Opsoclonus Myoclonus Syndrome

Medical Update

Medical Update

Medical Update

Here is our current Medical Update.  We went for his 3-month neurology check-up yesterday.  So thankful that it is a closer drive and for the most part, uneventful.  Add that to it was an afternoon appointment and that meant home earlier.

Thankfully, I had 1 freezer meal left from my massive freezer cooking session.  I was able to get the rice started and the food ready before I even left.  One less thing to worry about.  Also, a friend stood in the gap for me. She came and babysat one of my children, finished supper, and picked up another child.  Then, she got the privilege of seeing through a child and having to discipline her.

Fun times.

Missing our Navigator

I did not have my navigator with me, so I missed my wing-woman a lot.  Alyssa had been going with me to all our doctor’s appointments and IVIG appointments.  Who said having adult children would be stressful?  It is, but still, she has been a huge help.

Anxiety Attack

We pulled in and I got him out of the van and immediately, he started showing signs of intense anxiety.  I let him bring his flamingo.  He wrung the neck of that poor bird.  When he put it in my purse, he started wringing his hands and the bottom of his shirt.

Normally, he is talkative, smiling, and willing.  This time, he was anxious, scared, unsure of his surroundings and agitated.  I put some oil on him and on me.  The nurse called us back and he would not even move.  That is so unlike him.

Reasoning

I kept telling him that we are just here for a visit and that there were no IVs today.  He didn’t care.  It was almost as if he were refusing to do anything.  He would not stand on the scale.  When it was time to measure him, he would not stand up against the wall.  Nothing.

Mini Nap

We got back to the room and I told him that he was not being kind to the nurse, which he wasn’t.  That he needed to listen and do what he has always done.  He was scared and tired.  I made him sit in my lap and close his eyes.  That is his least favorite thing in the world to do.  God forbid he would fall asleep and miss something important.

I got on my phone and I turned on Debbie.  She has sent me some songs that I have kept saved on my phone all this time.  We listen to her every time he gets scared.  Within 30 seconds, he was asleep.  He probably slept on me for 30 minutes.  When the doctor knocked, he never moved.  His body simply melted into mine.  Hearing Debbie relaxes him so much.

Conversation with Doctor

I’m glad he fell asleep.  It gave the doctor and me quite a while to talk things through.  We spoke for about 20-25 minutes before she even touched Hunter.  I appreciated that.  She is a mom of young children so she gets my plight and she allows me to have my moment.

All in all, he is stable.  He is not in remission, though she believes that remission is on our horizon.  Yet, even though he may get into remission, flare-ups are par for the course.  It sort of is what it is.  We have determined that he is allergic to some filler that is in his steroid, which causes him to itch.

She also made note of the fact that his IVIG makes him WILD the next couple of days.  He isn’t just wild…he is wild-eyed and not stopping for about 2 days.  I guess that is a side effect.  Honestly, I would rather him be wild than be sick or have headaches which are the normal side effects.

PLEX

We will probably do PLEX (Plasma Exchange) in the summer.  This is aggressive and it will be her first case of OMS that she does this on.  Normally, a dr will do ACTH (does not work for Hunter), Rituximab (does not work for Hunter) and IVIG (makes him wild).  If we do not do Ritux (a type of chemo) another option is Cyclophosphamide (more intense chem).  I really would like to avoid that.  He does not have cancer and our goal is to get rid of B cells.  That would certainly do it but he would have chemo side effects.  PLEX can do the same thing, yet it is still a hard thing to do.

PLEX is like dialysis only it is for your blood and not kidneys. It is a 5-day hospital stay and then after that, we do IVIG.  IVIG puts in new, healthy B cells in hopes that his body will start producing it on its own.  It is hard.  All of this is hard.  I just wish it would go away but I will continue to praise Him in this storm.

Plan of Attack

She prescribed him a LOW dose of an SSRI to help with the anxiety.  It may or may not work.  Hunter tends to not respond well to any medications.  Good times.  For now, we will still do Symphony of Cells on him and relaxation techniques.

Mobility Dog

She is all for him getting a mobility service dog.  Since we are unsure of what the future holds for him, physically, she is writing a letter of support for this process.  This will help him in so many ways.  Mobility dogs are amazing and it could just open up so many things for Hunter.

God is Bigger

Sadly, the cost is astronomical.  We will have to do fundraisers and tighten our belts.  The waitlists are also long.  I am choosing to trust if the Lord wants this to happen, it will.  Miracles happen and Hunter is a walking/talking miracle.  God is bigger than all the long lists and money issues.

All in all a good visit.  We keep things the same, for now.  There is a plan.  Oh, we will meet with a Neuro-Immunologist soon so we can have another doctor familiar with our case if need be.  The thing about that is, when Hunter gets sick, I call Neuro.  If he is bad sick, we go to Vanderbilt.  No more hospitals up here because they are not familiar with OMS.  If for some reason our doctor is not there, we need a backup.

Related Posts:

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Reflecting on Praising God in the Storm

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