Immunocompromised

Yep, that’s right. Evie is immunocompromised.

You’d think 18 months in, that we wouldn’t be getting new, shocking information, but Evie really does NOT like to play by the rules!

A little background: When Evie was about 6 months old, we started hearing that CHARGErs should see an immunologist, as there is not a lot known about the CHARGE immune system yet.  We made an appointment in Iowa City and had our first meeting with them at the beginning of April. We chatted, they drew blood, and a few days later I got a phone call saying that Evie’s immune system was normal. Yay!

So you can imagine my surprise when we had our followup appointment six months later and they went over how her T-cell count (a certain part of the immune system) was low (I cannot even tell you how many appointments we’ve had that were supposed to be routine followup and we got handed a huge shock that we didn’t see coming. It sucks every time.).  Apparently they take two different readings of the different types of T-cells, one that measures the absolute number and one that measures the percentage. Now how in the world these two numbers are different, I don’t know, but her absolute numbers were in the low normal ranges, but her percentages were low. So when the nurse called me with results, she only looked at the absolute numbers, but apparently the percentages are more accurate. Lovely.

Another part of her immune system, immunoglobulins, was within normal ranges, but definitely on the low side of normal. They decided to not redo bloodwork until the next appointment in six months, but that really bothered me. I wanted to know more clearly how her immune system worked before we got into winter!

So yesterday, we went to see Evie’s pediatrician to discuss these results as well as some other concerns we were having. She seemed just as concerned about Evie’s immune system and decided we should just redo the bloodwork there.  Evie is currently fighting off a nasty bug, so we hoped to get a picture of what her immune system does when she’s sick.

It wasn’t very good.

Good news first: her immunoglobulins went up. This part of her immune system seems to function at least fairly well (though it may be supplemented by my immune system as immunoglobulins are passed through breastmilk to help support the baby’s growing immune system) and helps fight off bacterial infections. This explains why she’s not getting really any ear or trach infections and why she doesn’t, as her doctor put it, “go down like the Titanic every time she gets sick.”

Bad news: her T-cells were still low. This time they were low in both percentage and absolute number.  T-cells are the part of your immune system that go after viruses, which explains why Evie catches every.single.cold out there and takes soooo long to recover.

We can already see God’s hand in protecting her as we look at her trach. If Evie didn’t have her trach, we would not have worked so hard to protect her these last 18 months and it’s very possible, she would have caught a much more serious virus than a cold and spent a lot more time in the hospital. Or it’s possible we would have lost her.  I am also incredibly grateful that God orchestrated the things necessary so that I could continue pumping for Evie this long.  The fact that my immune system is supporting hers possibly made a huge difference in how healthy she’s been.  Fortunately, her immune system is working well enough that she doesn’t just plummet every time she encounters a cold, but how she’ll respond to more serious viruses, we just don’t know.

So what’s next for Evie? We’re not entirely sure yet.  The results from yesterday’s bloodwork are being sent up to her immunologist and they’ll help us figure out the next step.  If she only had low immunoglobulin, she could actually get injections of more to boost her own immune system, but there is no known way to boost t-cells. We’ll be taking a closer look at her thymus, where t-cells are produced to see if that is functioning properly.  And we’ll hole up.  I don’t know how much yet, but it will be all through winter.

We’d appreciate your prayers as we venture into yet another aspect of Evie’s care and as we head into cold and flu season.  And please, please, please, if you have even an INKLING of being sick, or if your kids were just sick, or if you went and visited somebody who is sick, AVOID US. Or at least warn us. Even if it’s “just a little cold” or “only a runny nose” or “your kids got over it quickly”.  It will always be much more serious for Evie and we’d like to keep our crazy three year old from hugging all your kids (since she’s usually the first one to get sick, has it last half a day, then passes it on to her sister who stays up all night coughing and needing suctioning, so Ty and I don’t get any sleep, so then we get sick. It’s a fun cycle we’ve repeated many many times. In fact we’re going through it right now.). Thank you again for all your prayers. We’ll do our best to keep you updated on what we discover.

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3 thoughts on “Immunocompromised

  1. Sorry to hear this. New info, especially this far into things, sucks. I must say, this makes me paranoid. We had our t-cells checked at the end of October and we got the results when we were in the PICU after his surgery. They said his numbers were low normal, but how would I know if they looked at the percentage as well? Ugh. I guess another question for follow-up whenever we get our appt. 😦

  2. I have 2 immunocompromised children. My friends and family thought I was just being paranoid when we stringently warned against no sick visitors [and I don’t care if YOU think it’s only allergies]. We went through a lot of heartbreak over folks who simply refused to comprehend the seriousness of the situation.

  3. A couple of friends shared your post on special needs parents and I had to read it. Then I saw the link to this post. I have an immunocompromised daughter (almost 5 years old) with low T-cells and low immunoglobulins. She gets weekly infusions of immunoglobulin and does pick up every single virus ever. We recently learned that my six year old son is immunocompromised as well. If you ever want to talk to another mom about this, I’m available.

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