Immuno-perfect!

Oliver and daddy enjoying the sunshine...the mask was mostly for pollen, but my cousin April exposed me to the totobobo mask that is so popular where they live in China due to pollution.  We are ordering one for him to wear during flu season for necessary doctor's visits.  

Preventative Measures

Currently, the only means of treating an auto-immune disease is to purposely shut off the immune-response that is creating the havoc.  In Oliver's case, OMS was creating elevated B-cells which were causing inflammation in his brain and the symptoms that caused us to seek treatment in the first place.  Unfortunately, medical science has yet to figure out how to target one specific immune response and thus the reality is that we suppress nearly all of his bodies' natural ability to fight infection- even a common cold.  To top it off,  relapses are almost always tied to an accelerated immune response due to infection (even a common cold). (we have faith that Oliver will never experience a relapse, but know that there are things we can do to give him the best circumstances)

In Oliver's case, the treatment is a bit extreme from the get-go as Dr P has seen better outcomes (less chance of relapse, less significant long-term effects) when they go in "guns blazing" rather than trying to take the least drastic course of action.  Of course, this approach was diametrically (oooo, I spelled that right the first time, AND I'm pretty sure I used it correctly, too) opposed to our normal approach.  We generally seek the least invasive, most natural course of action.  However, when you watch your child lose every ability he ever had in the space of 2 weeks, you are more willing to listen to the alternatives.  In this case, we were not fearful, but full of faith that Oliver was already healed and his symptoms were just catching up.  We decided to commit to Dr P's protocol as well.

Oliver is on 3 different immune suppressants: IVIg, Rituxan (classified as a chemo-agent) and high dose steroids (ACTH).  All 3 are given to transplant patients after they receive an organ to suppress the immune response to the foreign organ...this gives you an idea of what we are up against in protecting Oliver from infection.  Since these drugs are designed to "shut-off" the immune response, he cannot be exposed to infection at this stage at all.  A common cold could result in a hospital stay.  Thus, we are all hyper-aware of everything we do.  Hand sanitizer bottles are stashed all over the house, shoes stay outside, we all change as soon as we get home from being out, we don't kiss Oliver on the mouth, and the list goes on.  Additionally, Oliver does not go out in public unless he is going to a doctor's appointment.  We work hard to be sure that he has the first appointment of the day or the first one after lunch so that there aren't any other kids around.  His hands are sanitized frequently while we are out.  He has very limited visitors at the house, only essential people.  Taylor and I limit our contact with other adults, especially those who are around children, as much as possible.  Unfortunately, I still have to work, so I have some exposure there.  It will be a minimum of 6 months, but more likely a year before Oliver's system can handle the risk of being exposed to illness.  

Another consideration is the risk from exposure to people/pets who have been vaccinated.  He cannot be around someone who has received a vaccination for a minimum of 3 weeks, as these are known to cause relapse and exacerbation of symptoms if the disease is not in full-remission.  We had considered having someone help out a few hours at a time, a couple of times a week just so Taylor could plan for necessary errands...but these caveats of keeping Oliver safe eliminate nearly every one interested in providing childcare since we did not need someone full-time.  

Basically, please do not be offended if we decline an offer to spend time with you over the next year.  We are not looking forward to it, but again, willing to do whatever it takes to give Oliver the best conditions to continue demonstrating his full recovery.

In addition to avoidance measures, we also began to employ other preventative measures.  The doctor prescribed a prophylactic antibiotic 3 days a week and we decided on Intestiflora (probiotics), liquid vitamin D, tons of fruits and veggies (nearly all of them in pouch form, but it's a start), Nutrilite Kids Daily Multi, Nutrilite Fruits and Veggies 2 Go and Green Goodness, 12 hours of sleep at night (no, he doesn't do it because we tell him it's good for him...he takes Trazadone to help him get restorative sleep), 1-3 hour long naps, and running around outside every day (my friend Kara suggested 20 min/day shirtless for the natural vitamin D and Ollie does not object:)

Taylor and I often talk about where we will take Oliver to celebrate once the doctor "declares" what we already know- that Oliver is healed, healthy, whole and ready to venture out in the world.  We'll share once we've decided....which probably won't be until it is almost time to do it.  We keep coming up with different ideas!