I’ve already mentioned how it’s been a rough year. We thought Trina was having an increase in seizures – then a new potential diagnosis was added.

In 2022 she had several Grand Mal’s and a lot of Cluster seizures after that, which continued into 2023. Her previous neurologist wasn’t able to stop them. She kept adding more anti-seizure meds and that was concerning us. Plus she kept getting worse… Even the pharmacist was saying it seemed like she was on too many anti-seizure meds. That led us to make a change and go back to UCSF to a Dr. Rao, who Trina saw in 2016. In 2016 we’d had a car accident where someone rear ended us at a high rate of speed, causing Trina to have a lot of seizures at that time and Dr. Rao was able to stop them. We are excited to be back with him. However, Trina continues to be struggling with what we are calling now “episodes.” What we described as a pattern that we had been told were seizures, were not lining up completely with all of her symptoms. In our first appt with Dr. Rao, he suggested she might be having PSH or Paroxymal Sympathetic Hyperactivity with ‘storms’ occurring. We changed our verbiage from seizures to episodes. He said they still might be seizuzres as we are exploring what all is wrong. Trina is posturing a lot with these and thrusts herself around day and night, even when sleeping! So, sadly she’s losing a lot of weight. We’ve doubled calories into her feeding tube and do what we can by mouth but that is limited to small amounts of smooth stuff like yogurt. At any rate, please keep her in your thoughts and prayers.

Of course Trina smiles and is cute as can be through it all. Or rather, in and around, the “stuff” that is happening.

The good news is we found an AMAZING caregiver, who is not afraid of the things she is going through and she really loves her. She lives close and is flexible with hours – all the things we need as a family. We feel so blessed as this makes a difficult time less difficult.

One day at a time in this life. You all have a story too as life is complicated for us all. We feel our story is equal to any other and share it to hopefully help others struggling with similar challenges or to obtain prayer. We love to hear others stories as well. Please share yours…

God Bless each and every one of you. That’s all for the current update.

To be continued,

Sandy, Trina’s mom, caregiver and conservator