Noah so far has had FPIES reactions with differing severity from every food we have tried including rice, oats, sweet potato, all fruits, sweetcorn, corn flour, peas, broccoli, zucchini and on and on! He may be ok with carrots...he has tried them but he always had them mixed with something. So from having to call an ambulance because he aspirated on his own vomit in his sleep and was unresponsive to having spots like acne all over him. Throwing up 3-4 times a day is not unusual. The Gastro team at the children's have said to not feed him anything for now so he's on just neonate.
With the fuctose most people find the load they can tolerate. I have already tried Noah on lots of different fruits ( before diagnosis) such as apple, banana, mango, water melon, apricot...all with massive throwing up reactions with skin flare up to go with them. He only ate about 10 teaspoons of food a week at that stage and not all of it was fruit. He was having terrible reactions so I can only conclude that his fructose load tolerance level at this stage is very low. Also when he had his hydrogen breath test he testing very high positive reading very quickly. Who knows...in the future...it may change...but the fructose is usually for life.
The main problem is that most children with FPIES who have had the severity of reactions that Noah has has usually can only tolerate fruit. And there...we have a problem.
So the dietitian team at the childrens really seem stumped. I call everyday and keep being told they are not sure yet but someone will get back to me. His last discharge was weeks ago now. The specialist teams don't remember when or if they had a child before with this severity of FPIES and the fructose...so I guess we will all have to work it out together. Right then...back to the research.
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