We increased the ratio to 4:1 to only see an increase in seizures so we are back to 3:1. We are going to Johns Hopkins next Tuesday for a follow up visit to discuss our next option...stop diet? new medication? wean clobazam? I so want her off clobazam but I highly doubt the doctor will think this is the right time.
Sophie's walking is getting better everyday. She is walking everywhere. She just is not consistently steady. We are working on transitioning from a sit to a stand without any assistance. She will be much happier once she can stand up all by herself. Right now she needs something to pull up on. I believe she could stand up by herself if she would only try but she is really dependent on looking for something to grab onto.
We met with her local neuro last week. Sophie had a 1 hour EEG. The EEG showed some improvement over the last one (back in March). Her background rhythm looks a bit better. She is still having bilateral spike waves mostly in the frontal lobe. We also spoke with her neuro in Detroit and he would like to do a repeat PETscan once she is off the diet (you cannot do the PETscan while on the diet because of the change from glucose to ketones). So for now we are waiting to find out what will happen in our appointment at Johns Hopkins.
Sophie's walking is getting better everyday. She is walking everywhere. She just is not consistently steady. We are working on transitioning from a sit to a stand without any assistance. She will be much happier once she can stand up all by herself. Right now she needs something to pull up on. I believe she could stand up by herself if she would only try but she is really dependent on looking for something to grab onto.
We met with her local neuro last week. Sophie had a 1 hour EEG. The EEG showed some improvement over the last one (back in March). Her background rhythm looks a bit better. She is still having bilateral spike waves mostly in the frontal lobe. We also spoke with her neuro in Detroit and he would like to do a repeat PETscan once she is off the diet (you cannot do the PETscan while on the diet because of the change from glucose to ketones). So for now we are waiting to find out what will happen in our appointment at Johns Hopkins.
1 comment:
Glad to see there was some improvement noted on Sophie's EEG! Hope something positive comes from Hopkins check up.
Hope Sophie is ready to meet up with her second cousins again in a couple weeks. Sara can't wait to get her hands on her!!
See you soon. Love to Sophie.
Love,
Barb
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