Location: Kentucky, United States
Challenges:Choking, vomiting, constant clearing of throat even with formula.
Formal PFD Diagnosis: Yes
Age of Formal PFD Diagnosis: 1
Type of Insurance: Medicaid now.
Percent of monthly budget that goes to feeding difficulties: 70%
Does insurance cover any / all medical costs? Up until last year no. We are in debt with medical bills of over $10,000.
From the time Cruz was born at 40 weeks and 1 day, I had a gut feeling something was wrong. He would constantly scream, vomit and choke every time he fed. Breast feeding wasn’t an option as hard as I tried with him, due to the severe choking and reflux every time he latched. At a week old Cruz stopped having a stool for 3 1/2 days and I was told it was normal. After the 3 1/2 days Cruz produced a mucus stool that got sent off and tested. We were advised to change his formula from Similac Sensitive to Nutramigen. He was on that formula for another week whenever he passed a bloody stool and switched to a formula called PurAmino. Cruz at less than a month old would not finish 2 ounces without choking, stopping for several hours or gagging. This continued and at 3 months old (after several ER and doctor visits) got a referral to a gastroenterologist. He looked at Cruz, listened to what I had to say and told me he had severe reflux and was colic, sent us home with a stronger medicine for the reflux and that was it. Cruz continued to have problems with choking and at around 6 months old when it was time to introduce pureed foods, he would get so choked up, we had to intervene several times. At his 9 month checkup, I expressed my concerns and that his main source of nutrition was still formula because he couldn’t swallow the pureed foods. I was again told he was still young and learning and to keep trying. On his first birthday, we made a sweet potato baked and pureed it for him and once again he choked and we had to intervene. The next day he did the same thing with applesauce. At his one year check up, we finally got a referral to a feeding therapist. It wasn’t until his feeding therapist recognized that he had a tongue tie at the age of 13 months old that it was corrected and believed that may have been the problem. After the healing of his tongue, he still continued to struggle with eating and choking. She had mentioned the possibility of a disease called Eosinophilic Esophagitis (EoE) and had us referred to a gastroenterologist. At 17 months old Cruz was diagnosed officially with EoE. Along with his severe food allergies of milk, milk byproducts, eggs and pea/pea protein, cannot have the rest of the top 9 allergens due to EoE. Cruz is now three years old and has severe food aversions, making meals and nutrients difficult to intake. He supplements now with a formula specialized for toddlers called Neocate Jr.
My mama heart aches every time he clears his throat after he eats or randomly gets sick after eating safe foods. My husband and I don’t get to go out and have just anyone watch our children, because the safety and priority of Cruz always comes first. Having a child with PFD is a heartache no one (not even family) understands unless you too have a child with PFD. The constant worry, the silently crying and wracking your brain for hours on end to find ways to help your child overcome simplistic obstacles, that normal children his age it just comes naturally, is a small glimpse of what PFD for a parent looks like. Going grocery shopping, birthday parties, Christmas get togethers are no longer enjoyable, because it’s a constant worry of if your child is going to be okay, finding and preparing safe foods for him and then watching to make sure he doesn’t grab another child or adults unsafe food. Finally finding a safe food your child can tolerate and then the company changing the recipe or discontinuing it is like a punch to the gut. My Cruz has several delays and doesn’t comprehend or quite yet understand he can’t have other things that his friends do.
With all of this, I still have hope. I have hope that one day there will be a cure for EoE, that my son will overcome his severe food aversions and dysphasia. I can only pray for all the parents and children who suffer from PFD and thank God for putting Holly, our feeding therapist, in our life.
What having coverage could mean
Having coverage would mean that all of the safe foods Cruz can have would help tremendously in us trying to get out of medical debt. It means that we wouldn’t have to worry about losing Medicaid for him due to my husband being self employed. Cruz still continues to go to feeding therapy weekly, sees his gastroenterologist every 6 months, along with having repeated upper scopes and following along with a dietician.