Gavin has yet another antibody infusion this morning. The reason I say yet another is simply because I lost count of where we are.
Anyway, he goes this morning, with Lizze to Akron Children’s Hospital. The infusion takes a few hours and than he will be home once again. It think this may be his 14th or 15th monthly infusion.
For those new to my blog, Gavin suffers from primary immunodeficiency. The antibodies he receives every month via infusion, replace his missing immune system. Gavin’s natural antibody levels are less than half of what they should be. Not only that, but what he does produce is defective, meaning they don’t work.
Every month he receives donor antibodies via IV infusion. He does really well and his body tolerates the foreign antibodies without much problem.
We discovered the immunodeficiency on accident last year. We don’t know for sure whether this is a new system of Gavin continuing health decline or if he was born this way. The immunologist seems to think that he was probably born this way. However, if that’s the case than it’s truly a miracle that Gavin has survived 12 years with no immune system. He has never being seriously ill or hospitalized for an illness that should have been fought off by his immune system.
No one can explain that…..
Either way, we are addressing the issue and he will continue to receive these infusions every month for the rest of his life.
Our little boy, Oliver also has Primary Immune Deficiency that we discovered at the beginning of this year by accident. Also, like Gavin we don't know if he has always had it, but that is likely the case given the number of illnesses and serious infections he has had in his short 8 yrs thus far.
We did start with IVIG treatments but both times had absolutely horrible, intolerable side effects and have just last week switched to Subcutaneous IG weekly…with the only side effects of bruising at the sites.
Oliver was already a Homebound student for School Services and School based Therapies due to his many other existing Medical complexities…but now we are even more strict and diligent about visitors, health safeguards, public facility exposure on a need only basis, etc.
Immune issues can really be a life changer and for our little guy, having so many other medical issues and conditions, Primary Immune Deficiency was yet another level of the serious life altering experience that is Oliver!
My son has selective immune deficiency, meaning he has some antibodies but not all. We get to do his infusions at home subcutaneously, in the fat, not the vein. He watches a movie with pizza and pop every Friday but can carry his pump in a little fanny pack if we need to go somewhere. This method keeps his levels even all the time. Is this not an option for you? We used to take VivaGloben which changed to Hizentra, but he didn't tolerate Hizentra (always tired) so we switched to GlobulanC. What does Gavin use?
Gavin could have the pump at home, however, he really doesn\’t do well with needles and once a month has worked out well. He would need the pump once or twice a week if we did this at home.
So every month he goes and gets IVIG infused. It used to take 4 or 5 hours but since he tolerates it well, they can speed up the drip. Now it takes about 3 hours..