We had new labs drawn earlier this month. Almost everything is normal. I'm waiting to hear back about the other stuff.
There are some things about her t-cells that are off, but I don't know if they are a problem, because they've never been off before. I'll post more when I know.
She has antibodies to CMV (cytomegalovirus). Most adults have CMV, and don't even know it. It's only a problem for people with immune deficiencies and pregnant women. It remains dormant in your system for life, and can be reactivated. This is the first time she's tested positive.
Her antigen response to candida and tetanus are low. Her candida response has been much higher than it is now. Candida response is usually linked to helper t-cells, and her helper t-cell level is really good right now. I always thought her low candida response was because of her low helper t-cell level. Her tetanus has always been low. No one naturally responds to tetanus, we develop a response from our vaccines.
She doesn't have protective levels of diptheria, some strains of pneumonia, and tetanus. Her antibody levels were so low before we knew her vaccines didn't work. She will need to be revaccinated.
The great news is she has been really healthy. She's growing, she's learning about social behavior, and she's a wild girl. She loves dinosaurs, and playing outside. She says she wants to be a nature tracker (from Dinosaur Train).
Last week she told me that she wanted to live in an apartment building that we drove past. She said the strangers there would take good care of her. I asked why she wanted to live with strangers? She said she didn't like the food at our house, and the strangers would feed her lots of fruit. The day before I brought home plums, grapes, and bananas.
HI, I am a mom of little boy (11yr old ) Cam. We literally just got back from Cincy Children's last night and are on this journey for a diagnosis for him. We went there with the idea that we coming for a second opinion on the Crohns dx we had gotten and started to treat with with IV Remicaid. I am tears as i read some of your posts and what brought me to your blog was me becoming a google md and trying to figure out what the CD45 Raro test results could mean.. he normally has low range IGG and IGA levels this week they are in the low normal range. (discouraging since I am just wanting him to present wonky so the doctors will help us.) some tests are H or L but this CD45 Raro test he is HIGH OR LOW and the findings was that it was not normal like the others are being found.. I am at a loss as to what this means.. It half scares me because I am trying to understand Immunology more than I ever did. Do you mind if I ask what your daughter has? Cam presented with Gut pain and extreme joint pain and we slowly ( only because I have pushed for it) to dig into his immune function because he has always been sick. I made binders for all the specialties that we saw this week at Cincy and just his Pediatricians medical records is insane how many times this kid has presented with illness in the past 5 years. I am fried and scared and just needing to know I am not crazy.. Would you mind sharing with me what you know of that test and what it has meant for FI? I also want you to know your entire family will be in my thoughts and prayers.. She has a warrior for a momma.. We are rare.. when you wont except just any answer until its the right one.. You can reach me at jen.heeter@gmail.com or my number at 702-375-4605.. I would love to pick your brain on this since it looks like I might have a fight ahead of me.. Plus to know I am not alone and I am not crazy would be nice.. :)
ReplyDeleteI have a 3 yr old with an immune condition similar to Fiona’s also w T cell issue and now on Hizentra. I find your blog v helpful. Is there a way to reach you?
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