labs back

ok. So labs are back, and it still sucks. It could be worse, I guess.

Bryson's Immunoglobulins are improving, which is awesome to see, but they are just up and down. Right now everything that was up before, is down and what was down is up. Weird. He has no response to his Prevnar vaccine (AGAIN) that is the one that protects for pneumonia and meningitis. We are going to give him a pneumonia vaccine in January (when he's two) and see what that does, but my hopes aren't up. He had to get two boosters of Prevnar last year until he responded. Dr. Knutsen said that is pretty typical of people with hypogammaglobulinemia to have these rejections. His T-Cell and B-Cell function was all still pretty low, but up a bit. I know its awesome that things are coming up, I just want it to be OVER and I thought it would be.

The PLAN: back on antibiotics all winter, once a day. No more Mom's Day Out (bummer) which really sucks because he was JUST starting to adjust to being there. He started going in September and has been sick at least three times since then, so I guess that means NO MORE. Repeat labs in March. We still don't know for sure if this is something he's going to outgrow or not. He's thinking that the HI (hypogammaglobulinemia) will be something that will be outgrown, but we just aren't sure what's going to happen with his T-Cell stuff. I talked to our pediatrician about the T-Cell stuff and treatment for it is pretty aggressive, if needed. Hopefully they keep improving!

Last year he told me over and over that these kids aren't usually symptomatic until they are closer to two, and that's where we are at now. So we just hope that we have as good a winter as we did last year! Stay away flu bug! You are not welcome at our house! Bryson is doing well, its so hard to believe that this perfect little boy can have such crazy labs. Brian and I look at it as the labs are just numbers on a piece of paper, the important thing is that Bryson has done really really well, way better than they expected with all of this. So we move forward, like we always do, and pray that God keeps him healthy!

Thanks for reading, sorry I didn't update sooner. I was just trying to piece it all together myself!



That's all for now. I know it could be much worse, so we are thankful.

Long time No post! Immunology take 2

Wow...its been a loooong time since I have posted! Sorry to any faithful readers out there!

We had our appointment at Cardinal Glennon with Immunology last week. It went ok. I kind of felt down after the meeting though because its just not what I was expecting to hear. I thought that we would be wrapping all this stuff up and that's just not the case. Basically what he said was that he wanted to repeat all his labs from last fall again (which is sooooo much lab work!) He wants to check his T-Cell function and B-Cell function again. I was under the impression that if we started to see the immunoglobulins (From here out I will call them Ig's) coming up that the rest would follow, apparently that's not the case. He said that he is not as thrilled as I was with his Ig increase. That they are still all low. He is happy to see them coming up on their own, but he is concerned about the T-cell function too. So basically we just hurry up, get the labs drawn, and wait which we have become professionals at by this point!

We talked about how Bryson gets when he does get sick. He gets crazy high fevers (above 104) and always always breaks out in a rash the last few days of fevers. When telling him this he said "kind of like Parvo?" I was like, "well, I guess its like parvo, but the rash doesn't look like a parvo rash." He then went on to inform me that there is a form of chronic parvo. This I could have gone the REST of my life without knowing. I hate that stupid stupid virus. He said he doesn't think this is what he has, but we will have to watch him. It sounds like Bryson has more susceptibility to getting sick with virus' instead of bacterial infections. This makes sense because if his T-Cell function is off that is what mediates a viral response. If that makes sense to you!

So from here we just wait and hope that we continue to see his numbers increase and that everything is falling into place. He reminded me that last year he told me that usually kids with Immune Deficiencies don't usually become symptomatic until they are closer to two, so if Bryson's numbers aren't up then this could be a ugly winter at the Eisel house :(

"What do we call him?" I asked, wondering what his diagnosis is.

"Combined Immune Deficiency" is the answer I got. Because apparently he has two separate issues going on with his immune system. His Ig's are low and his T-Cell function is decreased. How do we take care of this all? Hopefully he outgrows it, these labs should be pretty determinate if we are going to outgrow it all or not. If stuff is still low, we have a few options, but not many and none of them sound good to me.

Keep those prayers coming! We have been so blessed in the past and hope that they keep coming our way.

Sorry so long! I will post when we have labs next week sometime! Thanks!