Caden was diagnosed on Tuesday with an immune deficiency similar to the one that his sister has. This diagnosis isn’t a surprise; it comes after years of blood testing, specialty appointments and infections that weren’t typical in terms of type or frequency. In many ways the diagnosis is simply a label that allows us to move forward with treatment for a condition we have been trying to deal with for years now. Although there are a number of different types of immune deficiencies most are characterized by a suppressed immune system that renders an individual unable to fight illness. As one would imagine, with the immune system being contained primarily in the bloodstream, any and all areas of the body are vulnerable to infections that are often difficult to treat. Additionally vaccines are often ineffective because without a properly functioning immune system the body is unable to remember (i.e. produce titers) the diseases that it is exposed to. Complications are the norm as are co-existing conditions; although there are treatments to date no cure exists.
I can’t speak for everyone with an immune deficiency any more than I can for everyone with autism but based on Ryley’s experiences I think I can fairly safely state that immune deficiencies stink. She has been in the hospital more times than I can count, has had 13 surgeries with another one scheduled tentatively for June, has spent a great deal of her life in isolation, has had to complete school 2 years virtually due to illness, and has been disappointed by missed birthday parties, end-of-year celebrations, and just plain life fun more than I want to relive at the moment. She has had tests and procedures most adults will never hear of, let alone experience but through it all she has been a rock star.
Ryley has always been mature when it comes to the medical arena. She has not always liked what she has had to endure but with discussion and appropriate bribery she has been able to tolerate almost everything the medical community has put her through. Not going to lie here---between the ages of 1 and 3 I think we personally kept the Nationwide Children’s Hospital giftshop balloon department in business BUT she could focus on the prize and get through the procedures.
Autism is throwing wrenches in this diagnosis in ways that I could have never imagined. Caden will start his first immunoglobulin (human plasma) replacement infusion tomorrow alongside his sister. He has been awake since 3am worried, anxious, and scared over the needles that tomorrow will bring. No amount of discussion, redirection, or offer of bribery has swayed him. I have spent hours today trying to explain why he has to have “the needle” as well as rocking him while he has had unlimited access to blankie and pacifier---this is traumatizing stuff, the chewy is okay but we needed the big guns today. He has cried and begged and cried some more and I can honestly say my heart is totally broken.
Other autism and sensory processing disorder challenges will include keeping an IV in for 6-8 hours, vitals being checked every 15 minutes the first hour and then hourly after that which means being touched a lot, hospital noises, changes in routine, hospital food and maybe most worrisome the inability to articulate side effects or complications as they arise (something I’ve been immensely grateful that Ryley has always been able to do).
I know we’ll get through this tomorrow. Starting the IV will be rough but we are hoping with his big sis going first it’ll smooth the way a bit. The hospital staff knows us so they’ll work with us. We know how to pack for the hospital and my husband is out positive reinforcement (i.e. bribery) shopping as I type. Of course our super service dog Elf will be there with us every step of the way. Hopefully the infusions go smoothly or as smoothly as possible for both of them since infusions are necessary every 3-4 weeks for life. (Side effects are common; immediate reactions can include anaphylaxis, sore throat, chest pain, fever, vomiting, or rash while reactions occurring 24-48 hours later include fatigue, flu-like symptoms, meningitis, severe headaches/migraines, and vomiting to name a few. Premedications can include steroids, antihistamines, pain meds, and nausea meds as well as controlling the infusion rate—all of this is a guessing game though and we just figured out the combo for Ryley last month after several years of infusions.)
But getting through this is going to stink. I can only hope Caden’s fears don’t cause anxiety for Ryley and that the nurses don’t transfer Ryley’s acceptance and understanding to Caden. I can only hope that these infusion experiences don’t create another reason for Caden not to be able to sleep or another medical fear that he has to live with. Research has indicated that immunoglobulin infusions can have a positive impact on autism so that’s something that I will be hoping for as well improved health. I think though for now what I will be most hoping for is that somehow Caden can know in his heart that my heart is breaking with and for him and that more than anything I love him and wish I could take this pain and fear away from him.