Appointment Updates

      On Thursday we had our much-awaited appointment. The two hour drive up there went (relatively) uneventfully  but we were about 10 minutes late. I have no idea how it took us 20 minutes to get loaded into the car and out the driveway, but there you have it.

      We went over the blood work first. I can't remember the significance of the creatinine level (oops), but she said it wasn't a big deal. The alkaline phosphatase wasn't a big deal, either  She said that level was probably a little off because it is in kids who are undergoing growth spurts. So, the blood work had nothing we needed to take action on.

      I already talked about Buzzy's poop results at length. What the nurse said we needed to do was get his clostridium down and increase his lactobacillus. So, we added a yeast supplement (Saccharomyces Boulardii) and added a single strain lactobacillus product.

      However, the night before his appointment, I took him off the probiotic that I put him on - my thought being it was too much for him and was causing his decrease in appetite. I guess I was right - since putting him on the doctor prescribed ones, his appetite has returned and he is eating like he used. And I am breathing I sigh of relief. No more self-prescribing for me, I guess.

      She also added methylfolate because of the MTHFR mutation. After he is on all of these new supplements, we are going to follow up with a urine test. I am actually kind of confused about the requirements of the test. I thought the nurse told me that he needed to be on the new stuff for 6 weeks before we tested him. When I read the instructions for the test, it said he needed to be off all of his supplements for at least 24 hours. Hmm. So, I called and asked. And they said he need to be off of his supplements. But, I am still confused - if he needs to be off of them, why wait 6 weeks? Or maybe the follow-up appointment was for 6 weeks out and has nothing to do with when he's on or off of things. Sigh. Maybe I will have to re-read the paperwork.

      And have I mentioned that the thought of taking him off of his supplements for even one day makes me twitch?

      Either way, we go back in about 5-6 weeks to talk about what the urine test results are and see what the next steps are.

      We still have obsessive speech. We still have a lot of time spent playing with vacuum cleaners and my iPhone and not much time being social. We still have me eating holes in my stomach with worry/stomach acid. And there are times when I am proud - so proud - of his accomplishments and then I hear about someone with a child his age (or younger) and what they are doing and I feel like I crash down to Earth again.

      In other random news, today wasn't a particularly good day with speech. Buzzy had a number of frantic, hysterical fits and he did maybe 15 minutes of work. He did well in ABA, so I am not sure what was going on there. I just found it terribly frustrating. I had to stay with him the entire time, and baby kept distracting him. Usually we do speech at the kitchen table, while he's strapped in his booster chair. We had to do it in the living room in his EduCube, which was fine and all, but he was very distracted, as I mentioned.

      Here's hoping all of that is die-off and in another week he makes even greater strides forward!