Shiloh’s recovery from NMDA Encephalitis

Hey guys! My name is Tiffany. My little sister Shiloh has been at Scottish Rite since December 19th. She had been having seizures for a few months but had many new more severe symptoms begin the weeks before Christmas. I’m setting up this fundraiser for my sister Shiloh and Autumn. Autumn is Shiloh’s primary caregiver and has not left her side since this all began. She is currently staying at Scottish Rite with Shiloh 24/7 because right now Shiloh is requiring around the clock supervision and assistance. We aren’t sure how much longer Shiloh will require this care. Recovery from this terrible disease takes lots of patience and even more time. Right now Shiloh has been on a roller coaster of knowing what’s going on 1 minute to not knowing how to talk, bathe, or do anything for herself the next. They have already been at Scottish Rite for 2 weeks and the doctors have estimated they will be upstairs on the rehab floor for a few more weeks followed by at least another 6-8 weeks at the Ronald McDonald house for more rehab. As you know daily expenses such as food even with the parent discount at the hospital adds up. I would love if you guys could help me raise money to help Autumn and Brandon with bills, gas, and food while they are down there. Autumn has raised her little sister Shiloh since Autumn was a child herself. She has taken on the role of being Shiloh’s mother with such love and grace. She is one of the most selfless, hard working people I know. She never asks anyone for anything and would rather cut her right arm off than ask anyone for help. They have been living a nightmare for the last few months with Shiloh’s health. Autumn and her husband also have 2 other young children at home. If you can donate anything to help them financially so she can continue to be by her sister’s side, please consider doing so. Any amount will help. If you aren’t able to give, just send up a prayer for a complete recovery. Right now we are just taking baby steps day by day. We can’t wait to have our bright eyed always smiling brown eyed girl back to normal.

Here’s the updates from Autumn since they arrived at Scottish Rite:

Update #1

A village. That’s what this life takes. People who lift you up when life knocks you down off your feet. I thank God for our village! 6 weeks ago Shiloh Hall had her first tonic clonic seizure. 10 days later, another. After a CT, MRI and EEG, she was diagnosed with epilepsy. Since she has had 7 frontal/partial seizures. She has had difficulty with reading, writing and at times, speaking. Her ability to process started to decline last Thursday. She stopped sleeping, she gradually became unable to comprehend simple yes and no questions and stopped eating and drinking Sunday. She has since been admitted to CHOA with what they believe, and are treating aggressively, based on her symptoms is autoimmune encephalitis. Spinal fluid was drawn and sent for testing to the Mayo Clinic and one to Utah. These results take time to get back. She was finally able to sleep last night and today was a better day. We are hopeful the treatments will work and the diagnosis is correct. Also so very thankful for all the prayers and our little village we have surrounding us

Update #2

Update on Shiloh Hall:

We finally got a definitive diagnosis. It is NMDA Antibody autoimmune Encephalitis. If you have seen the movie or read the book BrainOn Fire, that is what she had as well.

It can start randomly or a lot of times in females can be caused by an ovarian tumor. We are doing an MRI scan this week to check for tumors. They said a lot of times it may be only 1 or 2 cells of tumor so in the beginning stages they are unable to be found on scans. If no tumor is seen on this scan, MRI will be repeated every 6 months for a few years. She completed her last dose of strong IV steroids this morning and also had done an (IVIG) immunoglobulin infusion for the past two nights. Last nights was stronger so it was tougher on her little body. It was slowed down due to her heart rate dropping down to the 30s making the infusion take a little more than 12 hours to complete. She will get a blood plasma exchange via subclavian in the next few days to replace or “wash

out” the bad antibodies that are fighting her brain. But a subclavian port has to be implanted first. We haven’t got a specific date for this bc of holidays. Once the encephalitis is reversed and symptoms improve, she will be transferred to inpatient rehab upstairs. She will be there for a few weeks to work on regaining her functions.

Thank you everyone for the continued prayers. I promise though I have not individually responded, I have read every single one. When Shiloh is better she will do the same I’m sure.

Update#3

Update on our girl. This will be a long post, as it has been a busy week!

She is seeing PT, OT, and speech therapy daily. The amount of damage this has done in such a rapid rate is astonishing. One of her labs came back positive for cat scratch disease. Bartonella henselae bacteria was present in the CSF (spinal fluid). So now she is being seen by infectious disease as well. They ran additional tests on the spinal fluid and labs and believe she had caught it 6 months to a year ago and do not believe it was not a contributing factor to the encephaliti. Although there is no way to really know either of these things. Eye doctor came to see her yesterday, the good news is there is no inflammation in the optic nerves so it does not look like the cat scratch had bind to them. She does have significant decreased vision in the right eye but, believes that is from the brain inflammation and hopefully will resolve as the brain heals. The Ativan is working good to clear the fog but she is over stimulated easily and that makes the shut downs worse. She is getting very aggressive more often now. We are on NG tube #4! It’s the first thing she goes for when she gets aggravated. We had to wait on being cleared by infectious disease before she could receive the Rituxan infusion to suppress the immune system. We were finally able to do that yesterday. She will receive another infusion in 2 weeks and again at 2 months if needed. They plan she will be on this floor for another 1-2 weeks. Then, we will move to the third floor for around 3-4 weeks for inpatient therapy. We will then move over to the Ronald McDonald house and she will be in day therapy from 8-2 Monday-Friday. We aren’t sure how long we will be there but they told us to plan for at least a month or more. It just depends on how she progresses. Once she gets to doing better while we are at the Ronald McDonald house we will get to go home on the weekends!

She is having to learn how to walk steadily again, maintain balance, and build her stamina back with PT. OT is working on dressing, bathing, brushing teeth, eating ect. Speech works on both speaking and cognitive challenges like following 2 step directions like touch your nose and then point to the ceiling. Also reading and writing because she has mostly lost those abilities as well. She is still hard headed. She is frustrated with having to be here as well as the state she is in. She denies being tired when she is doing the therapies, even though she clearly is. I wish I could say she hasn’t lost her light but, I can’t. This is every hard on our girl. It’s very hard on her spirit. Thank you everyone who has sent flowers and everything else she has received. Please know these truly made a difference in her day. And if everyone would keep those prayers coming for our family and the doctors’ guidance. But most of all, our sweet Shiloh.