Caller: It’s Neuro Nurse from Neuro Doc’s office. I have the results of Ellie’s Depakane level. It’s at 75 which Neuro Doc is satisfied with as long as she is not having any symptoms.
Me: She is not having seizures but she refuses to eat.
NN: When did she stop eating?
Me: (thinking: ok this is the 3rd time I have reiterated these same details) She stopped eating shortly after she started the Depakane last May.
NN: Depakane is given to people who have weight gain issues.
Me: Yes, I know. Initially for the first two weeks Ellie at a little more than usual but after that then she refused to eat full stop. Are there any other seizure meds we can try or is there something natural I can give her to increase her appetite? I think the Depakane is taking away her appetite.
NN: Doesn’t she have a g-tube?
Me: Yes, but she used to eat all her pureed foods. She would eat 1.5 cups in 10 to 15 minutes. She even used to make a little mmm, mmm sound as she ate. She liked her food.
NN: (long silent pause) Why was the g-tube placed?
Me: When she was in the NICU because they wanted to send her home. I regret that decision because it masked neurological pressure symptoms later on and greatly increased her reflux.
NN: If she is keeping the food down and is symptom free we wouldn’t want to change the medication.
Me: She is not symptom free. She’s stopped eating. It’s a quality of life issue. She CAN eat but won’t at this point and all of that coincided with her taking Depakane. Her dysphasia is so much better at this point. She had a swallow study and was cleared from thin liquids. We don’t always want her to have a g-tube because I know she can eat. I know she used to enjoy eating.
NN: Well, sometimes Depakane can affect the palate. I will run this by Neuro Doc.