Summer is Now in Full Swing
I can’t believe it has been a whole month since I last wrote a post. With school ending, camp starting, and trips to two states and another country, it has been a bit of a whirlwind. It is hard to determine where to start.
Well, for the latest nutritional update, CB had blood taken today so we will know in a week or so whether his vitamin levels are back to normal. I believe I mentioned we ultimately decided to completely cut out dairy again. It just really seemed like the factor contributing to the declining levels. We will see soon. Otherwise, for the last month, CB regularly gets probiotics at night, but that has been the only supplement. We will most likely add the enzymes back in to help with his regular smelly gas after he eats. We were waiting to make any additions/changes till after we receive the blood work results. We quite giving him the vitamin D drops b/c he is getting so much sun everyday. We will also need to think about adding the multivitamin back in. I am really curious to see how his Vitamin E levels and to see if his fat absorption has improved.
I have now met another family with the same genetic mutation as my son. It was so affirming and feels really good to know you are not alone. Although our children are different, it is easy to tell how the genetic difference greatly impacts both our children’s lives. Still not much is know about SETBP1 loss-of-function mutations so we still have to address each symptom, i.e., speech therapy for the motor-planning disorder, OT for the fine motor challenges, PT for core strength, balance, and coordination, diet for sensory needs, etc. It would be nice to be able to help the root cause, but who knows if/when during CB’s life this level of information will even be known. I am reaching out to as my knowledgeable professionals and researchers as possible to find out what we can. (more…)
June 29, 2016 Allergy, Diet, & Supplements, Genetics, Growth and Progress 0 Read more >