A Revived Roaring Mouse ...does not like P.A.N.D.A.S.

Roaring Mouse

A Revived Roaring Mouse ...does not like P.A.N.D.A.S.

Roaring Mouse
"Once a caregiver, always a caregiver!"  Ahhh... but now I find myself considering that it's not just the heart but the role and that the second time around it can be very different.

Before I go further...let me say a BIG hello to all those who remember me and give you hugs!  Yes, I've been here before.  I was three months pregnant when my husband was in a hit run that left him paralyzed.  Six years later when our daughter was 5.5yrs old he passed away with tetraplegia, three rare neurological disorders and a partridge in a pear tree. I moved on...into a new home, new job, new friends, and new school for my daughter.

Recently I've been on a journey that has led me down a path I've never heard of.  It has revived many memories.  I've deliberately chosen to build on the caregiving memories that will give me strength, peace and fortitude. My child has been diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection (PANDAS).  I've been through a first year college education with it in only the past two months.  A year ago my daughter had throat strep.  This past March I brought her back in because her behavior was either good or violent.  The doctor after hearing and seeing her decided he would test her for strep.  WHAT??? That makes no sense! Eh yep!  But this was called "strep on the kidneys". Me: "Never heard of it!" She got a dose of antibiotics and we thought we were done.

Nope.  Two weeks later she again tested positive.

And again!

We got a break.

And now we are giving her yet another dose.  More research and the doc and I are in agreement that she has PANDAS.

(After throat strep (age 4-12 approx) if the immune system is weak, a leftover toxin from the strep (non-contagious) remains in the body. It spreads like venom from the kidneys to the brain.  If the brain, is inflamed, and the strep is alive, then it can cause a whole host of problems.  Read up on it here: www.pandasnetwork.org.)

My child when the toxin is active turns into this violent mean person that is totally and completely not like who she is, sleeps volumes and is also losing her memory.  To quote what I've read so much on this:  "I want -my- child back!"

Currently she is seeing a primary, and a nutritionist.  We are waiting for provider approval on a very highly recommended Licensed Family Therapist, and on stand-by to see a pediatric neurologist ASAP.

_____

I've cried, been angry and reached deep for my sense of humor again...pulling these out of a bag I never intended to go back too.  I'm back to recording events and trying to pace myself.  In the meantime, we've given these "events" the nickname of "Pencham" for the panda Pokémon character who is a rough and tough little guy.

I'd love questions and thoughts on this!

Thank you Denise for starting this amazing project...that I know so well and could so easily come back too!

All my best!

The Roaring Mouse

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3 Comments

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jan

Thank you for returning here, sharing your new situation, and educating us. I hope your daughter responds well to her diagnosis and soon returns to predictable life. Thinking of you.

Lark

Oh my! Your story shook me up a bit. I guess the idea of going through two events with people you love so much brought a wave of deep sorrow. I am grateful you have this place to return to at this time.\r\nI have never heard of your daughter's condition but I am sure going to check it out.\r\nMy thoughts and prayers are with you, friend!

Jean

RM, I was glad to see your name here, but then so, so sad to read about your daughter. I can't even imagine how frightening this time must be for you and your daughter. I know you're determined, strong and have lots of tools in your skill set that will serve you both well. You are well equipped to fight this battle. \r\n\r\nHugs... and you will be in my thoughts and prayers. \r\n(I remember you well from the former aftercaregiving website. )