Immunity

Since my last medical update on Kate, a lot has changed. She wound up "well" for about a week, her only trouble a horrible diaper rash. Then on Saturday the fever and wheezing came back. It was no where as bad as the last time, however, since she had just had such a bad attack on her lungs, I decided to take her in Monday just to be safe. I also wanted to discuss the Flovent with Dr.H. Kate hated this medicine. It is an inhaler that we were using with a spacer and a mask. I am guessing that the Flovent tastes bad because she didn't have any trouble with the Xopeonex. With the Flovent she would hold her breath for a long time and wiggle out of my arms. I just didn't feel confident that she was getting a good, full dose ever.

On Monday, she had a thorough check up and was given the ever so common virus label. There was a little tightness and wheezing, but it wasn't bad at all. We were told to continue the Albuterol breathing treatments as needed. I asked about having the blood work done and Dr. H said that it had been long enough since her last round of steroids and antibiotics and to go ahead and get it done. I don't know everything that she ordered, but it took a solid 30 minutes for the nurse to input all the codes for lab orders. I do know they ordered a Humoral Immunity Panel with subclasses, 20 food allergies and 20 environmental allergies. Dr. H also switched Kate to Pulmicort twice a day via the nebulizer. It is a bit of a hassle to have to take the nebulizer if we are going anywhere and it takes 10-15 minutes for one dose, but I do believe she is getting a much fuller dose with this method.

We left the office at about 12:15 and despite my better judgement, went straight to the lab. There were at least 40 people in the waiting room and not an empty seat to be found. I waited at the check in window for 10 minutes hoping to schedule an appointment and when no had shown up, we decided to leave. We walked across the parking lot and got some lunch and then returned. There were only about 15 people still there so we decided to wait it out. We were called back about 30 minutes later and the poor phlebotomist just cringed when she found out it was for the baby. She tried one arm and Kate wiggled and she lost the vein. She got a good stick on the other arm, but lost it quickly too. She was able to dig around and find a vein finally without having to stick her again. We came home and all crashed for naps.

At lunch Thursday, I mentioned to Daddy-O that we hadn't heard anything and I wasn't sure I wanted to call and check on the results. I knew if I called, I would get the nurse who would tell me, "Yeah, they're all negative" or "Yeah, she's got ..." which would prompt me to ask, "Well, what does that mean?" and "What's next?". I knew I would most likely hang up and then call to schedule an appointment to discuss the results with the doctor. So instead of taking my "normal" route, I stayed busy deep cleaning the house. It needed to be done in a bad way and when I get worried or upset my OCD kicks in and can be my best friend.

It wasn't but an hour after our conversation that Dr. H called me with the results. All of the 40 allergies she tested for (everything from roaches to sesame seeds) came back negative. This isn't surprising as allergies typically show up later. However, her immune screen came back showing two deficiencies. There are 5 different antibody types: IGA, IGD, IGE, IGM and IGD. Kate has deficiencies of her IGA and IGG antibodies. I wasn't able to process all of the information I was given clearly and have many questions for the doctor next time we go in. From what I understand, the IGG can cause a child to catch every virus that "floats" through the air. They are very susceptible to infections. The IGA deficiency will cause a child's mucous membranes, especially the respiratory and digestive system, to be very susceptible to infections and viruses. So basically, she will be very susceptible to viruses and when she does catch one, it will most likely hit her "weak" spots. Kids with the deficiencies usually have a harder time kicking a bug or infection once they get it too.

This lines up with Kate's history pretty well. She seemed to be pretty healthy early on, but high levels of both IGA and IGG are passed through the placenta in high doses. These are two of the antibodies that are passed through the placenta and act as a newborn's immune system for a few months after birth. Then it is up to the baby's system to take over producing this. They are also both passed through breast milk. I can't imagine what she would be facing if she weren't such a good nurser. Kate started getting sick often in October of last year (enough time for the placenta benefit to wear off), but things got much worse after a really bad tummy bug on our Disney World trip. I feel like she hasn't been 100% well since. The rest of us didn't get hit nearly as hard as she did. One thing that has been puzzling all along (but "fits" in now) is that fact that she IS able to bounce back from these viruses. The fact that she goes 3-7 days between them means she IS able to get "over" them. There have been several things like this that seem to match up with this diagnosis.

One of the tests they did also checked to see what vaccines Kate's body made antibodies against. Fortunately, all of hers "took". I guess with deficiencies sometimes the body is not be able to accept the vaccine causing the child to have to be re-vaccinated.

While I do still have a lot of questions, I am so glad to know what is going on. I constantly flipped back and forth from thinking that maybe I was crazy to worrying that there was something "big" that we were missing. I felt like I needed to take her in for every little thing, in case it was the "missing clue" to what we were trying to find. While there is not a lot that we can do with this diagnosis, knowing helps. I am the type of person who doesn't weather well with the unknown. Give me knowledge, no matter how bad, and I can handle it, but the unknown, is pure torture for me.

From here our plan is to keep her on the Pulmicort by neb, twice daily to keep her lungs as healthy and protected as we can. This will hopefully prevent viruses from hitting her respiratory system quite so hard in the future and hopefully allow her to bounce back quicker when they do. We have also started her on a daily dose of Probiotics to help her overall gut health. She is also eating a LOT of yogurt these days. This too should help give her digestive system the best support for the down times. While her IGG deficiency should improve some with age and exposure, her IGA will not. We are supposed to use common sense with keeping good hand hygiene, staying away from sick people and will have to really watch our exposure come flu season. I am glad there are at least some small things we can do to improve the situation to help me feel less helpless.

At this point I'm also very torn with what to do about her nursing. I plan to talk to the doctor about this at her well check in a few weeks. She is deficient despite getting IGG and IGA directly from me through the breastmilk. I am not sure what's going to happen when she weans. At this point she will not drink cow's milk. She only drinks water and breastmilk. Despite this, I was almost at the point of weaning early last week, but don't think it's in her best interest now, especially with back to school bugs and flu season approaching. I never thought I would nurse a child past 1 year. At a year I thought not past 18 months. She still enjoys nursing and I do enjoy the bond it brings, but am ready for a little more freedom! I guess we will just wait and see what the good doc says.