Growth Charts

I had an appointment at the Immunologist yesterday. We are certain now that Jack is FPIES to Rice and intolerant (or chronically allergic) to oats, soy, wheat, rye, nuts, milk formula, citric acid (in strawberries, pineapple, orange, mandarin, lemon, lime etc). I am suspicious of peas, pear, beef and corn and the immunologist has asked me to try and feed them to him again. 

On the positive side Jack could eat, carrot, lamb, potato, cucumber, chicken, and sweet potato if he wanted to. Unfortunately he is not willingly eating anything. We tested these foods by almost force feeding him. It was awful. He is happy to have them as finger food where he chews at them and spits them out like cookie monster. He will not swallow them. We are grateful he is exploring them though learning about tastes and textures, aromas and temperature.

The immunologist called in a dietician to our appointment and together they discussed his poor growth and explained to me that he is not getting enough nutrition and that it would be  impacting on his development, including his brain.  The photo above is of his weight chart. His length chart looks similar. He is supposed to be on the 50% line. He would weigh 9.4kg. He currently weighs 7.4kg. At 9 months he is still wearing the same clothes that he wore for Christmas.

The Doctors told me he will not be achieving his full potential if his lack of nutrition continues. He is refusing to drink the elemental formulas no matter how I try to disguise them. He sniffs at his drinks and if he can smell them he outright refuses them. The elemental formula's have all the elements your body needs with all the proteins already broken down.

Despite my best efforts, 100% breast feeding is not enough for him any more. They have advised us that Jack needs an urgent nasal gastric tube put in to ensure he achieves sufficient nutrition. They have given me one more week to try again with the elemental formula in a bottle. We have a follow up appointment next week to discuss a hospital admission to insert the tube and teach me how to manage it.

The immunologist agrees with the gastroenterologist that Jack may also have Eosinophilic Esophagitis which would be causing the unwillingness to swallow the food when he has a real desire to eat. Jack is being anesthetised on Monday for them to do an endoscopy to diagnose it. The scope will tell them definitively and they will be able to treat it.

I am emotionally drained and exhausted writing about it. I know these Doctors are right though. We have been battling on for a few months now and made so little progress. Jack needs more help than I can give him at the moment.  Like any mother, if there is something that is inhibiting your child from achieving their full potential in life you will do what you can to overcome it.