Hello, I am hoping some of you can help me. I have been on a Lyme/Bart "Journey" with my 8 year old for 4 years now. From about birth to 5 years old he had what is presumed to be congenital Lyme, and had very light developmental delay/mild ASD and some body issues like low tone, tired easily. We treated in various ways, and things were tremendously improved for about 1 year he was totally normal, happy, social, curious, good natured, academically advanced. He lost any concerns of ASD by age 3. We were so relieved.
Unfortunately changes happened about age 4 or 5 slowly. He seemed to develop a hoarding feeling with anything that I was getting rid of: any trash, donating clothes, scraps of paper he would freak out and cry if he thought he was never going to see those items again. If I was going to put something away that he built like a train track or block tower he would flip out.
He slowly lost interest in almost everything that brought him joy in the past (riding bikes, expressing love to family members, reading books, coloring). He had done all of these things, and was always looking forward to the future holidays, visits from family etc. He is totally opposite now.
He began new hobbies that I thought replaced the old, but now it is clear these were OCD compulsions: folding origami for hours at a time, studying maps, or playing piano. He did each of these separately as his only hobby for a few months, then would move onto the next thing. But now even that has stopped and he has no interest. He only plays computers, jumps on trampoline tapping the side of the net for about 2 hours a day, or lays around doing nothing.
He also began a constant whistling that lasted all day and went on from about age 6-7. It was totally uncontrollable.
He has replaced the whistling with moving his hands like he is piano at various times throughout the day.
He acts unloving and often mean to family members with no warning. Laughing if someone gets hurt, not greeting someone as they arrive home etc. He used to make bday cards and gifts and feel so proud to share.
He also spends much of the day saying he is hungry and asking for snacks even when he just ate.
He used to love doing art, drawing, and writing stories. He never reads, writes, or draws. When he does, it looks like a 3 year old's work.
Most notable and devastating is behavior and mood change that often mimics bipolar. He switches back and forth Jeckyl and Hyde style during the course of the day. We all walk on eggshells and any little disappointment (or sometimes without provocation) creates a major rage often ending with him trying to hit himself or bang his head. He says things like "I want you to hurt me".
I have been at this a long time and have done all the basic things, gluten free, casein free 2 full years, probiotics, fish oil, carnitine, b12 shots, lyme antibiotics, lyme herbs, amino acids for mood, testing for rare disorders that can mimic bipolar, neurofeedback....the list goes on.
So now I am wondering if this can possibly not be lyme anymore, and the antibodies have just caused PANS. Since the disorders are so similar I am having trouble pinpointing which is the one causing the major symptoms. He is a shell of hi former self.
I have had to homeschool him the last 2 years due to his volatile moods, and lack of motivation.Teachers don't know why he is fine one minute, and oppositional defiant the next.
I have great Lyme experts that I have worked with in the past (and currently) and it seems like things lighten up a bit at first then get bad again. But the old enthusiastic, creative kid has never returned. I would love any feedback or advice.