July Update

Afinitor: We have spent a lot of time at hospitals lately. First Lily had a huge canker sore outbreak from the Afinitor. It came on so fast and her whole little mouth and lips were swollen. It seems that the 7.5mg of Afinitor may be too high. The last labs showed that Lily's meds had all dropped by half. She'd had a growth spurt so this seemed plausible, and she was having increased seizures, but maybe this was a lab error or one of the meds from her adenoidectomy caused a change in absorption? We're hoping the new labs that we got on Monday will tell us where she is. Neuro dropped her afinitor to 3.75mg for a month while the sores heal and then on August 15th we'll go back up to 5mgs.

Seizures: We've had an increase in seizures for awhile. 1-3 a day lasting about 25 seconds. The other night we had a 4 minute seizure and had to give an emergency med. The seizures are also making her very tired after--not a good sign. Again, we're waiting on those labs.

Kidneys: We did Lily's yearly kidney ultrasound at Seattle Children's and then went over to Swedish to see her nephrologist for results. Lily has 3 cysts total. She also has amls or kidney stones in one area and some crystallization in the bladder area. We will be doing a 24 hour catheter urine to try and help us determine what these areas really are. It was hard to get a negative kidney result. I wanted to skip the other organ issues of TSC, but that just will not be the case. It made us so sad.

Pancreas/Nausea: Lily has been gagging a lot more lately and seeming nauseous, so we need to check her pancreas to see if all of her seizure meds are causing other issues. Sheesh...poor little thing.

Cognition: Despite all that she's been dealing with medically lately, she is still making progress. She is pointing at her throat for a drink, and she told her speech therapist "NO!" when he kept asking to put a tray on her legs!

This last 2 weeks has been day after day at the hospitals and therapy appointments. We really need a vacation!!! I think we need to write ourselves out a prescription for rest and relaxation! But medical has to come first, and even though she was stuck 3 times on Monday, they didn't get all of her labs, so we have to go back for more. :( I just want to give us all a break....very soon!! Some of the exhaustion comes from the hours of driving on the road to Seattle, so we have decided to move to Seattle proper or a northern suburb...Edmonds, Shoreline, Lynnwood...I haven't spent any time up there, so we'll go and have a look around.