Help MorganHer FPIES JOURNEY
Even before Morgan was born, the doctors expressed concern on her growth. Her stomach measurements were weeks behind all her other measurements.
27 DECEMBER 2017
Once Morgan was born her struggle really began. I did what any well-intentioned mother would do and fed her breastmilk. This is when Morgan had her first FPIES reaction. She went grey, sleepy and I repeatedly called the nurses to come to check her.
I was medically advised to stop breastfeeding and try put Morgan on formula. We tried tin after tin after tin.
Morgan was feeding every three hours, and would cry and fuss for two hours after each feed. Our hearts broke for this little baby who was so uncomfortable and we didn’t know how to help her.
We tried every formula on the market, these are a few that spring to mind:
- Nan HA
- Nan Lactose Free
- Goats Milk
Eventually, after multiple visits and phone calls to Morgan’s pediatrician, he recommended starting Morgan on Neocate LCP. This is a very expensive and costly formula.
Morgan started to improve almost immediately and became a model baby. She gained weight, she hardly ever cried. Most importantly she was happy.
Neocate was costing us R5500 per month.
What we now understand from Neocate is that not only is it food, but it is extremely healing for the gut. We believe this is the reason Morgan was able to go so long before her next reaction.
At 6 months we started weaning her onto solids. Everything was going well. We were also struggling financially so after 4 months of Neocate Morgan was weaned onto Nan with advice from our pediatrician.
Morgan first started with chronic snotty nose, which would eventually turn into flu. We started to find our baby was permanently sick, besides this she had severe tummy problems and vomiting.
Her growth slowed, and she started having decreased appetite.
Emergency Admission to Hospital
In September 2018, Morgan was admitted to Morningside Medi Clinic for severe dehydration and infection. Morgan had not eaten food in a week, and with the continuous vomiting, she had become dehydrated.
After two days, we made the decision to put Morgan back onto Neocate. She was at such a severe point, even that was too much, and had to be watered down.
After 5 days in the hospital, we introduced home-cooked apple puree, and after 30 minutes the vomiting started again.
This was the first time it became clear to me that Morgan had a problem with FOOD.
God sent us an angel
Morgan’s condition was stable, however she was not able to tolerate any food. Our doctor seemed confused and unsure of what was troubling Morgan.
A friend from primary school, Lani, reached out, she had read my facebook posts. I had not seen Lani since primary school.
This angel brought with her a packet full of tins of Neocate, and clear advice that my next step should be to make an appointment for Morgan with a specialist at waterfall hospital.
During the consultation with the specialist, she said that Morgan had no muscle mass, her growth was poor and she suspected Morgan had FPIES. She told us not to feed Morgan any food, continue with the Neocate and she would admit her for tests the following week.
Netcare Waterfall Hospital
Morgan underwent a series of tests to rule out a number of things that could be causing her problems.
As all the tests started to come back, the picture became more clear. Morgan has FPIES (Food protein-induced enterocolitis syndrome).
Her gastrointestinal tract was so inflamed the pediatric gastroenterologist believed that Morgan was not absorbing any nutrients.
It was now the beginning of October 2018 and Morgan had lost 2kgs in weight. This might not seem like a lot but it’s almost 30% of her body weight.
Oral Food Challenges
Now that we had the diagnosis the next step was to begin oral food challenges.
This is done in the hospital working closely with specialist and the dietician.
The protocol was to feed Morgan 1/4 tsp of carrots(because carrot is on the low allergy list) at lunch, and 1/2 tsp of carrot at supper.
Morgan was observed for 24 hours to monitor for any FPIES reaction. After 8 hours Morgan vommitted, which meant carrot was a fail.
A Game Plan
We stayed in the hospital for 3 weeks. Working with specialist and her team, we moved through food challenges to find a basic diet to send Morgan home on.
We eventually left the hospital with the following diet:
- Neocate (which was now R8500 per month)
The specialist had arranged with the medical aid to pay Morgan’s Neocate for 6 months, and then her case would be reviewed.
We have reapplied with the medical aid for further cover, it has not yet been approved, with the costs weighing heavily on us.
When Food Trials Go Badly
In November 2018, Morgan did an oral food challenge with Millet (Grain).
This was one of Morgan’s worst reactions. Morgan had to be placed on TPN (Total Parenteral Nutrition). This is a drip that contains all the nutrition Morgan needs. These drips come with their own risk, in that it is administered directly into the main vein.
The drip is stitched into Morgan’s neck so it can’t be easily pulled out. Morgan was transferred from Highcare to ICU. This was extremely traumatic for her and us.
Morgan’s Safe Foods
Morgan continues to be in and out of the hospital. She requires regular occupational therapy, visits to the dietician and checkups with her specialist.
Morgan’s Safe Foods:
- Neocate (Most Importantly as this provides 90% of her nutrition.)
In the picture on the right, Morgan only has lamb on her plate for lunch.
Morgan’s Failed Foods: (Allergic Reactions)
- Pro-Protein(Fish based)
- Cows Milk
- Goats Milk
- Sweet Potato
- Neocate Junior
- White Potato
The Whole Family
Morgan’s diagnosis is difficult for the whole family. I (mommy) never leave Morgan when she is the hospital. If she is there for three weeks, so am I.
This makes it extremely challenging for work and as a result, we have suffered a loss of income and adds a lot of extra pressure on Daddy.
The picture on the right is Dani, Morgan’s older sister, visiting her at the hospital. These two are best friends and miss each other terribly when separated.
Morgan’s grandparents and godparents help out a lot, and a huge thank you must be said to them for all their assistance.
Taking Care of Morgan
Morgan requires fulltime care and nursing.
- She has a number of medications and supplements that need to be administered at regular time intervals.
- All her intake, output, symptoms need to be logged and documented.
- Monitoring Morgan’s vitals to detect early shock symptoms during OFC (Oral Food Challenges).
- Continuous caution needs to be exercised to ensure no cross contamination when handling Morgan’s food.
- Paying extra attention when the children are eating to ensure Morgan doesn’t eat her sister’s food.
- Continually wiping furniture and sweeping floors to ensure no crumbs or food residue is present.
- Taking Morgan to her medical appointments.
- Finding creative ways to make Morgan’s food exciting so she will eat it.
- All the out of hospital medical bills
Light At The End Of The Tunnel
We have good days and bad days. We continually pray for God’s healing and direction as we take this journey with Morgan.
The good news is she will hopefully outgrow FPIES between the ages of 5 and 12 years old.
We are grateful to all our friends and family who have supported Morgan and us through this traumatic and challenging time. Your love, kindness, and generosity has touched our hearts.