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Monday, July 25, 2016
I have a 7.5 month old boy Dx with CF at about 2wks old via newborn screening. Genotype showed double delta F508. He has been doing VERY well with weight gain with the help of two Ultrase capsules with each meal. He has been hovering in the 65th-70th percentile for weight and 75th for height but at his last appt, he came in just under the 50th, weighing in at 17.2 lbs at 6 months old. Being the overprotective mommy and being concerned about preventative solutions, I have been consistent with giving him higher calorie formula (through adding extra powder to each bottle) and fortifying baby foods and cereals with a scoop of formula powder. I currently make a 6 ounce bottle with 5 scoops of Isomil Advanced- which is 2 extra scoops. I try to get him to about 1000 cals per day.
Here`s my questions after all that history... I am concerned about his drop in percentile. He has been consistently 65-70 since birth and now has dropped just below 50. No one seems to be concerned but me. He maintains 99-100% pulse-ox and negative cultures so his lungs are great, but I want to maintain that healthy weight. Now that he is a month older, I put him on the scale and he has only gained .5 lbs since his last appt 6 weeks ago. Charting that on a growth chart website (7.5 months at just under 18 lbs), drops him down into the 30`s. I don`t know how else to supplement. The formula is getting difficult to mix because of the amount of powder in it- I wind up with chunks of powder that don`t dissolve. Do you know of a higher calorie formula or another way to boost calories or fat in his diet? We can`t afford to pay $35/can for formula right now... among all the other medical bills. I tried asking the CF clinic but they didn`t seem concerned that his percentile dropped. I don`t want to come back with him in the 25th... I want to fix this and adjust his diet before it gets too bad. I`m leery of just trying Carnation Instant Breakfast or Ensure since he`s not one year old yet. I`m not sure what the other options are.
Help a concerned mommy... please?
Thanks so much for your time and expertise.
I will preface my response with the proviso that I cannot and would not recommend medical care for your son. Your questions, which I will add to, are most appropriate for your CF care team, especially your CF dietician. Here are a few things to consider.
1) You do not specify any volumes of feeds, which are certainly important.
2) The formula mix you describe (33kcal/oz) is more concentrated than we would use, and is so high in protein/solute load that the infant kidneys can be overwhelmed, especially since you are also adding formula powder to his baby food. This may also negatively affect appetite and intake. That should be immediately checked with your team.
3) The enzyme dose you indicated is on the low end, 1100 units of lipase per kg per meal/feed. This is another thing that might be manipulated to be sure malabsorption is fully controlled. Talk this over with your CF team.
4) In addition, you might want to discuss acid suppression, which can help enzymes work better with your team.
5) We sometimes ask parents to add butter to baby foods at this age to increase the calorie counts.
6) Sometimes slowing of weight performance can also be an early sign of a change in the lungs, even before there are overt clinical changes like cough or wheeze.
Karen S McCoy, MD
Professor of Pediatrics
Professor at the School of Allied Medical Professionals
College of Medicine
The Ohio State University