Alex's Diagnosis

After 2 very long weeks of anticipation, we finally got the call from Alex's immunologist for us to come in and discuss his lab results. It is really hard to take things lightly when your doctor will only discuss results in person, so we were a little worried what the outcome would be. Sam met me at the immunologist's office Friday morning, only to find that they did not tell us our appointment was at the Frisco office, not the Plano office. We immediately raced across town to Frisco to try and avoid the Frisco office from making us reschedule until after the weekend. There was NO WAY I was waiting 3 more days! When we arrived at their office, it was empty, but our doctor waited for us so we could have our consultation. We were so grateful!

The Diagnosis in Short...

Alex has an immune disorder called Hypogammaglobulinemia. His body, for some reason, is having difficulty producing antibodies to help fight illnesses and infections. His IgG antibodies are critically low and his IgA antibodies are on the very lowest of the normal range as you can get, which explains why he has needed such aggressive measures to help him get better, and why his illnesses have lasted so long. The IgG antibodies make up 60-70% of your immune system, leaving his very weak. We also found out that after having thrush so many times, he has still not developed any immune response to candida(yeast) at all. None! He also has only developed an immune response to 1 of 14 serotypes of the pneumococcal & streptococcus bacterium. He has already had strep twice. The good thing out of his test results was that he does at least have an immune system. Even if it is a weak one, at least it is there.

That leads us to his "cure or fix" for now. Alex will need to start IV infusions every 3 weeks for the next year. These infusions, called IVIG, will infuse his body with the needed antibodies he needs to have a close to normal immune system. We won't have to keep him away from other people or make him stay inside. He will be able to do everything a child does with a healthy immune system. At the end of a year, next summer (since summer is the healthiest time of the year for the average person), they will take Alex off of IVIG for 3 months and then reevaluate his system. If he is able to sustain his levels, he might be good to go. Otherwise, he will probably need the IVIG infusions for life. We are praying very hard that this is not the outcome, but for now we are focusing our energies, also, on getting through the next year.

Sam and I both are still beating our heads over the decision to give Alex IVIG because it is a blood product and comes with its own list of risks. We have also run through the what if's of us not going through with it and having Alex hospitalized or even die of a contracted illness that his body could not fight on its own, yet we didn't give him the help we knew he needed. Neither of us could live with the guilt of that if it were to happen. We know it will be a challenge on all of us, but from everything we have heard, it will also help Alex, and our entire family, out tremendously.

Once everything is finalized with our insurance, Alex will have a pediatric home healthcare nurse come to our home to give him his infusions. They will last several hours, but we have been told he can go about his normal activities at home during the process. He will just have to have his IV bag go with him. Since this is all new to our entire family, I am sure it will come with its fair share of learning curve opportunities. I just hope when all is said and done, we will be grateful for the decision we have made. We love our son so very much, and want nothing but the best for him...especially to be able to live life like all the other healthy kids his age.