Our latest phe level results, drawn 3/14 and resulted 3/19.
We have struggled so hard since starting preschool this past fall to maintain good levels, and checking the results always floods me with anxiety. New routines are hard when you don’t have a strong relationship with food.
However, after I drew this lab Braxton came down with a 24 hour illness, including vomiting. So we will see what his results are this week, after I draw his blood today. Illness can raise levels, and he is super sensitive to that, but we also just quit a calorie supplement so it could be a lack of calories.
We are actively making a lot of changes to Braxton’s diet, including a change to GMP formula once we get a good in range number. We will start a slow transition since he rejected all GMP samples.
His Javygtor response is very poor. We saw positive results at first, but again since school started that has all changed. We will likely be discontinuing that medication in the coming months after a solid year of trying. Which is disappointing because it has done so much for him, just not in the traditional ways this medication was developed for.
He has improved mood and behaviors associated with high levels, and stability in his levels. I can confidently say without Javygtor his illness levels would be 12+, but since starting we haven’t gone above 11. His levels have always bounced around too but with Javygtor there is less bouncing and more consistent levels that once hung out in the 2-3 range. It has helped so much with his mood and behaviors that I can no longer really tell if levels are high and am generally shocked when levels do come back elevated because I can no longer predict it based on behavior.
I have very low hopes for improved numbers honestly, but I’ll hope for the best!
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