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July-10-2019 | Kayla Demay

After watching your child endure Autoimmune Encephalitis in the hospital, anyone would be grateful when the end is in sight and they’re bringing their little one home. It seems like the end of a chapter you’d never want to read again but really, it’s just the prologue to a new novel; Life After.

Aside from the doctor’s notes, the medications, occupational, speech and physical therapist visits, nurse visits and appointments; just living, just home life in general has changed. You are grieving the loss of your child’s personality and they are struggling tooth and nail to regain what they’ve lost. There’s lots of coping strategies I’ve found along this journey with my child. I’d like to share them because it was excruciating to figure out, and I’d love to spare you and your children more pain.

  • They’re seeing their world through new eyes, and it’s very scary and overwhelming. Limit outside company and time spent away from home for the first couple weeks.
  • Make a very repetitive and simple schedule through those first weeks and stick to it religiously. They may have trouble understanding the passage of time and what has/hasn’t happened. When everything happens at the same time every day, it creates a rhythm that will help them through this. Explain what has happened and what will happen at what times over and over when they ask.
  • Use blankets to cover the windows in their bedroom. Even kids that were originally afraid of the dark can find the light to be too much, and they find comfort in the dark cocooning of their room. Darkness naturally helps regulate their sleep too. Let them surround themselves with things they like, things that make them feel safe. Weighted blankets are very good for feeling safe as well.
  • Pay attention to the signs of your child’s fatigue and say whatever needs to be said to get them to lay down the moment you see it. Structure the whole day around those naps, because they are SO important. If they try to power through it, they may have a major meltdown, exhaust themselves in a fit of irrational rage or overwhelming sadness, or physically hurt themselves and that is hard on them. Make their teachers aware of that particular need if they’re going back to school, get an IEP or a note from the neurologist saying so if need be. They NEED their rest right when they need it or else, they’re gonna have a bad time.
  • Sometimes, no matter what you do, they’re going to go into an irrational rage and they’re gonna have a bad time. Did you blanket the windows in their room? Create a space where they can let go and scream and wail and throw things and hit things. You can worry about replacing your door jambs later, right now they have no control and neither do you. Just hang on and love them through it the best you can, sometimes that’s ALL you can do. That’s nobody’s fault.
  • Get yourself and your other children therapy. Your AE Warrior needs SO MUCH from you, and you may find yourself swallowed in grief when parents who don’t have to shell out 14 medications a day or live in fear try to invite you to things you know you shouldn’t go to yet or constantly ask how they’re doing, expecting to hear some equivalent of “Oh, just fine!” But it’s not fine. It takes time. There should be no shame or hesitation in admitting that you need some time off or some meds or some help. These conditions change everything for everyone in the family.

My heart grieves for all of you and I hope what I’ve found through my experiences with this darkness helps you light the way!

Hug those little warriors for me.

 

 

 

 

 

 

 

 

 

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization. Tax ID# 81-3752344 Donations raised directly supports patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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