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My daughter was diagnosed with FPIES at 6 months. She is now 8 months and has not passed anything!!! I am so confused and lost on what to do to help her. She will be 1 in 4 months and I still have nothing I can actually give her and im starting to freak out because she is starting to show signs of food aversion. Anyone come across this. What did you do to avoid this? Any suggestions for a baby that has not passed anything?

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Have you taken a gut rest for a bit? I found that if you wait a week or two before feeding any new solids after a failed trial that it was helpful.

if you don’t get the answers that you need here, there is a Facebook group that is very helpful and seems to have a larger community if you can join.  Just search fpies and it should come up first.

Both my fpies kids had no passes until 18 months except my breastmilk with me on a limited diet. Make sure you are at baseline for two full weeks before you start a new trial or everything will fail because of so much inflammation. Are you at baseline with breastmilk or formula? If not work on that first. If the child is chronically reacting at a low level everything will be a fail!

Hi. We went through the same with my daughter. Its really hard!! I bought non food items for my daughter to put in her mouth - a baby silicone toothbrush, regular toothbrush, vibrating teether toy, and we made her ice pops using ices molds. We used to give them to her while we ate, so she would still get the oral stimulation in a safe way, and not try to grab our food. If you're having a hard time passing any food, I would for sure give a break to let her heal, and as she gets older she'll hopefully start to outgrow it. Our GI gave us a low FPIES list of foods to try first, and then we worked with a nutritionist to choose foods. Our first safe foods were zucchini and then butternut squash. We made our own "baby food"/soup by just boiling pieces in a little water and blending them with a little salt. Good Luck on this journey!! In terms of food aversions, my daughter started working with a feeding therapist when she was a little over 2 years old and was finally tolerating different types of foods. Occupational therapists (OT) and speech therapists can both be feeding therapists. Our allergist recommended OT to help with the food aversions. Now we are trying to get additional feeding therapy with a speech therapist to help her with chewing, as it is still a new skill for her.

We froze breastmilk for meals and gave our kids shaved Ice as well. This was great for the older but the younger didn’t like it cold shaved ice was ok but not BrM. We did lots of safe non food chewy things but both needed years of SLP with a motor therapist. It did not effect their speech. Also they learned to drink from an open cup by one year and never did sippy cups. The muscles used for open cups are more the same as those used for speech.

> On Feb 1, 2021, at 11:24 PM, The FPIES Foundation <alerts@crowdstack.com> wrote:
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