When Sophia woke up on the day of her preschool graduation, she innocently asked when she would have her graduation party. We all laughed, because we knew she had heard us talking about and planning for Karis’s party for months and didn’t really know the difference between a preschool graduation and a highschool graduation. She was insistent, however, so we settled on a trip to Bruster’s after graduation that night to celebrate.
However, once the craziness of the graduation weekend settled down, I began to remember the unbelievable health battle we fought for Sophia to get to this point and I decided that I did indeed need to publicly celebrate her preschool graduation so we would never forget how God healed her from a very terrifying illness.
Right around her second birthday, Sophia’s personality and health changed drastically very quickly. It was almost exactly 8 weeks after a tick bite plus a difficult bout with covid previously and strep afterwards. I couldn’t believe it at first. Hadn’t we already suffered enough from Lyme disease? Surely God would not allow this to happen to my precious baby! But I quickly realized that all we had gone through (and were still at that time going through) with Abbi was what God used to save my baby. Had I not researched every waking moment for Abbi, I would not have recognized the symptoms of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).
Sophia had been speaking in complete sentences for some time and pretty much never stopped talking. She suddenly began stuttering and then began losing her words completely. She would try to communicate with me and then just begin to cry and scream in frustration. She also grew to have incredible OCD, not the kind we tease about when someone needs things lined up perfectly or has to close all the doors, but the dangerous kind where she would literally be afraid to take a bite of food because her brain was telling her it wasn’t safe to choose which bite to eat. Any kind of choice would leave her distraught and in tears, whether it was as simple as choosing what to wear or which fork to use to eat. And she wouldn’t believe my choices were any safer. For almost a year, she couldn’t handle wearing anything other than fleece footie pajamas, even outside in our backyard in blistering summer heat. That was the only clothing that felt safe to her. She was terrified to take a bath and the few times that I was able to force her in the tub, she had to wear a bathing suit or she would be out of her mind in terror. It was impossible to even leave the house many days. She was overwhelmed and paralyzed by (very real to her) completely irrational fears. She also began fighting her bowel movements. This was not constipation as experienced by any of my other five girls. She honestly had not been having trouble with that prior to the sudden onset of this illness. No, this was absolute terror and fighting of the most basic, primal need with every muscle in her body. Her brain was telling her it was not safe to poop and she was determined not to do it. It was absolutely crazy to watch. She also had extreme separation anxiety to the point where she would scream with terror every time I tried to even go in a different room. Loud noises suddenly disturbed her. I couldn’t vacuum my house or use my hand mixer when baking or let my other girls be noisy. Night terrors began and she could no longer sleep alone.
The scariest part was actually that when she was the most inflamed, she would even be scared of me, the one she usually clung to. It was so heartbreaking. She would flail around on the floor and yell and kick and scream at me to stop when I was literally doing nothing but standing there trying to shield her little body from hitting things that would hurt her as she had her panic attack. There were so many days that I had to call Mark to come home from work because I was terrified and didn’t know what to do.
Now I know that one of those symptoms by itself could be considered a fleeting childhood tic or phase. She could also have easily been considered autistic. However, after parenting five other kids through all the stages, I knew without a doubt this was not normal. This had all happened suddenly. It was brain inflammation and I was losing my precious baby.
To make a long story somewhat shorter, we battled with the pediatrician for months, trying to get the necessary medication and tests done to get the help we needed for Sophia. Afer months of going on and off antibiotics, the pediatrican finally referred us to UVA and they agreed that it was PANS but honestly didnt have any magic treatment that would help her heal. I pretty much knew all the advice they gave us already from my research and the doctor there basically said to keep on with what we were doing and hopefully she would improve over time as long Covid dwindled. By that time, we had pretty much given up on western medicine and gotten her in with Abbi’s brilliant practitioner, Restoring Balance w/Nicole Hanse. We saw definite improvements within a week of starting her on an anti-inflammatory diet (cutting out gluten, dairy, oats, corn, sugar, seed oils, food dyes, etc). The herbs and homeopathics that Nicole recommended started to make a difference as well. After just a couple of weeks working with Nicole, we were able to wean her completely off of the antibiotics that she had been stuck on for months! (Previously, every time she went off of antibiotics, she lost her language and got dangerous OCD again.) She struggled on and off for another year because true healing takes time, but we saw a steady improvement that helped us know we were on the right track.
