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Hope for Evan's autoimmune disease (PANDAS)

$4,950 of $10,000 goal

Raised by 44 people in 3 months
This has been a long journey to try and heal our son, Evan. This has been an over 7 year journey of searching and seeking and trying to figure out what is going on with our son. It's been messy, hard, scary, and discouraging throughout the years. Trying to explain to friends and family the behaviors and how they come and go, never being able to find the right words to explain how amazing this little boy is when most of the time they see an anxious little boy with some big behaviors depending on how he's feeling. It's tough, but we can do hard things...

Autoimmune encephalitis (AE) can produce a very wide range of neuro-psychiatric symptoms. A major challenge in diagnosis is that different symptoms may appear at different times and different levels of intensity, so that the disease may mimic many other disorders. Some patients initially present with either neurological or psychiatric symptoms, further complicating diagnosis.

We had a follow up appointment to continue to try and heal Evan's brain with our pediatric neurologist in Washington DC to try and complete IVIG. The therapy appears to “reset” the immune system and has proven effective for autoimmune disorders. Unfortunately, insurance does not cover this. Total cost was $10,680. IVIG was $5,340 per day with the Gamunex IVIG, infusions and meds.

Over the last seven years we have seen numerous doctors, neuro-psych's, nutritionists, had way too many observations and evaluations. He has had numerous blood draws, catheters, mri's, CT scans, throat cultures, urine catches and hospital visits and stays. Once school started in preschool, he has to be removed from classrooms, was suspended, and then impulses got worse with hitting, kicking, biting, etc. Looking back, this always got worse when others were sick in the classroom, or someone he was close with was sick. When we knew he was really sick and something was going on, we noticed him trying to head butt others, had suicidal thoughts about himself or hurting others, he had to be safely restrained, had mania, impulses, attention seeking and avoiding behaviors, emotional extremes, food refusal, not sleeping, body pain, rages with nose bleeds, running away from school, and in constant fight or flight mode. It's been a long road with tons of unanswered questions.

Would love your prayers as we continue to try and heal our son and would love anything you can donate to help as costs are high for treatment for IVIG ***which insurance does not cover.

Man...this kid is a fighter though. He is a warrior and one of the bravest people I know. His superpowers are amazing and we are so proud of him.
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Evan is doing SO much better this morning. He slept great and we had no screaming from headaches or vomiting. With this being Easter weekend we are incredibly thankful and definitely reflective on his improvement. Most likely we are getting out of the hospital today, which is amazing!
♥️
First the pain. Then the waiting. Then the rising.
Not only is this the story of Easter...crucifixion, three days wait, and the resurrection- it’s also the story of anyone who has ever been hurt and then healed.
♥️
Pain- which is awful to see for yourself and your loved ones going through something so heartbreaking, but through the pain brings a tremendous rise.
♥️
Waiting- this is one of the hardest parts. Waiting can feel torturous and unknown. It can be scary and feel like you have to quickly rush to get things back to “normal”. We can’t be afraid to sit with our wounds until we can stand again. ✨ Jesus waited three days. ✨ Some wait years to free themselves from a painful past. But we are here. Don’t rush the process, because you’ll miss the progress.
♥️
Rising- when we go through the process, even the hard times and scary times, we will rise. Just like Jesus. He showed us that we CAN do hard things. And we can do those hard things with Him.
✨Pain—> Waiting —> Rising✨
♥️
Happy Easter weekend, friends!
So thankful all of the prayers and messages for our son. We’ve felt them!
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Evan now has aseptic meningitis, which can be a side effect from IVIG. We got home okay from the flight and stayed at my parents house, and then around midnight, it went downhill. He started getting an intense headache that worsens with sitting or standing and improves when he is lying down. He also had constant vomiting and nausea and a rash. We got to Children’s around 4 am or so and they got an iv in his other arm. They have fluids going and then have given medicine through that to help treat. I believe they said that he will stay admitted until the symptoms subside. He's sleeping now and we would love your continued prayers for him. Thanks for standing and being in our corner friends. We appreciate it!
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Day 2 is complete. We had a bit of a rash break out, but thankfully went away just as quickly. He did amazing and we are so grateful for all of the support. ♥️
(And he also beat me at Sonic Racing a ton today too )
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Day 2 has started. ♥️
Tylenol, Motrin and a Bolus of fluid and then the IVIG for 5 hours or so and then another bolus of fluid. ♥️
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$4,950 of $10,000 goal

Raised by 44 people in 3 months
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Bob & Ingrid Armstrong
27 days ago
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