Morgan Update: 4 April 2020
Morgan has recently been diagnosed with failure to thrive again. Although she has grown in height and head circumference, she has dropped a percentile on the weight chart.
Morgan’s medical team is at a bit of a loss, with no clear indication as to why Morgan is such a severe case of FPIES. At this point, we just need to keep her nourished whilst we wait for her to outgrow FPIES.
I guess the challenge is how do we keep Morgan nourished on an extremely limited diet. The older Morgan gets the less effective the Neocate LCP is, as it is designed for babies under the age of 1.
So the new plan is to add additional supplements to Morgan’s Neocate to bulk up her feeds and make the nutritional content more appropriate for her age. We need to incorporate the 3 macronutrients: protein, carbohydrate, and fat. The plan is to use the three individual products from Nutricia (the same company that manufactures Neocate LCP). Fantomalt (Carbohydrate), Essential Amino Acid Mix (Protein) and Liquigen (Fat).
These increase Morgan’s monthly costs significantly as the medical aid views these as supplements.
Morgan’s doctor prescribed her some medicine in an attempt to see if her symptoms would improve. Unfortunately one of the side effects is a loss of appetite which Morgan could ill afford. Morgan did stop eating her safe foods and eventually became sick with flu symptoms further adding to her loss of appetite.
We have increased her feeds with additional 3 macronutrients, and are pleased to see that she is slowly on the mend.
We have also recently launched a Youtube Channel to Morgan’s Journey. Please subscribe to our channel, so you are kept up to date. We are hoping to get enough traffic and views on our videos, that eventually they could supplement Morgan’s income to cover her supplements.
Morgan Update: 5 October 2019
It’s been a year since Morgan was first diagnosed with FPIES. WOW, what a journey it has been.
Morgan is still only able to eat lamb, avo and banana, those are her safe foods. Her primary source of nutrition comes from Neocate LCP and her essential amino acid mix.
Morgan now has an extensive medical team, made of gastroenterologist, pulmonologist, allergist, immunologist, dietitian, feeding team, clinical geneticist, physiotherapist, and more.
Morgan has a MICkey in her tummy, which allows us to tube feed her when necessary, administer medication, and conduct food trials without getting a sensory response.
Morgan has also recently started immunoglobulin replacement therapy. These injections are done on a weekly basis for a year. Our doctors are hoping that through these injections, Morgan’s immune system will strengthen and eventually she will be able to tolerate more foods.