Get Lizzy Better

We are raising money to help Lizzy diagnosis and treatment for what we suspect is seronegative autoimmune encephalitis.

We have the opportunity to see a doctor in New Jersey, who has helped other parents that I have met in support groups. She has been moved to top of waitlist, as he’s booked into next year.

Lizzy is almost 16 and has been suffering over 2.5 years. We fear what long lasting damage could be happening to her brain because of lack of care. Getting a clear diagnosis is part of the issue. Lizzy has been seen in 3 major hospitals with no help.

We have already spent tens of thousands on doctors out of network, as we were getting nowhere with the general community. We received some help and she made a come back after receiving TMS brain treatments, but it was short lived. It’s possible that the TMS helped bring inflammation down, but without treating underlying issue, it does not last.

Lizzy has taken a turn for the worst recently and we can not delay.

Lizzy woke on Aug 26th with abdominal pain. She then started having trouble opening her eyes and getting her voice out fully. She then developed mouth ulcers. At the onset of ulcers, we also noticed some weakness and memory issues. It rapidly got worse to the point she couldn’t walk and had profound memory issues. She no longer remembered most of her family, her name, age, how to read or write and more. She eventually got so weak she couldn’t lift her head. She had age regression and personality change. She was very confused and acted like a toddler. She would scribble all over herself and even eat things she shouldn’t. She started having trouble urinating and eventually ended up in diapers. She eventually had slight improvement as her mouth ulcers went away and she regained some strength. She worked to get stronger in therapy, but her memory and voice didn’t return. She still couldn’t walk without great assistance.

That spring she severely declined again after an illness hit our home. All progress was lost. Mouth ulcers reappeared. The small memory improvements she had were lost. This time she started losing feeling in her legs completely. She also had decrease in vision.

After getting no help from general community, this is when we started looking elsewhere. She saw a couple doctors and was now diagnosed pancreatic insufficiency and trying to get assets for more.

Saw a naturopath who suspected MCAS, mold toxicity, and bartonella. He started her on mast cell stabilizers and we tested her and home for mycotoxins. Both were high. We had extensive remediation and started supporting her detox. We were also referred to a special “out of the box” neurologist. He could see brain dysfunction on QEEG and started doing TMS (transcranial magnetic stimulation). We also bought a hyperbaric chamber to help with inflammation. She made a huge come back.

While in the depth of being sick, she had been placed in functional life skills curriculum in IEP, but now she was making huge progress towards catching up and being on grade level. We thought we had figured it out. Until she had another decline that started with weakness and brain fog. She also started having issues with her kidneys. We paid for a few more visits with specialist, but have been restrained by finances. We’ve been trying to get insurance to help.

A couple weeks ago, she started getting headaches and feeling like she would slip in and out of being present. I know wonder if she could be having absence seizures. This is something we had seen before also.

Then 1.5 wks ago, she woke extremely weak. This weakness progressed, so she now either needs wheelchair or walker. She has trouble using her hands and even needs help dressing and with every day tasks. Mouth ulcers have reappeared. She has increased memory issues, as well as starting to have trouble urinating. We noticed new striae on her body, this time all over her back. This has also been a pattern. She’s developed nose bleeds, as she had in the past. She is having difficulty chewing and swallowing.

We are desperate. I’ve been very concerned this past year about long term damage that can happen.

There’s a lot they do not know in medical field and they are currently finding new markers and patterns. From countless hours of research, she seems to fit seronegative autoimmune encephalitis. We need someone who deals with this.

We humbly ask your support in getting her care. We would continue to pay if we could.

feel free to share this and Lizzy’s journey on FB.

https://www.facebook.com/profile.php?id=100082665344684&mibextid=dGKdO6