2/15/07)

Nine year old update- Billy continued to do okay with his eating, but at about seven he decided he had had it with the "milkshakes"... I tried all kind of alternatives to get the extra calories in him (yogurt drinks, yogurts, ice cream shakes, fruit juice type liquid supplements) with no success. However, even without those 2 shakes he managed to maintain his weight. At about 8.5, after a bad virus that laid Billy low for a week and lost him five pounds, he suddenly started eating like a fiend. He gained back the weight, and continued to eat so much more than he ever had for about ten months. The only weird thing is he didn't gain any extra weight from all that eating, sheesh... It's like his body is programmed to stay the same anymore, only gaining little by little, ounce by ounce, despite the food intake increase... His eating has tapered off a bit the past month or two, but I believe his weight is still stable, although he did grow taller and looks very skinny for his age. With his eating so improved, I had dropped back on the Periactin to once a day when it wasn't allergy season, and none at all during allergy season, since he desperately needs the Zyrtec for his allergies and I can't give him two decongestants, but now I'm starting it back up to twice a day like he used to take it to see if it will help more.

Twelve year old update- Billy has continued to eat very well :) We switched up allergy medications so that he can still take the periactin daily even during allergy season. He still loses all appetite whenever he gets ill with anything, and can lose 3-5lbs, but he gains it back and has managed to slowly increase his weight without any supplements. However, despite the steady gain in weight, his percentile on the growth charts has gone down from 15% in weight to 3%, and height went from 25% to 3% also, since he should be having large growth leaps by now. We do have to take into consideration that he had an 8 level spinal fusion at age 6, which is having a large effect on his spine growth and his overall height, and he had two major surgeries this past year which have diverted a lot of calories to healing. Hopefully now that we are done surgery for the foreseeable future, he can let his body start growing. At least his height and weight are proportionate, and he is healthy for the most part, if skinny looking.

Sixteen year old update - Billy continues to do well with a very small dose of periactin/cyproheptadine. When it is working, he eats very well and you'd barely know there was a time he'd happily starve, especially if it is something he loves. If it stops, his appetite plummets and then we stop the med and restart it again in a couple days after it has flushed out of his system. He's been maintaining a steady weight of about 110lbs, so we've let him manage his hunger and eating. Some days he is hungrier than others and other days he isn't, but I don't want to push food on him just "for the sake of eating" because of his previous issues. He knows his body at this point, and needs to maintain a healthy balance of eating when he's hungry and his physical limitations and hobby preferences combine so that he isn't very physically active so he doesn't need too many calories. His body isn't built to carry extra weight with his spine and leg issues, and at just under 5'4" he is healthy.

Enter supporting content here