Last summer, I thought I would start blogging, like many moms do. I thought the subjects would be what I'm cooking (I'm a pretty decent cook, I think) and how I manage my busy life as a working mom of a 2 - one who plays travel baseball and a preschooler, both rowdy boys. However, I think it may become my way of updating family and friends on a challenge our family is facing, and also reach out to others who are facing a similar challenge. It may also become a little outlet (therapy) for me. I'm a true believer that we all need a little therapy in our lives.
If you are a family member or close friend who knows all about our situation, scroll down to the bottom. If not, please start reading here, and think about whether you may know someone in a similar situation or have a connection in the medical community who might be able to help us.
This is my 8-year-old son, Shawn.....
He is a typical boy who LOVES baseball. When I say he loves it, I mean he eats, sleeps, breathes baseball. He never really played with toys as a small child because he played baseball outside and inside all the time. I have very few pretty little breakables sitting around my house. When he's not playing baseball with an actual ball and glove, he's playing MLB 20whatever on Playstation or XBox. He's really fast too, often flying around the bases to score in-the-park homeruns more than once in a game. I don't say that to brag (ok, maybe a little), but to present a true picture of his physical abilities.
Those who don't know his situation and history would never believe he struggles daily with health issues. I say "issues" because we don't have a specific diagnosis. At this point, he is being treated for an unspecified Primary Immune Deficiency. Our doctors are not even sure that is correct so we have an appointment scheduled in a few weeks at the Infectious Disease Clinic at Vanderbilt Children's Hospital. I need to take a second to say that we have the BEST doctors - from his pediatrians (all 3 of them working together on his case) to his immunologist to his pulmonologist. If I ever sound frustrated, it's with the situation, not the doctors. I do believe they are doing everything they can for him.
What began as "typical" childhood asthma has morphed into something so much more complex and scary than I could have ever imagined. He has spent the past year and a half on and off of strong antibotics (Augmentin and Omnicef) and both oral and inhaled steroids. He has actually been taking Augmentin daily now since May. He used to be able to go a few weeks without an antibiotic before getting sick, but this last time, it was 4 days. Getting sick for him means true bacterial pneumonia - sudden onset of high fever (105 degrees - no, that is not an exaggeration). These past couple of times, the pneumonia was so impacted in an area of his lung that he wasn't moving air much air through that area so he wasn't even coughing. How do you have pneumonia with NO COUGHING???? The worst part is that we let him play a double header that day, and ended up in the ER that night because we didn't know he was sick. He had just completed a long stint of Augmentin, so why would we think he would get sick so fast? Of course that truth doesn't hold the "mother's guilt" at bay.
In June, his pulmonologist discovered he has bronchiectasis in both lungs. What is bronchiectasis? Basically, it's permanent damage to the airways that causes them to widen and become flabby and scarred. This is caused by too many lung infections. Of course, I went home and googled it and became completely freaked out. His damage is minor at this point, so we have to work hard to keep it from getting worse. How do we do that? Prevent further infections - of which we still don't know the root cause. Which is the reason he is on Augmentin indefinitely. He also began twice-daily airway clearance treatments often prescribed to patients with Cystic Fibrosis. Scary, I know. As a mother, you never want to hear that your child has permanent damage to any part of his body, let alone a vital organ.
FRIENDS AND FAMILY, start reading here...
This is where we are today:
This week, Shawn completed his second Subcutaneous Immunoglobulin Therapy Treatment (SCIG, or as I refer to it - his Ig treatments). Immunoglobulin refers to the fraction of blood plasma that contains antibodies - which our bodies produce to fight off infection. Most people with Primary Immune Deficiencies don't produce enough antibodies, a fact which shows up on blood tests. Shawn's bloodwork shows that his body does produce enough antibodies. His immunologist thinks they are not working - sort of like having a "dumb army." Once he has had several treatments, we are going to take him off of Augmentin for awhile and see if he gets sick.
Ig Treatments - Ig is prepared from the blood plasma donations of thousands of generous people (THANK YOU!). We basically insert 2 short needles into his fatty tissue (ex - thighs or stomach). The serum is then slowly pumped into his body over the course of an hour. The Ig given only provides temporary protection, so these treatments must be administered weekly.
This sounds like a lot for an 8-year-old to handle, but I'm so proud to say that Shawn handles it like a champ. His attitude has amazed me! However, I'm having to work on mine as the insurance company has denied coverage of these treatments. I'm hold a Master's degree, and am currently working on my Ed.S., and I find myself completely baffled by this whole process. What I thought was approval for coverage was actually approval for us to receive donated treatements for 4 weeks. Our denial letter arrived this week. Denial based upon the bloodwork not showing insufficient levels of antibodies, and then they stated - "no evidence of subsequent infections requiring prolonged use of antibiotics." REALLY????
Of course, I immediately called the insurance company and demanded to speak to the person(s) who made this decision. This poor lady on the other end of the call told me that wasn't possible, so unfortunately, she had to listen to my story and outrage, and I think I made her cry. Do I apologize for that? Absolutely not. I think I forgot to mention that these treatments cost about $2000 each month, and if they work, he will do them indefinitely. We are beginning a long appeals process, and mark my words. I will get a meeting with somebody. If they are going to deny coverage for the ONLY appropriate treatment the doctors can think of at this point, they are going to have to explain their reasoning in person. In the meantime, we know we have medicine donated for next month, but will have to pay for the medical supplies (tubing, needles, etc..). Those aren't cheap, but they are drastically less than $2000.
Here's what we are asking of our family and friends:
1. Please pray for a specific diagnosis and treatment plan, mercy from the insurance company, and wisdom for his doctors. Shawn will also have sinus surgery and an airway biopsy on Thursday (8/14).
2. Pass this along to anyone you know who might be in a similar situation - It's difficult to explain, but having a child who appears so healthy, but is going through so much is hard. Sometimes I think people think we exaggerate and are overprotective - I probably would too if I was "on the outside looking in." It would be so comforting to speak with parents who are in a similar situation.
3. Pass this along to anyone you know who may be able to help us navigate this insurance appeals process. We do have a patient advocate and a nurse who are helping, and they are great.
4. Pray for me - I am not used to being in a situation in which I have no answers and cannot fix. I guess I'm admitting to having control issues. My husband will be proud. Shawn's health is on my mind constantly. It's hard to find balance among all of the other important blessings in my life: my husband, our fiesty 3-year-old, my career as a literacy coach, and grad school.
Resources for families who need more information about PID:
