6.21.24 Vitamin B trial

It has been a few months and it is past time for an Aimee update. We are rather threadbare, so there is not typically much left over for communicating, but there are a few developments to share.

Following our Great Wolf Lodge stay, Aimee needed a 2 week course of an IV antibiotic. Since that time, she has needed it every other month and so her pulmonologist has decided to place her on a scheduled use. She now runs on it for 2 weeks, followed by the inhaled antibiotic for 4 weeks, then a 2 week pause before starting the IV antibiotic again. This is for the reoccurring tracheal infections. This new routine is covering Aimee’s needs much better, so she is more stable. 

The big news is that Aimee’s new neurologist wanted us to trial very high doses of IV vitamin B6 added daily to the TPN. There was a study done showing seizure control and developmental improvement in the hospital setting for infants with KCNQ2. With much drama, we were able to start the trial 3 weeks ago. It has been surprising to me, but we are actually seeing some results! Not at all the ones I was looking for honestly, but they are quite exciting. It seems we are seeing improvements in several areas of neurological function. First of all her vision has been much improved. During school she is actually scanning the books when I show her pictures. Aimee sees best in her left side upper quadrant, but she will glance to the right. The other day, Louisa stood on Aimee’s low vision side and read a card she had made for her. Aimee watched her and was looking at the card. She sustained looking at the doctor who was talking to her before performing a tube change procedure last week. She has been almost daily looking at me when I talk to her. This is a huge!

Beyond vision, she is more consistent with her alertness, has more stable temperatures, a massive increase in ostomy output up to normal levels, and even some return of movement like bringing her hand to her mouth that we haven’t seen in a couple years. She even seems to be okay spending some time in her wheelchair again. 

I don’t know yet what will happen from here as we were approved to trial the vitamin B for 1 month. It has been quite a bit of drama to even do the trial. The IV version is only available in 1ml vials, so we have to draw up and administer 16 of them each day, which is an increased infection risk. Also, there is concern about the amount of aluminum in each vial, blood work issues, ect. However, this is the first hopeful progress in so long. These are more glimpses of Aimee peaking through the fog and it is so good to see her soul more present in her body.