My son has stopped taking swallowed Flovent and is back to food trials. He is currently trialing beef, which he has to have every day for 3 months before having another endoscopy with biopsies to determine if it is safe for him to eat, or if he has eosinophilic infiltration in his esophagus. So far, he doesn't have any definitive symptoms that would indicate he is reacting, so I'm crossing my fingers. He still has 2 more months to go before his scope.
The problem we've been experiencing is with his weight. He lost a lot of weight when he stopped getting his enteral formula (an elemental liquid medical food that goes though his feeding tube) but his intake has improved and he is growing. He looks VERY skinny now, and his pants will literally fall off without drawstrings or belts to hold them up, but his current growth spurt may be playing a part. It's difficult not to be concerned when I see how skinny he has become, but I have to try not to overreact. I'm trying to keep tabs on it to make sure he isn't dropping any more weight.
We would love to have him discontinue his
enteral formula and get rid of his feeding tube, but thus far we haven't been able to get enough nutrients in him to do so. He still supplements what he is eating with formula and if he isn't feeling well, that's all he will take. So, I have been trying to figure out how to get enough nutrients and calories into him with the safe foods that he has. His nutritionist recommended making shakes/smoothies with a safe protein powder (understanding that he can't have soy, dairy, wheat, etc.). I have found a very good
brown rice protein powder which can be used to make protein packed shakes. He can have rice milk, coconut yogurt, berries, peaches, pineapple, pears, grapes, etc. However, he can't have bananas. He failed (reacted to) a combination of bananas and oats and will need to retrial bananas by themselves in the near future to determine if they are safe or not. I suspect it was the oats, but there is no way to be sure without trialing them separately. He also can't have melons or citrus fruits, which he definitely failed (they caused an eosinophilic reaction in his esophagus).
Since he does not like most vegetables, I would really like to put them into a smoothie. However, my blender can't properly handle raw vegetables. It doesn't make them smooth (it leaves chunks) so it isn't sufficient and you really can't make a good smoothie with cooked fruits and vegetables. I'm trying to find a blender that CAN handle raw fruits and vegetables, so that I can make him smoothies that will provide him with the natural nutrients that he is otherwise lacking.
I am trying to find out if there are any potential medically-related tax deductions or if medical flex spending accounts can be used for the better blenders (with proper documentation and letters of medical need or Rxs from physicians). There is one in particular, the
Vitamix Blender, that I think would be perfect. I have seen them demonstrated locally and I could make so many things that he could eat or drink, which would greatly benefit him. If is not tax deductible or eligible for flex spending reimbursement, I won't be able to afford it.
If I do find that it's possible to purchase one, I will gladly post recipes (and videos if I can figure out how) that are free of the most common allergens, as well as others that are common triggers for Eosinophilic Esophagitis. I truly feel that it would be beneficial to many parents of kids with Eosinophilic Gastrointestinal Disorders as well as adults with EoE / EGID. It may greatly reduce the stress of trying to provide proper nutrition on a severely limited diet.
In the meantime, I will continue to struggle with getting enough nutrients and calories into my teenager who desperately needs them.
