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.
CB is now experiencing greater success walking down steps one foot per step without support. Over the last few months, he has really been working on this skill and almost has it mastered. He can now walk about 6 steps in this manner before he puts both feet on a step before proceeding again. His language is continuing to grow and we now hear more phrases that he picks up on his own from camp. For example, he said “Oh, gosh” during dinner last week. I can’t say we use that phrase at home :). He is still fighting saying “Me do” or “Me go” versus using “I” as the subject, but both of his speech therapists are really working on it. We are also working on this at home, as well. The word “Me” is much easier to say than “I” and he has it pretty hard-wired into his brain so we are trying different avenues to create different pathways that will reprogram using “Me” as the subject in his sentences to using “I”. His use of prepositions and the appropriate interrogative words is improving. The “L” sound is still quite challenging except in limited situations. His biggest challenges still remain expressing thoughts that are longer than 2 sentences long. His OT says his pincer grip is improving and that she thinks working on buttons will start soon.
Behavior-wise, he had a little regression at the end of school/beginning of summer, but that is probably to be expected with all the schedule changes and trips. Hitting and kicking are still regular goto options for him when he gets frustrated. He also still blurts out certain words or phrases or loud, shrill sounds quite often during quiet moments, while playing or I guess whenever he feels like it. Fortunately, he is using “bad boy” less as a blurt out phrase but unfortunately now uses “stupid”, a lot. I have heard how kids with adhd will many times focus more on the negative than the positive, and we see that more and more with CB. I think this is partially shown through his choice of blurt out phrases and his still common statement of “I can’t”. We have seen an increase in behavior where he hits his younger brother when his younger brother is already crying. CB says he doesn’t like the crying so we know the hitting is a reflection of that feeling. On the other hand, CB and HB are playing together longer and longer without incident and their play scenarios and imaginations are growing. Each time they are apart, for even an hour or two, when they see each other, they run to each other, give the biggest hugs, and talk about how much they missed each other :). It is so heart-warming.