Friday, July 22, 2011

Prognosis

As we near Ellie's second birthday, all of those same questions keep coming up about her future, as well as some new ones. Since I have been asked them so many times, I can only guess there are others who are thinking them as well, so here are the answers.

Will she out grow it? (or any variation there of: won't she out grow it, when will she out grow it, do they think she will out grow it, is this something she will out grow, etc. etc.)

No. She will not out grow it. The term 'out grow it' is a non-medical and non-scientific term for a condition that suddenly disappears or changes into something else without explanation (and a personal pet peeve of mine). I, personally, wish I could take my honorary medical degree and re-write every poorly written article on FPIES or variations of protein intolerance that are now bouncing around the internet, as well as medical research articles that mislead with their wording. YES, there are situations where children are 'suddenly' able to eat and their protein intolerance appears to have gone away. This is documented in the small amount of research studies that have been conducted. But there are so many variables and each child is very unique in their specific intolerances/allergies, history, and environment. The reasons that the symptoms disappear have to do with intestinal healing and individual immune system response which is very complicated. There are also NO follow up studies (that I have found) on FPIES children who become adults after they 'outgrow' their symptoms. So NO, she will not outgrow it. YES, there is a possibility that at some point her visible symptoms will disappear without medical explanation, but we really have no idea if, when, or what that will mean.

If what you are really asking is 'can she be healed?' then my answer would be a most resounding YES. At no point did we stop believing that the God who made her could choose to heal her instantly. He has not chosen to do that thus far, but we do not give up hope or stop praying for it.

Will she have this forever?

No! (hooray) What Ellie needs is healing, and healing takes time (which is the hardest on this mama). The foods we have her on are part of an intestinal healing program that has been proven for almost a century (did you know Celiac dates back to ancient times?). We have no idea what she will be able to eat as she heals, and only time will tell. Science does say that the more severe foods will probably remain (corn). But only time will tell.

Why are you changing the whole family?
For two reasons:
First, as we have ventured down the path of healing for Ellie, we have learned some things about nutrition and overall health that it would be silly not to just implement for the whole family. It has also shown a path to healing and hope for the rest of us. After all, we see obvious proof in how it is healing Ellie!

Second, it is easier for Ellie. If we can all sit down at the table and have the same meal, she feels included and learns proper social cues, behaviors, and how to relate to food. It removes the millions of 'no that will hurt your tummy' comments, and it creates a safe environment.

Doesn't eating this way cost you a million dollars?
Without launching into a lecture on the 'cost' of parenting and health and the choices we make, I assume people are asking about our actual paycheck and monthly budget. Yes, it did cost a lot at the beginning. Yes, it still costs more than we were spending on food. Yes, there are ways to cut costs and budget. In fact, we eat out a lot less (ok we don't eat out at all) so if we take those couple hundred dollars that we were pretending we weren't spending, and shift them over the food budget, it makes the cost difference not look nearly as severe. If you are truly interested in how to make it more budget efficient, I will be including tips, tricks and suggestions on my new website, so make sure you bookmark The Real Food Place.

What about after she is better/no longer reacts/is no longer severe?
We will never go back to eating and shopping the way we did before FPIES. There are many things about FPIES that has made us better, and I certainly hope we never forget them. We also will never put FPIES completely behind us. It is our life, and the teacher in me has just found a new direction and a new passion. I have a child who started out with simple baby vomit, and who progressed to a state of starvation 18 months later when doctors were stumped. We have found a path towards healing, paved with discovery that could apply to anyone. How could I ever turn my back on that?

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