A mother’s story of her son’s struggle with PANDAS and how they came through it.
Today Rachele is sharing their family’s journey, Rachele & James have 4 sons and a daughter, her 2 bigs and 3 littles. Their story of adopting their eldest two children is a tear jerker and heart warmer for another post. Rachele and her crew currently live in the country with lots of space for her very, very active boys to run and play (if you knew them you’d understand how awesome this is).
In this post we are going to talk about her first born, Zadok and some of the journey they have had with him. For anyone that has encountered ADHD or PANDAS (we will get into what that is), this story is for you and we hope you can be encouraged.
What happened a couple of years ago that changed your family drastically?
This all really started when Zadok was 5 years old in kindergarten and it was multiple fold, there was the head injury, that is where it all began because it went downhill from there, that was huge. Eventually we found out it was not just a head injury – it was autoimmune encephalitis – from strep throat that had gone to his brain, we just say concussion cause it’s easier and part of what triggered everything.
What were some of Zadok’s symptoms? What had changed?
Memory loss, would not even know who I was at times, talking different languages at school, weird things, screaming people were being too loud when no one was even talking, stuff that made you feel like your child was gone. He was dealing with Tourette’s and extreme aggression.
How did you start finding some answers?
The concussion is what started us going to all sorts of doctors and no one could figure out anything. He got a little better with time, but was still struggling. Doctors did not have answers as to why he all of a sudden, after a head injury, began having all these extreme behaviours. We had pulled him from school because of it, but the next year of school was coming up and we really wanted to try again, we wanted to have some answers and see him heal. The head injury started to uncover some others behaviours that we hadn’t clued into previously, we realized Zadok struggled with some ADHD behaviors. Poor guy, he had a lot going on at this point – the head injury/encephalitis and ADHD.
We were then realizing that whoa, he has had ADHD since he was born but didn’t recognize it. We always just thought, oh well he’s just a boy, but then I’d watch other kids and be like, um nope, this is another level. When Zadok would watch a show he’d run circles around the living room, that kind of thing. Turns out not all kids do that!
We were very anti-medication for him because of some of the experiences my husband had in the past watching friends go through similar struggles, so I began to try and brainstorm what we could do as natural options to help him recover and transition back into school. Without doing anything, all I could picture was us sending him to school, him being labelled the ‘bad kid’ and it’d be too much for them and for him and for us! I knew we had to do something significant.
I was searching online about ADHD (not knowing that the more intense behaviour since the concussion was much more than that), looking for success stories from people who have tried alternative treatments. I found a story of a mother who tried everything for her son, I could almost cry knowing what she went through. She felt like she was losing her son over and over through the whole process of trying different medications. In the end she found a BioMedic doctor that started treating him through diet. And that was the thing that changed their lives! I was a bit blown away learning this. I knew we had to go straight to diet, I would never have known to look at diet for ADHD without hearing this woman’s story.
I then began searching diet/ADHD, I came up with a local BioMedic doctor that had written all these sophisticated articles that combined science and a willingness to try new things, and all her articles were about how ADHD can be healed with food! She explains that a lot of the time it is actually a reaction to food. The hyperactivity comes from the body trying to function through the reactions to things it should not be having. I contacted her office seeing if it was possible to get an appointment and we miraculously got in. School was 7 months away at this point, and it’s not that school is the goal, healing in the goal, but school is a way of us measuring how much he was improving.
We ended up at the appointment and start talking to her about the ADHD, after explaining the whole journey to her, the strep, the concussion and all that happened, she looks at me says, “He has been mislabeled, it is not ADHD, it’s PANDAS.”
I couldn’t believe it, I had come across PANDAS on my own and felt like this was part of what Zadok was dealing with, but I gave up on it because everyone said that IF you found a PANDAS doctor you’d probably have a 5 year waiting list!
I had gone to her because she was an ADHD specialist but she proceeded from there treating him for PANDAS. She explained to us how the brain can rewire itself when given the proper nutrition that your body need. She went into detail scientifically to explain it to us, showing us brain scans of what the brain is capable of. I appreciated the science behind this, that it wasn’t just an ‘eat healthy and you might improve’, it was clear there was research behind this and proving it to be true.
What is PANDAS?
PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It’s a mouthful! A child can be diagnosed with PANDAS when: Obsessive-compulsive disorder (OCD), tic disorder, or both suddenly appear following a strep infection, such as strep throat or scarlet fever. He had had strep throat just prior to the concussion, but we had no idea. It is also characterized by sudden aggressive behaviours, and this happened with Zadok.
So what was the diet and how did you make the switch?
We were told to cut all refined sugars, dairy, grains, corn and soy, basically a caveman diet. I had a mini freak-out, I had no idea what to feed him! At this point he was 6 years old. It’s not easy telling a 6 year old that ‘you have to go on a special diet and no one else has to’.
And it was HARD, I struggled with what to make him and it wasn’t until I met with you and you told me that it was a modified Paleo diet and to just search ‘paleo pancakes’ or ‘paleo pasta’ that things really started to get easier. It just clicked at that moment. It was then simple. And we were able to continue it for a solid year. We had almost quit after two months because we weren’t seeing much change in him, but decided to give it a bit more time. Then at the 3month mark, all of a sudden, everything changed. I realized he wasn’t running around our house anymore, just like the PANDAS doctor said would happen – the hyperactivity stopped, no more fidgeting all the time, no more spinning for an hour, no more outbursts of aggression and no more night-time issues (which he’d had for years).
So we stayed on it! He loved the diet and he would refuse food he knew he could not have, you could tell that he was beginning to feel better. We continued the diet for a year and that led us to this past March where he had even greater breakthrough and we were able to come off the diet entirely. Long story short, he had a high fever (which when you learn about PANDAS, children with it don’t get fevers), so we knew that his body was really healing, and a high fever can actually be what releases the final inflammation from the brain and brings the breakthrough. And that is what happened with our Zadok. Being on the diet enabled his body to regain balance and start responding the way it is suppose to. As weird as it is to say, the fever was a good sign!
Family life changed huge for us, we were able to go places together again, have dinner together – we had gotten rid of his chair at the table because he would never sit in it previously! He was able to start school and it didn’t come without it’s bumps and a learning curve for all of us, but his school was incredible, the staff were understanding and helpful. It’s important to know that it wasn’t an instant ‘everything is magical and perfect and no issues’, he still had to adapt to a new environment and was still healing in a lot of ways. But it was night and day from where we came from. We felt like we got our boy back. We know we need to get back on the diet, now that I’m talking about it, but that’s part of the journey too.
If you could encourage anyone in a similar situation, what would you say to them?
My encouragement would be that you really do know your children best. You are their best advocate. Even when you feel pushy and you feel like you are not getting anywhere, keep praying, keep digging and keep fighting for them in every way you know how. Surround yourself with people who are ahead of you in the journey, it will help give you wisdom and be a huge support in those times where you feel like you’ve hit the wall for the hundredth time. There is strength in a parent’s heart and there is strength in community, use both!
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