I’m glad you’ve stumbled upon my blog, but I know you’re here because you and your child, (or, a child you know) are struggling in ways you could not have imagined. You feel like your lives have been turned upside down. PANDAS (not the cute bears) but Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep, is a debilitating disorder with often sudden onset of symptoms like OCD, tics, rage, anxiety, sensory issues, eating and sleeping issues, dilated pupils, urinary problems, severe separation anxiety, changes in school performance, and more. Please see pandasnetwork.org for more detailed information on symptoms, it’s a great resource. PANDAS is perhaps more accurately described, by one mother, as Pediatric Autoimmune Neuropsychiatric Disorder Associated with “Something” instead of “Strep” because the symptoms can be caused by so many other things. PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) was introduced because of exactly that. PANS can be triggered by other infectious agents (like Lyme Disease, Mycoplasma, etc.) and other triggers like environmental factors and metabolic disorders.
This blog is going to be my very real raw feelings about being a PANDAS mum. Grab your cup of tea, coffee or glass of wine. I’m going to take you on our journey. I want other parents and caregivers to know they’re not alone and to have a glimpse inside of the lives of a family with a PANDAS child – PANDAS hell is real. You are NOT crazy, even if you feel like you are. You might be dismissed or ignored by Doctors, family, and friends who do not believe you, but YOU know your child best. You know when something is wrong, very wrong. Become a mama warrior (or dada warrior) and keep searching and pushing until you get answers, until you find a Doctor who will listen and who knows how to treat this complex disorder. Write everything down and take videos (discreetly) of your child’s new bizarre behaviours. We wish we had filmed our son when he was at his worst but now that exists only in our memories.
There will be moments (probably even several times a day) when you want to run away, when you long for your previous life, when you might feel like drowning yourself in a bathtub of wine. There will be times when you’ll miss your sweet baby the way he was before he suddenly changed, that your heart will ache. If I close my eyes tight I can almost feel my beautiful baby in my arms and see his lovely smiling face – oh he was such a happy boy – I want to hold him like that in my arms again and find a way to protect him from what was to come. The tears are rolling down my cheeks and I almost can’t see to write this anymore, because I don’t have a magic wand. I can’t turn back the clock. I’m heartbroken because he was only 2 years old when this happened to him and we will never get his childhood back. I feel like it was stolen from him.
There will be days, many days, when you think you cannot do this anymore, you cannot do it for even one more day, one more minute. I’ve been there. Sometimes I’m emotionally and physically wiped out and it’s only 9am. But somehow, and I promise you this, you WILL find the strength somewhere deep inside you to keep going, to keep fighting. There will be good days, or even good moments in a totally horrendous day, that you’ll cherish. We have learned to soak in those days, as sometimes they’re few and far between. All PANDAS kids are a little bit different and respond to different treatments. Unfortunately there’s no one “cure” fits all. It can take a long time to find something that works. Remember, it’s a journey not a race (even if it’s a journey you wish you weren’t on.) Fortunately, some children respond very quickly, especially if they are diagnosed and treated right away. We were not so fortunate. It took over 2 years to start getting appropriate help for our son. And we tried so many things over those years until we found a Doctor who understood what we were going through. We have been desperate SO many times over the years. The key is to always hold onto HOPE (Hold On Pain Ends.) Other PANDAS parents are a lifeline. They are beacons of hope in a sea of despair. There are wonderful support groups on Facebook. Without the support of these parents around the world going through the same thing, and the help from loving family and friends, we might not have survived this far. Cling on to hope – sometimes it’s all you’ve got. The road can be long and tough, but children can, and do, recover from this. Be gentle with yourself and take care of yourself too so you are able to be strong for your child. There is a light at the end of the tunnel – remind yourself this. Sometimes I can see it in my son’s eyes. I love this quote: “Sometimes when I need a miracle – I look into my child’s eyes and realize I already created one.”
We are still working on getting our little man better. I hope you’ll join us on this road trip and keep reading. To understand our journey, I’ll have to start at the beginning of the story…
Lots of love xo