We have had many good days to celebrate and we do! We celebrate every tiny victory. The majority of Ellie’s OCD is gone. The obsession with food gone. Her witty personality and humor is back. Academically she is almost completely on track. She is making all A’s in our homeschool program. The flares are less. The hugs are more.
There are beautiful days. The days where the sun is shining and there are a lot of smiles and lots of laughter. Where she is independent and able to tackle the tasks for the day. These days are just amazing. But then, the very next day, while still floating on cloud 9, the rug gets pulled out from under us and it seems we are back in the center of pandas hell flaring. Days where I have to lock myself inside my closet and cry because I physically don’t know how much more I can bear. Days where I can’t brush my teeth or remember the last time I showered. Days where we could have possibly been wearing the same clothes for 3 or 4 days in a row. My heart aches when I see her unable to control her own emotions and actions. It not only terrifies everyone in the house but it terrifies her.
I’ve been asked since we still have these flares, does that mean the IVIG treatment didn’t work? The answer to that is no, it doesn’t mean that at all actually. There are several outcomes you can have with this treatment. 1. It won’t work at all. 2. It works immediately and you see almost instant gratification and 3. It gets worse before it gets better and takes anywhere from 4-6 months for the full results to be seen. We are somewhere between outcome number two and three. Ellie immediately responded to the IvIg treatment in a positive manner. I think a lot of it had to do with the solumedrol (steroid) in conjunction with the treatment. She got very sick several days later (which strangely is a good sign). Then we started crashing about two weeks later. It got bad. Then I started noticing some habits had disappeared. The separation anxiety wasn’t paralyzing. The doctor told us it was similar to a ladder. The behaviors that started first are the last to go as you climb back down that ladder and the ones that were newer leave quicker. We have had some scary flares. Flares that were even worse than before. Flares where the police was almost called and emergency calls had to be made to the doctors. This is scary scary crap.
The unpredictability of each day and the stress of it all has put my own depression in a full tailspin. It has left me getting debilitating migraines weekly for the past seven weeks. But I am thankful the flares are fewer and farther between. We take things day by day and truly hour by hour. I never know what each day will hold as I rise up in the morning, but I do know that God knows. God prepared us for this battle and each day when I get up, I pray to Him, to give me that strength I need to make it through the day. I pray that He will fully and completely heal my child in every way. Every day, this is my prayer and I know in His time, it will happen. Isaiah 60:22 ‘When the time is right, I the Lord, will make it happen.’ There are many lessons on empathy, patience, anger, trust, control and faith that God is teaching me through this journey. There is always purpose in pain and I know that I am learning valuable lessons in this process. So for now, we roll with the punches (sometimes very literally) in the stride of two steps forward and one step back.