So we made the trip to UCLA to see Tiara’s neuro-psychiatrist and like I thought she didn’t have a great deal to offer. The good news is that when I was talking to her and discussing what has been going on we both came to the conclusion that Tiara is either toxic from her medication or she is having seizure activity that I can’t see. Guessing it is the latter option.
These assumptions are based on Tiara’s increased aggression, significant loss in balance, increased tiredness and overall moodiness. She did offer adding another medication that she uses on other TSC girls in Tiara’s age range but none of them are on Tiara’s huge cocktail of medications. As a result, she decided that prior to giving Tiara any additional medication she would discuss Tiara’s case with her neurologist tonight and get back with me. She thinks Tiara should have a full neurology work up since she hasn’t been on EEG since June 2011 after being released from the hospital after her brain surgery. I told her there may be no point in going through such a difficult and costly process if medically they can’t do anything to help Tiara’s seizures. This is exactly the place she was in 2011 pre- brain surgery, but everything was a million times worse.
Either way I know Tiara is in the best hands and they will do everything they can to help, but ultimately I know in my heart there isn’t much anyone can do.
And now to a funny story……
Since Lou was off today I asked him if he and Trinity could do dinner since I wouldn’t be home from UCLA until almost 5:00. And this is what they brought home.
I mean is this a joke? First of all I would never serve my family Alfredo sauce from a jar off the shelf. At least buy the one in the cold section. Second I don’t serve white pasta unless it is a treat. I serve brown rice pasta or wheat pasta. And for the Tostitos, I mean a dinner food? Of I forgot they also bought 1 pound of shrimp even though I always need to buy at least 3 pounds of the protein to feed everyone. There plan was to serve guacamole and chips for an appetizer followed by shrimp Alfredo on pasta.
A nice Mom would have thanked them and eaten all the crappy food after they prepared it, but not this Mom. I looked at them, rolled my eyes in disgust. I prepared a cauliflower for the oven, drove to the store, bought a salmon and lettuce and came home and made a decent dinner. Protein, veggies, fruit and no white CARBS! After I made my dinner, I exited the kitchen and told them they could make their dinner now. I am guessing Lou works so much he has forgotten how to put together a decent dinner and Trinity the queen of junk food planned the meal in question. Lou confirmed my theory. Oh well, at least they tried, I’ll give them that.
Have a great weekend!