And did we soak up the info! It was nice to finally be in a room full of people...all who were aware of galactosemia and just as concerned as we were. It was also very, very hard. Here we are, in a room full of "experts" -- and yet, no one can agree on diet, no one can tell us with certainty what foods are safe and what are not, and more importantly, none of the "experts" are even sure diet restrictions are even improving the outcomes of galactosemics.
So you've told us our child is galactosemic. You've told us the only "treatment" is to make sure she has a diet low in galactose. You've given us a list of foods that are "safe", "questionable", and "forbidden"...and told us to relax and use our best judgement. (Those of you who know me, know Momma doesn't "relax" very well....particularly in this situation.)
We also learned that the "experts" are starting to think strict diets aren't exactly creating better outcomes for galactosemics. (ie. what "damage" is done, is already done...possibly in utero, so diet, aside from seriously high galactose foods, is of little consequence). SO...now the one "treatment" that I've been tearing my hair out trying to follow (strict diet), is now, "not necessarily helping" -- and they feel we should relax our diet restrictions. But, they're not sure, not exactly sure...we need more research...so in the mean time...do what you think is best...what makes you comfortable.
Momma is anything but comfortable.
I would have to say the conference was a real eye opener...to all that we don't know. It's terribly frustrating, as all we want to do, is what's best for Annie. It's very hard, to not know what's best for your baby.
On a sunnier note! Life does go on! After the conference was over, we were able to get out of our hotel and do a little sight seeing -- we had a gorgeous day to wander Minneapolis and truly enjoyed the chance to have some fun.
Most of our PGC Midwest group :)
Minnehaha Falls
The Cherry
Annie walkin with a little bit of help.
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