4 week post diagnosis update

I can’t believe it’s been 4 weeks since Maddi’s official diagnosis of NMDAR Autoimmune Encephalitis. When we first started this journey for a diagnosis about 8 weeks ago, Maddi’s starting NMDAR AB Serum titers were 1:5120. Now remember, normal is 1:10. Hers were the highest our particular hospital had ever seen, and is the reason the entire Neurology team concurs that Maddi’s disease started back in November 2015; the symptoms were just much more mild and easily explained off as other things. After her first round of treatment (2 doses of IVIG and a 5 day steroid pulse) her titers dropped to 1:640. When we were admitted last Monday, titers were drawn once again. After the first treatment, and continued steroid therapy at home, her titers dropped to 1:160!!! Such a huge difference! This means she is moving towards remission!

For those who are just finding this blog, and reading about NMDAR Autoimmune Encephalitis for the first time, let me give you the abridged version.

NMDAR Autoimmune Encephalitis, or N-methyl-D-aspartate receptor AE is caused when the body’s immune system is triggered to begin creating anti-NMDA antibodies that then adhere to the NMDA receptors on the brain, preventing the brain from firing off the electrical pulses needed to function. This defect prevents the brain from performing properly, and can lead to a whole host of problems. For Maddi, her NMDAR AE presented as radical behavior and personality changes, aggression, anorexia, insomnia, seizures, short term memory loss, and slowed cognitive processing.

When we brought our baby in 4 weeks ago, we were hopeful that treatment would stop the progression of the disease, and return our happy, healthy, 5 year old back to us. At first, it seemed as if treatment was working, but Maddi started to have a decline in behavior after the first week, in which the doctors scheduled the second line treatment using Rituximab. The weekend before our admission, Maddi had a partial seizure, and it was evident that the disease was still at work.

It’s been a week since her Rituximab, and I’m so happy to say that Maddi is doing very well! We have had zero aggressive incidents in about 10 days. She’s gaining back her energy a little more every day, and is starting to do things that she used to enjoy before, like swim, run, cart wheels, and playing with her dolls. 4 weeks ago, Maddi would do nothing but lay on the couch and stare at the TV.

Lately her appetite is insane, but that’s because of the steroids and risperdal, so we expected this. Some days its a battle to keep her from eating everything, but she’s doing better with every passing day.

Maddi’s cognitive functioning has improved some, but she still struggles with processing simple questions, and short term memory! She’s been taking liquid B12 daily, and I encourage her to do creative things like color and draw. She’s also been hyper focused on building puzzles again, so I’m not too worried about this area. I know that it will take time for her brain to heal, and then she should recovery any cognitive function she’s lost.

Recently, this past weekend, Maddi was able to participate in her ballet recital. This was such a bittersweet moment for Jason and I. Neither of us could hold back our tears as she danced around the stage. There was a point in time that I didn’t know if Maddi would ever regain these parts of her personality.

 

The changes Maddi are showing are very encouraging. They are renewing my hope, and making me feel like a complete recovery is going to be possible for her.

I just want to tell all parents, never give up fighting for your kid. Never let a doctor, teacher, etc tell you what’s up with your kid. You are their advocate. You have to fight for them. Don’t be afraid to question doctors. Don’t be afraid to step on their toes. Don’t be afraid to say No, and don’t be afraid to say yes. Don’t ever give up, even if no one believes you. Trust me, there is someone who will.

I truly believe in my heart, had I not advocated for Maddi, we probably would not be where we are now.This is the purpose of sharing Maddi’s story, and my experience of parenting her through this. I want you to know, you are not alone. I get how you feel. I agree, this disease plain sucks. I want to give you the comfort and reassurance that the Doctors can’t give as you go through similar treatments. I want you to have a familiar story that you can relate to. I want to share the rainbow of feelings that comes along with loving someone with this horrible illness, and what to do with them.

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