Our story

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From the birth of my son, who now has 11 months, we are afraid of the unknown and the fight to help him. He was born with a swollen left side of the body. Umbilical cord was wrapped around the left crotch. We were told that the island would retreat in time, but I could not let it go. We also went to the orthopedist, physiatrist, neurologist. They confirmed that it was Hemipertrophy. The path to the new diagnosis is worse! Everything started since October with Rota virus (diarrhea and vomiting) we were in the hospital for 3-4 days, received an infusion due to dehydration. I still nursed him. We came home the diarrhea and vomiting was reduced after a few days. After almost two weeks again, high temperature diarrhea and vomiting. We went to the hospital and after 2 days and since the veins burst the infusion, it pours into the tissue and the left side swells like the right eyelid. We were rushed to a bigger hospital where diagnosed severe dehydration loss of albumin, potassium, calcium ... immediately got through the infusion to compensate and the doctor of gastroenterology took us to his department. They banned me from breastfeeding, gave him Monogen Milk plus an addition to the Phantom.A small intestine biopsy was performed, they took blood for nutritional allergens. When the doctor saw the camera with a small intestine, he immediately told me to stop the milk because I would not be able to breastfeed him again. That my milk is poison to him! I felt disheartened. I felt like I had failed as a mother. Intestinal lymphangiectasia, a diagnosis I hear first time and many questions to ask! Just special diet and especially milk that is not available anywhere. We are waiting for the results of genetics, but with us in the country everything is slow and results from November,we are stll waiting. He is losing protein again,transaminases remain high.He has a meat problem, he does not like it anyhow, no matter how i make it he refuses to eat. But I can feed it somehow with the addition of 0% fat yogurt ... I apologize for the long story but I think it's important to say how difficult it is to establish a rare condition at least here where I live!
Thank you!