It has been over a year since I last gave a health update on EL. I have shared a few updates on my Facebook page but, for those of you who are not on FB, or for those of you who might have missed the updates, here is the latest info...
1. After EL's medication was increased in November 2015, her seizures continued to return every couple of months. So, in July 2016, her Neurologist said it was best to add an additional medication. We were concerned, at first, with the possible side effects of this new med, but she did amazingly well and has, thankfully, been seizure free since then. It is great to know we finally seem to have the seizures under control!
2. Her 5th MRI was in October 2016. There were no changes to the pituitary tumor, so that is another praise. She is now seeing a new Neuro-oncologist, and we like her. She seems very thorough and wants to make sure EL is getting the proper care needed. The previous doctor was good, but gave us the impression that we no longer needed to bring EL for any more follow-up MRI's (after this 5th one) because they keep coming back as unchanged. However, this new doctor explained that a pituitary tumor can grow at any time, so we need to continue keeping watch and do an MRI at least every 2 years from here on out, or sooner if she begins having symptoms.
3. The new Neuro-oncologist also scheduled EL to have a special eye exam that tested her vision, specifically her peripheral vision, called a Visual Evoked Potential. A pituitary tumor can affect the optic nerve, so the doctor wanted to have a baseline of how well EL is currently seeing. The test was done on December 14th in St. Louis. It was done in the EEG department, where they attached electrodes to her head and had her sit and stare at a red dot on a computer screen while black and white squares flashed around it. She did not like the test, but did fairly well considering her dislike. Due to the holidays, it took awhile to get the results back. But we finally got a call yesterday, and the test showed everything to be within normal limits.
So, with all this new information, the plan is to continue seeing the Neurologist every 6 months regarding EL's seizures. But, we will NOT need to have any more testing regarding the pituitary tumor (MRI's, Visual Tests, or bloodwork) until October 2018 (unless symptoms appear)! We are so thankful for this news, and are also grateful for all the prayers that have been sent through the years for our special girl!