About a year ago Fiona's t cell function dropped. We just got her antigen test back. Her pha stimulation result is 5682, normal is >=135190. That means that when her t cells are stimulated with a chemical called phytohaemagglutinin, they don't respond properly. Her Candida and tetanus responses are low too.
She is over RSV, which is amazing. I was worried about her cough, then it was gone. Igg replacement is working. Now if they could figure out a way to fix her t cells she would be in great shape.
Tuesday, December 30, 2014
Friday, December 26, 2014
Our best Christmas gift!
We just got the news that our insurance approved genetic testing for Fiona!
Thursday, December 18, 2014
Cincinnati visit
Fiona's nasal swab came back, she has RSV. So far it's just a wet, barky cough and runny nose. Her t-cells are all the lowest we've seen, probably due to the virus lowering her immune system. In an effort to protect her from other infections while her immune system is low we are keeping her in full isolation. Because of Fiona's immune deficiency she may be contagious longer than normal, according to the CDC, up to 4 weeks.
We learned about a researcher in Canada who is working on injecting bone marrow into immune deficient mice. If they injected Fiona's bone marrow into the mouse and it grew normal t-cells then they would know that her thymus is the problem. If it didn't grow t-cells they would know that her bone marrow is the problem. Is it weird that I really, really want a lab, and an immune deficient mouse?
Our doctor consulted with European doctors about Fiona at a conference recently. They agree that because she isn't extremely sick, she doesn't have auto immunity, and her counts and function are okay, that we should take a wait and see approach. As a parent, wait and see stinks! We really want to fix this for her.
We learned about a researcher in Canada who is working on injecting bone marrow into immune deficient mice. If they injected Fiona's bone marrow into the mouse and it grew normal t-cells then they would know that her thymus is the problem. If it didn't grow t-cells they would know that her bone marrow is the problem. Is it weird that I really, really want a lab, and an immune deficient mouse?
Our doctor consulted with European doctors about Fiona at a conference recently. They agree that because she isn't extremely sick, she doesn't have auto immunity, and her counts and function are okay, that we should take a wait and see approach. As a parent, wait and see stinks! We really want to fix this for her.
Monday, December 15, 2014
Sick again
Before we found out about Fiona's immune deficiency I took her places. Every time we went to the store she got sick. I kept her home when she was sick, but once she got better I took her out again. She had a string of viruses that she picked up from shopping carts, and sick shoppers. I thought something was wrong, but didn't know what it was. The year before she was diagnosed she was sick from Fall to Spring.
I'm starting to feel like it's happening again. Every time we take her out she gets sick. It's funny, because we take her out so infrequently I know where she picks up every virus. This one came from Michael's. We took the kids out to pick up some supplies for a project Savannah had at school. We went late to avoid crowds. We were the only family in the store. I wiped the shopping cart with a disinfectant wipe. We did everything short of making her wear a mask and gloves.
I hate how many experiences she misses. In January she moves up to Sunbeams at church. She won't know. She had a month of nursery before we found out she couldn't go back. Most of my kids started preschool at 3. She won't. Even with her infusions it's not safe. We took her our church Christmas party last weekend. One of the hardest things for us as her parents is weighing social development with safety.
Normally when she gets sick I worry, then call all of her doctors, then have them run labs. I'm trying to take a wait and see approach this time. We are going to Cincinnati on Wednesday, so I'll have them check for viruses then.
We are still waiting to hear back from our insurance company about our appeal for her genetic testing. It's a test they shouldn't have denied. I feel like they're hoping that we'll just give up.
I'm starting to feel like it's happening again. Every time we take her out she gets sick. It's funny, because we take her out so infrequently I know where she picks up every virus. This one came from Michael's. We took the kids out to pick up some supplies for a project Savannah had at school. We went late to avoid crowds. We were the only family in the store. I wiped the shopping cart with a disinfectant wipe. We did everything short of making her wear a mask and gloves.
I hate how many experiences she misses. In January she moves up to Sunbeams at church. She won't know. She had a month of nursery before we found out she couldn't go back. Most of my kids started preschool at 3. She won't. Even with her infusions it's not safe. We took her our church Christmas party last weekend. One of the hardest things for us as her parents is weighing social development with safety.
Normally when she gets sick I worry, then call all of her doctors, then have them run labs. I'm trying to take a wait and see approach this time. We are going to Cincinnati on Wednesday, so I'll have them check for viruses then.
We are still waiting to hear back from our insurance company about our appeal for her genetic testing. It's a test they shouldn't have denied. I feel like they're hoping that we'll just give up.
Thursday, December 4, 2014
quick update
Fiona is over her cold. She had parainfluenza 3. It causes croup. We bumped her hizentra up a gram, hopefully she'll be protected a little better for the winter.
I think we'll get the hizentra copay assistance. That means they will pay up to $4,000 of the copay for Fiona's medicine. Last year we paid $2,700 every month for her treatments. I'm not sure what the copay will be in January. I'm trying to time everything so her medicine will be the first insurance claim. I'm hoping to use all of the copay assistance.
Fiona's treatments are still going well. I had to hold her down a little more than normal last week. Trying to poke a wiggly 3 year old is challenging. She is fine after the needles go in, but we are seeing more anxiety again.
Fiona goes back to Cincinnati in two weeks. Our insurance company denied exome testing saying that they needed more information, and they won't pay for the test unless the results will change her treatment. Our team from Cincinnati wrote them an awesome letter about why they should pay for it. Now we wait for an answer.
I think we'll get the hizentra copay assistance. That means they will pay up to $4,000 of the copay for Fiona's medicine. Last year we paid $2,700 every month for her treatments. I'm not sure what the copay will be in January. I'm trying to time everything so her medicine will be the first insurance claim. I'm hoping to use all of the copay assistance.
Fiona's treatments are still going well. I had to hold her down a little more than normal last week. Trying to poke a wiggly 3 year old is challenging. She is fine after the needles go in, but we are seeing more anxiety again.
Fiona goes back to Cincinnati in two weeks. Our insurance company denied exome testing saying that they needed more information, and they won't pay for the test unless the results will change her treatment. Our team from Cincinnati wrote them an awesome letter about why they should pay for it. Now we wait for an answer.
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