Ellie's detox went from manageable to critical within 24 hours. When we increased her coconut oil from 1/2 teaspoon a day to 3/4 teaspoon she suddenly manifested symptoms we have not seen since February of 2011, plus a few new ones.
We pulled coconut oil.
L.a.m.e.
Last night she was wheezing and coughing, snotting and draining. And having trouble breathing. Today I skipped her dosage, and after a four hour nap with the humidifier going she woke up bouncing and practically her old self. That fast?!
I was left wandering around today wondering how in the world we would manage a little body that rids toxins via the sinuses and lungs.
Thinking and researching and cooking and sourcing. (yeah so what's new. nothing there.)
As I sought out new treatments for detox and possible medications, it has seemed a little bit.....surreal. Recommendations that include false unicorn root and activated charcoal leave me feeling like I am entering a new land....a land somewhere between the Shire and MacBeth. In fact, sourcing Ellie's food often feels like I am asking someone for dragon scale or eye of freakin' newt. But I am reminded of the grade school lesson that just because you don't understand something does not mean it is bad (or have cooties).
So coconut was not an FPIES fail. It was another sign of a toxic little body working hard to heal, and a mommy who just does not know enough.
While at the WAPF conference I had the amazing gift of getting more information about a doctor who is a couple hours drive away. Nine months ago I looked him up, and thought 'no way. I bet this guy recommends eye of newt'. Today I pulled up his contact information, and made a new patient appointment for Ellie, hoping that he would know how eye of newt works, what it helps with, and would maybe even write a prescription for it to help with the cost.
That is the GOOD thing about coconut. It finally helped me to say: I can't do this by myself anymore.
While I will forever be indebetd to Dr. Natasha for her continual emails of direction and hope, there is only so much an occasional email can provide from another continent. The top, numero uno, GAPS trained-MD-plus lives within a 2 hour drive of us. I think that might be more divine than coincidence. It's time to go see what he has to say about FPIES. Should I warn him we are coming?
I think it is quite "divine" that the State-side FPIES expert happens to live within a 2 hour drive of you! And, I think that it's incredibly wise to at least go meet this doctor and see if he can be a local source of help so that you don't have to do this alone anymore. You're amazing, my friend. You are the very definition of perseverance!
ReplyDeleteThis one made me laugh. Can't WAIT until the appointment!
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