Journal entry by MARY-ANN BOWMAN

While I suspect everyone would prefer to hear directly from Galen and/or Bethany, you all are stuck with Grandma once again; they have given me the green light to update.

A lot has happened -- and not a lot has happened. Let me explain.

Berkeley will be seen at Primary Children's in Salt Lake City on Monday. That appointment (with Endocrinology) will be interesting and we hope informative.

I am here in Boise and will go with them to Utah in order to help with Lincoln (their infant) so that both Galen and Bethany can be attentive/present during Berkeley's appointment. 

A lot of you do not know me but for those that do, it will not come as a surprise that I have been obsessively researching and reading about Berkeley's symptoms. Her parents gave me access to her medical record, including lab work; this generated even more obsessive researching and questioning.

I also have REALLY smart and generous friends with incredible patience for my questions, and a willingness to speculate with me.

And that is how/why I offered a gentle suggestion to Galen/Bethany over a week ago -- "How about trying a low fat/high carb diet with Berkeley?"

We got the family Dietician involved -- thank you Megan! -- and Berkeley was started on a diet that focuses on high carbs with lower fat. 

The results have been dramatic. 

Her dangerous low blood sugars, which happened every single day, are no longer happening. As they gained confidence in the stability of her blood sugar, testing (aka poking) of Berkeley has been reduced. And Berkeley FEELS so much better -- it is obvious in her activity level and behavior.

We do not know why the diet has helped -- is it the lower fat? Is it the elimination of almost all dairy products (since they tend to be high fat) with the corresponding reduction of lactose? Is it something else?

All that is known is that diet changes have helped with symptoms -- and that reality is important information for the Specialists who will be helping to figure out what is happening with Berkeley. In addition to the Endocrinologist on Monday, Berkeley has an upcoming appointment with a physician who specializes in genetic diseases.

I cannot say enough about the excellent and attentive care that Berkeley is receiving from her parents. Their thoughtful, intentional, and collaborative approach to whatever is going on with their daughter is why Berkeley remains safe -- that is not hyperbole. 

Thank you so very much for your ongoing support of this little family. Please send up thoughts and prayers that answers for Berkeley are forthcoming in the weeks ahead. We will update again from Utah.





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