Taylor's Undiagnosed Journey...

Never would we have thought that we would be where we are today. And for God's reasons, we are.

We want to share what Taylor has been through and where she is today, but first we ask a few things...

NO negativity, if you have nothing nice to say, then don't say anything at all and please keep moving.

Even if you cannot contribute financially, PLEASE PRAY with us, we believe in miracles, and our faith is strong!

Some of you know our sweet Taylor and some of you don't... Taylor was diagnosed with Autism & ADHD when she was in Kindergarten. Taylor has been high functioning Autistic where she is highly involved with Equestrian competitions, volunteering at Church, a member of the National Junior Honor Society, active in Spelling Bees, and she was on track to graduate with her high school diploma in 2024. Taylor is the sweetest girl in the world; she always has an encouraging word for her friends and she wants to be a worship leader when she grows up. (I used present tense to describe Taylor because I refuse to believe my sweet girl is gone.) But this summer, things changed for Taylor, and no one knows exactly why, yet.

Taylor's story, thus far...

In June of 2021, we had just returned from an amazing Mother/Daughter camping trip in California (one we had been planning for two years). As soon as we got back, she developed a stomach bug and some noticeable cognitive regressions. Ex: she would repeat the same sentence or forget how to do a simple daily task that she had mastered long ago, and she couldn't remember weeks at a time. I took her took the hospital, where they did testing & imaging, but they couldn't find anything. Their theory was that she was exhausted from the trip mixed with the stomach bug, which put her brain in an overloaded state. They referred us to follow up with Neurology. When I did try to make an appointment with Neurologists who took her insurance, they gave me the run around once they heard her story. And in less than a week, Taylor was rested and back to her usual happy self. (Photos from our trip)

July of 2021, the same kind of episode happened again, lasted only 4-7 days, then was gone just as quick as it came. We noticed a pattern of these now two episodes, coinciding with her menstrual cycle. At this point, I was still trying to find a Neurologist who was willing to see her. So back to the hospital we went and still no answers.

August of 2021, Taylor came down with a very mild case of Covid. We weathered it out at home but quickly noticed that she wasn't sleeping. Nothing seemed to work, Melatonin, Tylenol PM, Nyquil, Benadryl, warm lavender bath, absolutely nothing worked. 12 days... 12 days she went without sleep. Meanwhile, I consulted her previous pediatrician multiple times, continued the search for a neurologist, and visited different hospitals (NO ANSWERS). At this point, she was delusional, having hallucinations, wouldn't eat or drink, couldn't hold a utensil or a cup due to her hands being so weak, had episodes of manic laughter, couldn't tell night from day, and was OCD about anyone getting close to her because she didn't want to give them Covid. She wore a mask & gloves almost constantly and would panic whenever family members would get close to her. After about all I could take, we switched pediatricians and ended up at Joe DiMaggio in Hollywood for 10 days. And after 14 days, Taylor finally got to sleep with medications. She saw different professionals, teams of residents/ students, and had imaging, blood work, and test after test. They all tried but we left there STILL without any answers. No answers as to why she wasn't sleeping without medications, no answers to any of the mini-episodes she previously had, no answers as to why she had the same symptoms as when we left (except for now she can sleep with the help of medication.)

September 2021, upon hospital discharge Taylor was given Resperdon for hallucinations, but the side effects that developed were absolutely horrible. She ended up with severe dystonia- where her body seemed to turn to stone and was morphed and deformed. She also had severe muscle weakness, couldn't talk, and barely drank water or eat food when it was offered to her. We had to hand-feed her because her hands were deformed and so weak. She was utterly dependent on us to care for her in every way. It took us the whole month to wean her off that medication, and the side effects faded. But Taylor still wasn't back to her baseline (normal self). It breaks my heart to even look at photos from this time, so we decided not to post any.

October 2021, Taylor had a good month. She was not back to her usual self but close, she was more independent with her self-care and was eating normally. Taylor was even doing so well that we got to celebrate her 17th birthday with our family at her favorite restaurant. She only ended up having one OCD type episode that revolved around her menstrual cycle. So the Pediatrician prescribed the Depo Provera injection in hopes that not having that worry every month would give Taylor some ease.

November 2021, at the beginning of the month, the Depo Provera injection was administered,and we had a calm couple of weeks. Just before Thanksgiving Break I noticed Taylor had increased emotions, agitation, frustration, confusion and incontinence. Elopement (running away) also became a big problem. Taylor would try to run out of the house any chance she got, so extra locks and security had to be added for her safety. By the end of the break it was all out hell- she was destructive, physically aggressive, manic, and not sleeping. Taylor had hyper days where she would not stop talking nonsense, or where she would tear paper all day long, and days where she would run throughout the backyard destroying plants or trees, nights where she would pull out all of her clothes from her closet and pack them away in bags. Endless sleepless nights seemed to increase all of her symptoms. More medications were added to try and calm these episodes and her mood throughout the month and help Taylor sleep. But the medications didn't seem to affect Taylor's episodes or her mood positively. At this time, Taylor needed me (Mom) to care for her full time, as it became too stressful to try and manage both a career and Taylor's needs.

December 2021, again... we had a calm couple of weeks, then another bad episode. More destruction, physical aggression, manic behavior, and trouble sleeping. The destruction got so bad that Taylor had destroyed her room and the bathroom by the end of the month. What was left of her bedroom decorations or furniture had to be removed, so that she didn't accidentally hurt herself. She was left with her mattress, books, notebooks, stuffies and crayons. Again, throughout the month, medication was adjusted or added. But it didn't seem to be having a positive effect on the episodes or her mood at all.

January 2022, by this point Taylor's medication list is: 800mg's of Seroquel, Remeron 30mg, Limictal 1mg, Ativan 3.5 mg, and Ambien ER 12.5mg at night. We understand that medications can take time to work but we felt like it wasn't improving Taylor's situation at all. January was much of the same as the last two months- hallucinations and nonsensical speech, no concept of timeframes, an altered sense of reality, and needing help with all of her daily self-careneeds. With what felt like no improvement or hope for Taylor's future, we began to search for a "Second Opinion" or an actual diagnosis.

February- March 2022, we have been weaning Taylor off her medications, while searching for that Second Opinion. This way, professionals and we can have a clear picture of Taylor's actual state and not what could just be side effects from all of the medication.

Outside of Taylor's hospital stay, we have seen an Endocrinologist, Psychiatrist, Neurologist, Gastroenterologist, Neuropsychologist, and Neuroscientist. We understand even more now that Taylor's situation is complex to diagnose and even understand due to Taylor's Autism & ADHD, which can shadow other symptoms. We have had to seek some of these professionals privately, and some are covered under Taylor's insurance.

After seeking the Second Opinion, we have been fortunate to receive recommendations to seek further medical review at a major hospital here in Florida. They will continue to wean Taylor off her medications and then run further extensive testing. The duration of the stay is undetermined at this point and will be based on testing and progress. Taylor's medical journey thus far has been expensive for our whole family. They've all contributed where needed, but we finally decided it was time to reach out in hopes & prayers that you may be able to assist Taylor and (us) her family during this time.

We thank you for taking the time to read about Taylor’s story! We understand it’s a lot to take in. We are fully invested in doing whatever it takes to get a clearer understanding of what could have caused this and how we can move forward with getting her back to a better quality of life. We again ask that if you are unable to contribute financially that you join us in prayer for Taylor, our family and the medical staff that will be treating her along the way. Please feel free to share our story. The more people we are able to reach, the better!