getting the IVIG phone call
Orders were put in about three weeks ago for IVIG. Peter and I have still been contemplating and weighing all of the option outlined for us by our doctor, so I actually wasn't rushing the scheduling phone call.
But this week, the infusion center called and they have Hunter's name on the schedule for September 23rd through September 26th.
Four days, 4-5 hours each day, for three months, pumping his body with new blood that will hopefully bring our son back. IVIG has been shown to be helpful with the harmful inflammation caused by autoimmune illnesses but the exact causative actions are not clear yet. Donor antibodies may “retrain” the abnormal antibodies in the patient or the large amounts administered may simply overwhelm the harmful antibodies – thereby removing them from the PANDAS patient (PANDAS network).
Basically, we are going to reboot his system.
And we are trying so hard to be positive, to be faithful, to be present in the fact that the moment we have navigated for over the past three years is here.
But we are undeniably scared.
Any time you are given medical options for your child, you weigh the pros and cons and make an informed decision.
We have done the leg work, we have run all the tests, we have completed the required blind trial...and it has been proven that suppressing the antibody production does in fact work.
So why does it feel like we are making a decision based on gut instinct?
We go back to our life pre-PANDAS, pre-Autism, pre-Autoimmune disorder when we envisioned the life we were building and the naïve nature of parenting--we were living the dream.
And in a week, we hope to wake up from the nightmarish change that has overtaken essentially every aspect of our lives and has challenged us to undoubtedly believe in our hearts, our perseverance, and above all us, our faith in Hunter, in each other, and in God.
So we did get the call, and we answered. And every sign is pointing in the right direction...
Looking forward to talking with Dr. G tomorrow, who is calling us to review our questions and give us the answers we have been looking for.
Help me find it once again, Dr. G.
But this week, the infusion center called and they have Hunter's name on the schedule for September 23rd through September 26th.
Four days, 4-5 hours each day, for three months, pumping his body with new blood that will hopefully bring our son back. IVIG has been shown to be helpful with the harmful inflammation caused by autoimmune illnesses but the exact causative actions are not clear yet. Donor antibodies may “retrain” the abnormal antibodies in the patient or the large amounts administered may simply overwhelm the harmful antibodies – thereby removing them from the PANDAS patient (PANDAS network).
Basically, we are going to reboot his system.
And we are trying so hard to be positive, to be faithful, to be present in the fact that the moment we have navigated for over the past three years is here.
But we are undeniably scared.
Any time you are given medical options for your child, you weigh the pros and cons and make an informed decision.
We have done the leg work, we have run all the tests, we have completed the required blind trial...and it has been proven that suppressing the antibody production does in fact work.
So why does it feel like we are making a decision based on gut instinct?
We go back to our life pre-PANDAS, pre-Autism, pre-Autoimmune disorder when we envisioned the life we were building and the naïve nature of parenting--we were living the dream.
And in a week, we hope to wake up from the nightmarish change that has overtaken essentially every aspect of our lives and has challenged us to undoubtedly believe in our hearts, our perseverance, and above all us, our faith in Hunter, in each other, and in God.
So we did get the call, and we answered. And every sign is pointing in the right direction...
Looking forward to talking with Dr. G tomorrow, who is calling us to review our questions and give us the answers we have been looking for.
Help me find it once again, Dr. G.
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