We are crazy prepping for Hurricane Irma here in Florida. Having a child with a chronic medical condition has me extra anxious, so we are staying put & hunkering down, so we can be close to our hospital (just in case!) Maddi has been battling an abscessed tooth for the last several weeks that just doesn’t want to heal up with antibiotics. She’s scheduled to have it out on Tuesday, so I hope the hurricane is past us by then. The fact that she has an infection makes me soooo nervous, because with lowered immunity, a simple infection could turn really fast. We are stocked up on meds, water, & food, so we should be ok!
Hurricane aside, the last couple of weeks have just been a little crazy here. As soon as we tapered down Maddi’s steroids from 4 to 3ml, flare symptoms returned. We obviously tried to wait it out to see if it was something else like exhaustion, coming down sick, etc- but, after about a week and half we consulted with Neuro and went back up on the steroids. I hate this part. Steroids are just so hard on her system. They add some extra irritability, make it even harder for her to sleep, amp her appetite up, and cause her to retain so much fluid. Its frustrating that something that is so beneficial to AE patients, can have so many side effects. The longer she’s on steroids, the higher the risk for adrenal dysfunction, growth restriction, weight gain, etc. So, for now we are just taking it one day at a time, watching her symptoms, and trying to wean slowly, yet as fast as we can. It’s a tricky, tricky balance.
We also got some frustrating news regarding her MRI and Sleep Study. Both came back within normal limits, which means we still have no answers for why she has insomnia & restless sleep or a cause for her NMDA. Although Jason and I feel weary at the lack of answers, we feel some relief that she is not seizing in her sleep, which was a real fear. The MRI did not find incidence of a tumor, either. I find this to be the most frustrating and disappointing news. I asked her Nuero where do we go from here?
“Nothing Tricia. We’ve done all we can. Now we wait, and manage her symptoms one day at a time.”
That was a reality check for me. I’ve been really having a tough time since then coping with the fact that we don’t have a “cure.” I know that this is a life-long disease, but there was a small part of my optimistic self that hoped that one day we’d wake up & this would be over, and we could move on with life. Some days, managing all the aspects that come along with AE, can be unbearable. When you’re the parent, there’s really nothing you can do but “button down the hatches,” and push through it. I try to remind myself how hard this must be for Maddi, yet she does it with as much grace as she possibly can. There’s a lesson in that. Hearing our Neuro say they have no idea what’s causing her immune dysfunction and that we would have to find a way to “be ok,” with the fact she will battle this disease for her lifetime, going on and off steroids & chemo, has been really sobering… like, But, how? How do I learn to be ok with that? We have no idea if she’ll relapse again. No idea what triggered this. We are exhausted. Maddi is exhausted. We’ve gotten used to having no answers over the last year, but the unknowns for the long term are always hard to grapple with.
Amoungst all the bad news, we did get some good news this week! Our insurance company stopped acting crazy and FINALLY approved outpatient IVIG. What does this mean?? NO MORE MONTHLY HOSPITAL STAYS! WHOO HOOO! Maddi will now get her IVIG in the infusion center over 8 hours, rather inpatient over 16. We are so excited! Even though Jason and I became machines about “infusion weekends,” it’s such a great feeling to know we won’t have to be separated as a family anymore! We also go word that our insurance company approved one of the appeals for her IVIG treatment from the beginning of the year! Whoop! $6000 has been taken off of our owed balance, and we will now only have to pay a small fraction of that monthly. Such a relief! Battling with insurance has been one of the most annoying aspects of this disease. Treatment for AE is so expensive, but without it, Maddi would relapse. I’m thankful that my husband works for the hospital Maddi is treated from, and payment plans. I’m soooo thankful for payment plans lol (even if that means we’ll be paying well into college haha!)
Thank you for continuing to follow Maddi’s story & updates about our family. Continue to keep her in your prayers.
*Why the Zebra?*
“When you hear hoof beats, think horses, not zebras” This phrase is taught to medical students throughout their training. In medicine, the term “zebra” is used in reference to a rare disease. Doctors are taught to assume the most simplest explanation is usually the best, and as a result, sometimes forget that that zebras exist. Getting a diagnosis or treatment can be very difficult for people with rare diseases.”
Pictures created and owned by the International Autoimmune Encephalitis Society