Kallista is 14 months old now and is unable to eat anything besides breastmilk. We have seen every doctor we can in Arizona. We have been fighting the insurance for 5 months to find us a specialist or multiple specialists out of state to see Kallista.
However, our family is considered to be living in poverty and because she is disabled she only has state disability insurance. The insurance refuses to pay for any expensive treatements or even to allow us to go out of state for further medical opinions.
Allyssa our older daughter died 6 years ago from the same symptoms Kallista is having. We have no idea how long God will allow Kallista to be on earth. We need help to be able to go see doctors. We need awareness of how awful state insurance can be and how we are being treated.
Posted by Lora Cash
Posted by Lora Cash
Have any of your doctors mentioned FPIES? Food protein induced enterocolitis syndrome. It sounds like you might be dealing with that. My two year old son has it. There are two doctors in Arizona that deal with FPIES. Dr. Neal Jain in Gilbert and Dr. Cindy Bauer in Phoenix.
Hello - I was just going to donate my milk to the milk bank near Phx Children's Hospital. I've gone through the requirements to be an official donor. Let me know. My son has been in the NICU for 6 months and isn't consuming nearly as much as I'm making. Feel free to message me and I can drop off for you. We're thinking of you and praying for your sweet girl ♥
Can you get ahold of me via FB? I'm going to be in the Tucson area next week and I may be able to pump to donate to you! I'm on a low dairy diet!
I may be able to help. I have 2 children, one diagnosed with FPIES and the other only 3 weeks old. We're not sure if the baby has FPIES yet or not so I'm watching my diet and dairy intake while nursing. I'm also only about 20 minutes from Casa Grande. Please pm me via Facebook if I can help.
There is nothing mom can do from what I understand There will not be less lactose in the breastmilk if the mother stops eating dairy products. Its processing that removes the dairy. I could be wrong I am not in the milk business, but if the answer was so simple as to get the milk from another mom I am sure this wouldn't be an issue.
I've had a vegan diet for the last 10 months. Currently nursing 7 month old. Have a little extra frozen milk I can donate. Message me on FB.
I breast feed my son and am willing to go no or low dairy to help out your beautiful baby girl. I already donate milk and am familiar with the process. My son is 9 months so the milk should be OK as it is relatively age appropriate. Please message me specifics. God bless your baby and family.
Have you tried raw goat milk (with added folic acid and liquid multi vitamins)? My son had to be supplemented and could not tolerate any formulas...tried them all. A friend sent me to a dairy farm, I mixed the essential nutrients in and diluted 1:1 with pure water to start and lowered dilution as time went on. He thrived from that point, no vomiting, no diarrhea. My pediatrician didn't like it but goat milk is the most drunk milk outside of the U.S. It's consistency is very similar to breast milk. I was told the canned was not good due to killing of important nutrients during the pasteurization process. Good luck with your little sweetie!