Tuesday, February 1, 2011

The Source of All My Stress

Eat something Lyla! Please eat something! I approach every single mealtime with those two sentences replaying over and over in my head. Eat something Lyla! Please just eat something! Lyla's condition is know as Food Protein Induced Entercolitis Syndrome (FPIES for short). FPIES is my waking nightmare. There is no real medical testing that can be done to let me know what exact foods she can't have. It is all trial and ERROR! Her reaction to "bad" foods is exactly the same, every time. Two hours after eating the offender, she will throw up every five minutes for a few hours........even when there is nothing left in her tiny belly. I can only hold her and try to comfort her, even though I can see that she is in so much pain. It is horrible to say the absolute least. I want to expand her diet and find new foods she can tolerate, but every time I put something new in her mouth, I have to wait and hope and pray that she won't react. It is causing so much anxiety. She is lucky enough to have a short list of safe foods, most of which she would only in a pureed baby food form. She still (at nearly two years old) really struggles with new food textures. Sometimes just putting something new on her tongue will produce gagging for no real reason. She is NOT adventurous about trying new things, so it's very difficult to get her to even TRY eating squash that isn't in baby food form, or a green bean that isn't in baby food form. The newest problem I'm trying to deal with, is the fact that she is starting to reject most baby food. What am I supposed to feed her if she won't eat the main thing I KNOW is safe for her? I understand that she is probably completely sick of all the things I've been relying on for the last year, but there is no other choice right now. I will probably be dealing with this for at least another year. I say "probably" because NO ONE KNOWS how long this could go on. There aren't enough people with FPIES for my doctor to even know. I am so thankful for the Internet, without which, I would really not have any idea what was going on with her. I was lucky enough to find a fantastic support group of other moms whose children also have FPIES. If I didn't have their help and advice, I would be so lost. It is also nice to talk to another mother who understands how awful and defeating this can be. It is horrible to watch your baby lose weight. Two weeks ago, Lyla reacted to something and we went through the vomiting cycle. Then the following week she got the flu and that killed her tiny appetite. Dave and I put her in the tub the other night and we were both horrified to see almost a six pack on our baby. She has NO fat and no reserve of it at all. She looks gaunt and I am so hurt because we can't seem to "fix" it. This is what is taking over my life. I just worry about it all the time. Where can I add calories to her diet? I was adding olive oil to her baby food, but now she won't hardly even eat the baby food. Sorry to be so depressing, but this is THE PROBLEM of my life. Everything else is tiny and easy to deal with, except this. I am the mom and I feel completely responsible for Lyla. I wonder "why" all the time. Why does she have this? What did I do wrong? When will it go away? When can I stop worrying about what is going in her mouth? When will it be normal? WHY WHY WHY???? The worst part about FPIES is the general lack of knowledge about it. Her pediatrician hardly knows anything about it. Lucky for us, her allergist knew what this was. It is so rare and "new". Where did it come from? WHY WHY WHY?


  1. So sorry Stef! Hope she grows out of it and soon. I spend most of my days force feeding my skinny Christian but I take for granted that he can eat ANYTHING if he chooses. Good luck and hang in there...xoxo

  2. Oh Stefanie.... I wish I had a single word of wisdom. We are walking on eggshells here - and know what it feels like to walk on eggshells every day. Sorry to hear that Lyla did end up with the flu after her reaction. MISERABLE. Hugs to you all.... and hopes for more passes soon!

  3. Steph will she eat cram of wheat? or a cereal like that? If so I have a recipe I can give you called super cereal they use it in the nursing homes to put weight on the old people....let me know and I can get it to you. So sorry...