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Monday, June 5, 2017

Immune Deficiency Update

Just in case you didn't know, or didn't remember, Korban was diagnosed with a primary immune deficiency back when he was 4. He had been sick SO much and we'd had some pretty good scares. When the results of his bloodwork came in identifying the immune deficiency, his pediatric immunologist at Blair Batson in Jackson was on extended medical leave, so his pediatrician referred us to Children's of Alabama in Birmingham (at UAB). 

We saw his immunologist there for the first time when he was 4. She's always been great to us. She started off treating him with less evasive treatments such as prophalactic antibiotics but it didn't work and he was still sick a lot, so we moved on to the IViG. Every four weeks we would drive to Birmingham (about a three hour drive from our house) to get him hooked up to an IV so he could get an infusion of blood products that had the immunoglobulins that his body wasn't producing in it. This took several hours and getting an IV in him wasn't fun, but he was finally healthy so it was definitely worth it. 

We did IViG (intravenous immunoglobulin) infusions in Birmingham from the time he was 4 until he was almost 10. We started having trouble getting our insurance to cover the out of state treatments, even though Blair Batson in Mississippi is even further from our house (over 4 hours). Korban's immunologist at UAB told us about a research study that Korban could participate in and we opted to do it. It was SCiG (subcutaneous immunoglobulin) so his treatment went in through three little sites on his belly instead of through a vein. Brad and I were trained and did it three weeks out of the month at home and went for a checkup at UAB the fourth week. 

We've been in the study for about a year and a half and Korban has tolerated it very well. It's much easier than getting the IV's and his levels have been wonderful. We thought the study was going to be extended and we would only go to UAB every few months for checkups but unfortunately we found out a few weeks ago that the study was ending abruptly. Once the meds we had ran out, there would be no more. We had two more doses in our fridge when I got the call saying the study had ended. 

It wouldn't have been such a big deal but UAB no longer accepts Korban's insurance (MS Medicaid through SSI) so our people in Birmingham were scrambling to get us in somewhere that could help us. They referred us back to Blair Batson, so we've basically come full circle. Batson initially said they couldn't get us in until August, which panicked me because that is a long time to be without a medicine he needs to take every week to stay healthy. 

So then his dr and nurses sent a referral to home health to see if they could start seeing us and shipping Korban's meds to us. Still waiting to see if his insurance will approve that. In the meantime, Brad called Batson Friday and they told him they could get us in Tuesday at 7:45. So we are driving down tonight to stay in a hotel so we can be there for that apt first by tomorrow morning. We don't even know for sure which dr we will be seeing, they told us it would be whichever immunologist is on call, but we don't care. We are just thankful they could work us in. 

Korban however, doesn't understand why we can't keep going to UAB like we've been doing every month for the past 7 years or why he didn't get his treatment this past Friday. As you can imagine, we've gotten pretty close to the people at UAB, especially the ones doing the research study. They worked so hard to earn Korban's trust, which isn't an easy thing to do, and he loved them. We all did! I know Batson has good people, but change is HARD, especially with autism. When Brad took Korban for his final visit at UAB last Friday, he wouldn't even tell them good-bye. He didn't accept or understand that he wouldn't see them again. 

We aren't sure if this dr will want to continue the SCiG or try him off of it and see how he holds up. It's scary for us because he only missed one month during his time on IViG and it was because we couldn't get the insurance approval. That was a rough month. He didn't feel well and was super ill because of that. His levels had started dropping so they said then it didn't look like he was outgrowing his immune deficiency. (That is possible. The only way to know is to stop treatment and see if he gets sick.) We have mixed feelings about that. We hate seeing him sick and we know what happened last time he missed a dose. But we don't want him to be on any medicine he doesn't have to be on. There's also the third (scariest) option, and that's that he still needs the medicine but we aren't able to get it because of insurance. It's crazy to me--if at any point
in this whole journey with his immune deficiency we had said "You know what? It's just too much. We aren't going to drive all this way and hold him down for an IV. Bye bye now," they would've likely reported us for medical neglect, and rightfully so. But if insurance decides they don't want to pay for his meds, boom, that's it, you have a sick kid and that's that. I'm not complaining or asking for pity--I'm just telling our story. There are a lot of families in much worse shape than us. I know because I've been in plenty of dr's and hospitals and I've seen them. But it bothers me when insurance companies either can't or won't take care
of people and then I scroll through Facebook and my friends are ranting about all these families getting a free ride on government programs. I left my job to come home and take care of my child with special needs, my husband has a master's degree and works hard and we pay taxes like everybody else. I'm not going to argue on Facebook or anywhere else but sometimes I think people forget they are talking about real families, real people, and they don't understand the full scope of their situation. I know there are people that abuse things, but there are so many that don't. 



Here's my real little person and we are going to do whatever we need to take care of him. Please pray for safe travels for us and a good outcome to our dr visit in the morning, whatever that may be. 

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