Your absolute best

Recovery is an entirely different rabbit hole in my experience compared to the illness of PANS itself. Unique to each child it brings with it new challenges.

I have followed many a families stories to date. Some recovering, some relapsing, some still in the throws, some just starting out. Each one grips my heart the same each time.

Recovery for us has been slow, when you get to this point you will just know. It is not a straight line, it is as confusing and frustrating as the PANS and you will wonder if you will ever get there in one piece. Wherever there may be. You will wonder, every day, if this is as good as it gets.

Gone are the days of the intense madness, it is slower, there is more time to think. You slip out of the habit of having conversations in you’re head with doctors, how to convince them that your child is sick, and into the abyss of hindsight. Did I fight hard enough, did I say the wrong thing? Is that why no one did anything? Was it something I did? A choice I made? Should I have fed him better? Should I have given him that vaccination? What did I do? How could I have fixed this better? The questions are endless and the guilt deafening.

To date we are left with Chronic Fatigue Syndrome, Tourette’s Syndrome and a Functional Gait. For me the questions do not stop. Why? What can be done and how do I fix this? I’ll never stop until I have every answer as that is my job. As a mother, it is my job to figure this out, so my son can have the future he deserves.

A recent appointment with an audiologist showed a possible explanation for his functional gait/balance issues. Whether this can be fixed or not I am unsure, however it is another step closer to an answer. Kade is struggling to hear properly in crowded places. His handwriting is difficult to decipher, a possible side effect of drug interactions. The drugs that help him function on a daily basis. Choices, so many choices to make and no one can tell you what the right one is. It is on you and you alone. It is heavy and you will carry it every day.

Recovery is when you scrabble around finding the last little pieces and see if you can make them fit into the puzzle. It is the game you play alone in your mind.

It is dark and confusing here, yet it is beautiful in its own right. To watch your child stand up and walk, when it once seemed impossible. To watch them smile. To see them achieve what you know is important to them. To know they have been to hell and all the way back, yet their soul is untouched by the demons that tried so hard to take them.

Recovery is not perfect. The child that goes in is not the same child that comes out. Regardless of the residual symptoms that may persist, please know that you did your absolute best.

6 thoughts on “Your absolute best

  1. Thanks for writing this! I relate to so much of it as I, too, find myself dealing with Chronic Fatigue Syndrome. Do the doctors have any hypotheses as to why Kade would develop that after recovering from AE? I’ve been trying to figure this one out for myself but haven’t quite. Anyway, best healing wishes for you all going forward. ❤

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    • Fatigue was something that he had early on at onset really that was helped by the IVIG. One test we had by Dr G (functional doc) called the Chronic Fatigue Profile, showed that his body was not producing energy efficiently (mitochondrial dysfunction). I believe this can be caused by many different things like chronic inflammation, infection, allergies, trauma etc. Best wishes to you too 💜

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  2. “Kade is struggling to hear in crowded places”. There’s a phenomenon called ‘cocktail party hearing’ which might be worth investigating. Also, does he suffer from hyperacusis (very sensitive hearing)?

    Liked by 1 person

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