I honestly did not think she would be ready for preschool last fall. She had made a lot of progress in her health, though, and really needed a positive experience with other kids because the trauma of it all had made her a very fearful child. I considered homeschooling her as we had done with most of our other girls at this age, but it just seemed like she needed more social interaction to break out of this anxiety shell she had been in since getting sick rather than clinging to me for another year. We adore the preschool teacher (Annette Jones) at our school and knew she would work with Sophia and help her grow. So we hesitantly started her with only two days of preschool a week, actually planning to repeat preschool next year and do 3 days a week to help her get ready for Kindergarten. Unfortunately, she caught Covid the second week of school and she was really not back to normal for at least a month afterwards. I had started a new job tutoring on the days she was in school and every Tues/ Thurs it was so hard to leave her when she wasn’t feeling great. I wondered if we had made the right decision in putting her in school. But she actually really loved school and wanted to go back as soon as she was able. And it took her a while to break out of her shell, but she really thrived! As her health improved, her fears went away and my once fearful and introverted child changed into a social butterfly who now never meets a stranger! She makes a new friend every single time we go to the park or a soccer game! Around Christmas time, we started battling the question about what if she actually is going to be ready for Kindergarten next year? She has learned so much and is reading every bit as well as my other girls at this stage. Does it make sense to leave her in preschool again with kids who don’t even know their letter sounds yet? We finally decided that she was ready to move on and the last couple months of school have only strengthened our decision.
For those of you who have endured this long of a post, thank you. I wanted to write it for several reasons. First, to praise God for healing my baby! I know he guided us each step of the way on the path to her healing and the prayers of so many dear friends and family were so much appreciated. Suffering never makes sense at the time, but the lessons learned are invaluable. Everytime we were terrified and didn’t know what to do, God showed us the next step. Not instant healing, and that was ok. He never left us alone and He brought the right people to encourage us and help us exactly when we needed it most. Everytime I think of how far Sophia has come, I cannot help but cry. And my Abbi. She was struggling a lot during that same season. One particularly hard day, she was angry and devastated over her own pain and all she had to miss out on. She brokenly asked me why God allowed this to happen to her. It was utterly heartbreaking but at that moment a sudden realization hit me. I told her that in addition to other things God was teaching us, it was so her baby sister could be saved. I would never have known it was brain inflammation and what I needed to fight for if Abbi hadn’t just gone though such a battle. And if Sophia’s brain inflammation had continued any further, she might never have recovered her language. She could have regressed too far to be normal again. Abbi’s battle helped her sister find healing before it was too late. They continued healing together and are both thriving today! We are so thankful!
Secondly, I wanted to bring awareness to PANS and PANDAS. It is a real illness that many do not know about. And Lyme and Bartonella, Babesia, and all the other co-infections that have plagued my girls. Please feel free to reach out to me if you are struggling with health issues. I have learned more than I ever wanted to know but I know that it is for a purpose. I have a Faithful God who heals and I also know a great practitioner who can help the immune system heal so it can fight all these pathogens that are so prevalent today. I have a firm belief that God has designed our bodies to heal and every chronic illness can be helped with the proper care. Please have hope! My family might hate ticks but we aren’t scared of them any more. We know what to do. They are a part of life if you love the outdoors like we do. We’ve already gotten several ticks this spring in various places all over Roanoke and while my kids might fuss about the yucky herbs I give them, we will be ok. I praise God for all we have learned and how we might help others. And this season we are especially rejoicing because Sophia graduated from preschool. It might seem like a small step that everyone takes, but we honestly did not think that she would be able to do that this year.
