A Joyful Army of Six

We are Brian and Cara Bergeron. We currently live, homeschool, work, and play soccer in beautiful Southcentral Oregon. We are children of God, children of two marvelous sets of parents who are still happily married, children of the '80s, children who fell in love when we were but children, children who have inherited four unexpected and undeserved blessings from the Lord--Brandt, Gresham, Seth, and Evangeline. Together we are (as Eva will tell you with a shout) "in the Lord's army. Lethirrrr!"

Monday, January 28, 2008

Update on Evangeline

Our visit with the metabolic specialist in Portland was really wonderful. He spent 1 1/2 hours talking with me and, after looking Eva over thoroughly and talking about her past problems, he said that he does believe that there is something metabolic going on but that he doesn't believe their more drastic testing will turn up the proverbial "needle in the haystack." Instead, he seems to think that her body, when she gets sick, just burns through carbs so quickly that she immediately begins to burn fat as sugar. When that happens the body produces ketones and the ketones cause her brain to think that something deadly is occuring and that it needs to get rid of the problem. So she vomits more. When she vomits that further depletes her body of sugar/carbs and she burns more fat, producing more ketones in a vicious cycle until she's finally ketoacidotic and has to have vast amounts of fluids in order to recover.

For some reason her body is tricking itself and the metabolic doctor seems to be okay with the lack of explanation. He sees much more complicated developmental and neurological cases every day. He did, however, say that usually kids like Eva grow out of their metabolic condition and that he doesn't routinely see teenagers coming in with this same problem. The explanation was not, however, good enough for our local pediatrician who has now referred her to an endocrinologist. I haven't yet seen the results for her liver function test or her metabolic panel or her urinalysis. I'm hoping to get those tomorrow.

While we were in Southern California last Monday we had the opportunity to test the metabolic specialists "management techniques." Eva began to vomit (the other kids and Brian were sick as well). This time we were able to start her Zofran a few hours into the vomiting and it was controlled with 1 1/2 doses (I only give her 1/2 dose at a time). We were able to get a bunch of juice/water mixture into her so that her body had some carbs to burn and we avoided the dehydration and listlessness and eventual rundown of past episodes. Praise the Lord for this!

On Friday, we discovered that either Eva's never been tested for celiac disease as we thought she had been or the results have been lost. So I took her for a celiac blood panel at our local hospital. I also took Seth & Gresham for the same. After talking to several friends whose kids all have celiac disease, and too many doctors saying to me, "Are you sure Eva's been tested for celiac?" I finally took the hint that I believe the Lord was giving and asked to get them all tested. The one thing that I sincerely ask any of you reading this to pray for is an ACCURATE test result for these panels. The blood tests for celiac are often inaccurate or inconclusive as the results depend heavily on eating gluten beforehand so that the immunological response can be determined. Since we're not eating a diet with much gluten at all, it's dubious that the results will read well. However, both Brian and I believe that the Lord has brought us to this place and that the conversations and testing were signs from Him to pursue this lead. At this point I wouldn't exactly WELCOME a celiac diagnosis; but I do feel like it would give us hope for a better prognosis.

It's not that we second-guess the Lord's perfect plan. He is still working in our family and in each of us as individuals as we go through the allergies and the new diets and the blood tests and the doctors together. It's just that thinking and researching and making appointments, meeting with doctors takes up so much precious time. We really want to get beyond this "wondering stage" so that we can walk more simply in obedience--and so that we can walk forward instead of in circles--even if it means we'll never have another slice of homemade bread or a beer again. We have faith that the Lord will not leave us to wander the Sinai peninsula forever!