Thursday, May 22, 2014

more test results

Fiona's helper t-cells are really low again. Normal range is 500-2400, her level is 139. Low helper cells explain the thrush. There are still lots of tests we're waiting for. The good news of the day is that her IGG level is 1030, well within normal range. That means her treatments are working, and giving her protection. I'll keep posting as her test results come back.

Wednesday, May 21, 2014

Possible genetic cause

Fiona had an appointment in Cincinnati today. They've found a gene mutation on the STK4 gene. We don't know if it is manifesting or not. They need to do more tests to see if it is causing her immune deficiency. Her mutation is one that hasn't been described before, she may be the first person to have it. I'll write more later as the tests come back. Our doctor cautioned us not to get our hopes up because they haven't finished all of the testing.

Tuesday, May 13, 2014


Fiona has an appointment with our local doctor tomorrow. A week from tomorrow we go to Cincinnati. I'm not sure what they will say about her thrush. I've decided to take away her binky. Even though we replaced them after she got over thrush last time, I'm worried that they still may be "infected".

Monday, May 12, 2014

A long overdue update

I just realized that it's been almost a month since I've written anything. Over the past month we've been exposing Fiona to the world. I take her to grocery stores, church, and to pick James up from preschool. We've talked about the children's museum and the zoo, but I'm not quite ready yet. Every exposure causes me to worry.

This week Fiona got thrush again. It was about a month ago that she had it the first time, twice in four and a half weeks. I stopped giving her amoxicillin after she got over her last case of thrush. She's on diflucan again. When I called they said that her doctor in Cincinnati may want to see her again. Our next appointment is in July. I'm not sure what this means yet. I'm expecting a call this afternoon.

A new test result came back. It was normal. She doesn't have hyper IGM syndrome. Hopefully someday a test will show us what she has.

Treatments have been going pretty well. Three weeks ago I decided to try a treatment without anti-anxiety meds. I gave her benadryl, tylenol, and numbing cream. She did really well. Two weeks ago I tried the same meds and her treatment was awful. She cried through most of it. Yesterday we switched from three needle sites to four, and we increased her infusion time from an hour and a half to two hours. It made a big difference. She was calm during the whole treatment.

She has developed diarrhea again. I'm going to ask for a stool culture again. Hopefully it's still the same viruses that she had before. We know that they may take some time to go away. She's also running low grade fevers, around 100 degrees.