This post comes from my colleague Sharon, one of the dieticians on our feeding team, in reference to Martina’s comment and question on how best to recommend a special formula and how to convince parents to try something new that is more expensive.-Krisi
What I would add to Krisi’s response is that there are now so many different ‘hydrolyzed formulas” on the market that it can be very confusing for parents (and caregivers!) to know which option is best to treat the infant or child’s GI issues.
There are varying levels of a hydrolysate protein. In a nutshell, a hydrolysate protein has been broken down from its original form into an easier to digest form. A partial hydrolysate (such as Enfamil Gentlease, Nutramigen, Similac Total Comfort, many of the Carnation infant formulas) is less broken down than some of the more extensively hydrolyzed ones (Alimentum, Pregestimil). The protein in extensively hydrolyzed formulas is further broken down and made up of both peptides (short protein chains) and free amino acids. Free amino acids are the building blocks of protein. The amino acid formulas are made in a lab and are free of any trace of cows milk protein (Neocate, Elecare, Nutramigen AA).
Both partially and extensively hydrolyzed protein formulas are based on casein or whey, which are proteins found in milk. Extensively hydrolyzed formulas are considered hypoallergenic and most children with milk allergies can tolerate the smaller protein chains found in these formulas. However, some children with severe milk allergies still may not be able to tolerate these formulas since they are based on milk proteins and have some intact proteins, which can trigger an allergic response. In this case, they would need an amino acid based formula. Unless a child presents with overt symptoms of milk allergy (blood in stool, severe nausea and vomiting with formula or milk ingestion, severe eczema) , we often try something partially hydrolyzed first (in the case of GI discomfort,reflux, severe constipation) and evaluate efficacy prior to making a further change. At UNC, we tend to see a large percentage of infants and children with more severe GI and feeding issues, so our use of more extensively hydrolyzed and amino acid formulas is fairly high.
The positive outcome we see when trialing these formulas is that one can often see a result in a short time frame. Most parents of infants who had severe symptoms and were initiated on amino acid formulas report the symptoms were gone or markedly improved within 1-2 weeks, and they were much happier and thriving. However, we do have cases where parents will say they did not see enough of a difference to make the total formula switch and we look at other formula adjustments and medical options to treat the infant or child.
There are many aspects you need to consider when recommending these products. It is really essential to work side by side with a pediatric dietitian when recommending a hydrolysate or amino acid formula, as he or she will be able to evaluate nutritional needs, how much formula is needed to meet these goals, how to obtain the formula and reinforce the recommendations from the feeding therapist and where to go as an appropriate next step. It is also important to note that some of these specialized formulas (especially the amino acid based ones) use non-standard mixing procedures, and I have observed cases of severe failure to thrive when proper mixing technique has not been reviewed in detail.
We often have samples in our clinic to try the formula for a few days prior to making the formal switch and parents are usually more willing to try a formula change if they know they have not committed financially to something that may not work. Parents are often leery, and by the time they have come to see you for guidance, have already had multiple formula changes and are frustrated by yet another recommendation to try a new formula. The taste and smell of hydrolysate and amino acid formulas also have a bad reputation (often rite fully so!) and parents feel uncomfortable giving their child something that is not pleasing to them.
As an RD, I approach these obstacles using two strategies. It is important they know the benefits of trying the new formula and why you feel strongly from a nutritional perspective that this would be a good next step. Many parents are more open to try a formula change prior to new medicines or further medical testing for issues. It is important to reinforce that yes, the taste is different, but many babies (and some older children) accept it after the surprise of something new in their bottle has passed. We often counteract this roadblock by introducing the formula slowly (i.e mixing the new formula and their current one 1:1 and slowly increasing the percentage of the new one over a couple of days). This has been successful with better long-term acceptance.
The other big obstacle is cost. There is no doubt that, as hydrolysate formulas become more elemental, they become more expensive. This is another reason as to why the decision to use these should not be made lightly. For example, a can of infant formula makes about 85 ounces (about 3 days worth for most older babies). A can of a partial hydrolysate is about 15.00, a can of a more extensively broken down formula is 22-25 dollars and an amino acid formula runs about 35.00. This, over a month, is substantial and we as a team must evaluate what the family can realistically afford. Luckily, most of these are covered under the WIC program and in North Carolina most specialized formulas are covered under Medicaid if there is medical necessity (which, if they need them there is). Private insurance companies do not cover as well (some not at all even if fed via G tube), and this can be challenging. Many formula companies have “Helping Hands” programs that can offer financial assistance with coverage. There are sites on-line (www.oley.org) that offer a “trading post” of formulas families are no longer using that can be purchased much less than what they would need to pay out of pocket otherwise. We have assisted with letters of medical necessity and in some cases this has helped with coverage.
One other consideration we look at if the child is older (greater than a year), and providing their growth has not been affected by their GI and feeding issues,is using a milk free substitute (such as Almond or Coconut milk) and improve the nutritional quality some by adding 1-2 scoops of the amino acid or hydrolysate formula per 8 ounces to make it equivalent to about a 20 calorie/ounce formula. This has worked well in many cases and has extended how long a can of formula will last, leading to less financial strain, but has improved GI symptoms and diet tolerance for the child.
Sharon Wallace, RD, CSP, LDN
Pediatric Specialty Clinic Dietitian
UNC Children’s Hospital, Chapel Hill, NC