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  • Emily Johnson

PART 4 - WHERE ARE WE NOW?


“I’m willing to be the PANDAS mom for awhile. I’m happy to carry the stick for a few miles because I know others have carried it before me and at some point I won’t want to anymore.”


It’s been one year since Miles became acutely ill - so where are we now?


Before I answer that question I want to reiterate how hard it is to understand this diagnosis and the cumulative effect it has on a family. Unless you are living it there’s absolutely no way you can truly get it. I’ve been contacted by many parents beginning their own journey with PANS or PANDAS asking how to get through it and then I’ve had other parents of neuro-typical kids say, “I don’t know how you do it.”


What I say to other PANS/PANDAS parents is that I can’t tell you how to get through it. I can share with you what has helped us - but what has worked for us may not work for you and your family. And what I say to parents of healthy children is that I don’t know how I do anything - I just put the why first and then the how follows.


So here we are - PART 4 - WHERE ARE WE NOW?

I say “we” because even though it's the child that is experiencing the direct effect of the autoimmune disorder; the entire family becomes unwell.


To put it simply we are better and worse. Some of Miles’ symptoms are slowly improving with the help of homeopathy and Ty and I have built an incredible amount of endurance around caring for Miles. On the flip side, Miles has not been able to attend school since December (which is common for PANS/PANDAS kids) and Ty and I still struggle with the precarious balance of caring for ourselves, our marriage and our sick child while our other son remains in North Carolina with Ty’s parents.


Recently someone asked me what I did all day. This question came from someone who I know truly cares and was trying to understand what our life looked like on a daily basis. A snapshot of my day looks like this:


  1. Wake up with Miles in our bed. His intrusive thoughts and separation anxiety do not allow for him to be able to sleep by himself right now.

  2. Coffee and quiet time for Ty and I. Homeopathy for Miles. And then work with Ty to “plan” our day. Planning when it comes to PANDAS is impossible because these children are consistently inconsistent.

  3. The rest of the day is a whirlwind of self care, emails, advocacy, texts and phone calls, household chores, reading and studying, therapy appointments, an occasional walk with a friend, all the while caring for and being present to Miles’ needs.


Personally I have been directing my energy towards advocacy and healing.


I am anxiously awaiting communication back from the Commissioner of the Massachusetts Department of Public Health as I’m hoping to gain a seat on the PANS/PANDAS Advisory Council that will be formed later this year. The council will be working to recommend practice guidelines for the diagnosis and treatment of the disorder and syndrome; develop screening protocols; increase clinical awareness and education regarding the disorder and syndrome among physicians, including pediatricians, school-based health centers and providers of mental health services; provide outreach to educators and parents to increase awareness of the disorder and syndrome; and develop a network of volunteer experts on the diagnosis and treatment of the disorder and syndrome.


I’m looking forward to beginning homeopathy in mid February to help heal my own wounds and traumatic stress. The practice that we are using, Resilience Naturopathic, is incredible as they only treat PANS/PANDAS kids and families. They specialize in treating these children and understand how the disease affects the whole family.


And lastly I am nervously awaiting an email from Simmons University where I have applied to their Family Nurse Practitioner Program. Over the past year, thanks to PANDAS and COVID, I’ve been wrestling with the fact that I still have a deep desire to use my nursing degree, yet as an undergraduate I am limited in how I can practice. I cannot ignore this fire in my gut and I will refer back to what I said in the beginning of this post - I’m following the why and the how will follow. I’m not nervous about being rejected as I know I’m a well qualified candidate; however I’m nervous about what this will look like. I haven’t met anyone yet who has pursued a graduate degree while having a child with PANDAS. But what I do know is that there is flexibility in the program and there is always flexibility in life (unless we’re talking death and taxes). 🤣


So to end this, the last thing I can say is that this is where we are now - but tomorrow will be different.


Next week and next month will be different.

It doesn’t matter what you are struggling with … just know that there is power in acknowledging where you’re at and that your mindset will help determine your tomorrow.


P.S. - Please share with a friend who might need to hear this




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