Medical Issues, Opsoclonus Myoclonus Syndrome

Annual Retesting for Opsoclonus Myoclonus Syndrome

Annual Retesting for Opsoclonus Myoclonus Syndrome

I dread hospital days. Usually, I start getting anxious about a week prior, and then it hits hard the day before. This time, I got a head start on packing, and I would pack light. Last time, I packed too many snacks and clothes. The first time (almost 4 yrs ago), I packed little to nothing for a two-week stay. I have one bag for both of our clothes, a book, and my slippers. Then, I packed my purse and had my little bag of bathroom things, essential oils, and electronics. One bag. One purse.

I’m ready.

Once I’m Ready

Then, I am ready. I have a coke in the fridge, water, and we are rolling. This time, however, was different. First, I was supposed to check in on Memorial Day. Doc said that we should put it off till Tuesday. Okay, fine. Adjustment.

Monday night, I went to do the pre-visit on Telehealth, and it had that I was SUPPOSED to come on Memorial Day. I messaged. No response. I called. No response. I messaged hours later. No response. Are you sensing a pattern?

My Whole Mojo was Thrown Off

Tuesday comes, and I start calling. Guess what? No response. I called admissions, and they said they had him down for coming Monday. There were no orders for him to be admitted on a Tuesday and not come (a long drive for me).

I messaged the office four times. I called three times. Then, I called admissions again. Finally, after my whole mojo was thrown off, we left at about 3 pm. It rained the entire way down, so that was an added fun element in the non-existent sun.

Getting in Our Room

We got settled, and a neuro doctor came in. She was letting me know what was going to be done. Then, we talked about his new or increasing symptoms of rage, OCD (or tics), vitiligo, and other things. I informed her that she needed to look at his last visit and whomever the two neuros were that took his cath out, they were not to get near my son. Her eyes widened.

Of course, this is a neuro I had never met, and she wasn’t aware of the plasmapheresis trauma. Tough. Just tough. I will say that our IV team (the team consisted of 1 person) was unbelievably phenomenal.

Blood Tests and Co-vid Test

He had a lot of blood drawn for several different tests. Also, he had a co-vid test which was HORRIBLE. He grabbed the stick, shoved it up to his nose more, and SCREAMED. Then, he broke it.

Good times.

Luckily, he slept well and was overall good.

Day 2 begins the round of testing.

Day 2

Today, geez. It started with someone scaring the crap out of me at 5 am. I slept on and off between 1 and 5. Well, we are up now. Neuro said that H tested positive for Co-Vid. There is some added fun.

Where on Earth?

I have no clue how this even happened. H has not been symptomatic at all. Honestly, he goes nowhere, so the people (my kids and husband) coming in and out of the house must have brought it in.

I asked for a day two retest, and they did. Guess what? It was positive too. Now, we are on another floor, in complete isolation. We are still getting testing done, but he will be moved to the last on the list.

Lots to Do

He is supposed to have an MRI and an LP (Lumbar Puncture) today, under sedation. If you have sedation, you can’t eat or drink. He is hungry and thirsty, which will make for an unhappy boy. His blood tests came back normal, except his iron is low. That is fixable. All the other doctors will be coming in today. Some stranger is peeking in his window and waving. Quite creepy if you ask me.

Positives and Negatives

Positive: People don’t bother us.

Negative: Co-vid. Grumpy child. Isolation.

Also, a HUGE negative is that we are now being discharged because he can’t be under sedation for 20 days. Bloodwork was done, and we got urine on him. The Rheumatologist and behavioral specialist will see him, BUT the most important thing is the MRI and the LP.

So, we have to come back in 20 days. The fun never ends.

So far, everyone else in my family has tested negative.

Day 3

As you might remember from yesterday’s post, lots of stuff happened. So many delays, a co-vid scare, and a tick on him are the highlights. Mix in being hungry, exhausted, and frustrated, and there you have our first (and only) 2-day stay at the hospital. Let’s talk OMS, shall we?

Opsoclonus Myoclonus Syndrome (OMS) is difficult to diagnose. It is easier when a child has a paraneoplastic type or neuroblastoma. Yet, being idiopathic is just a shot in the dark. Sadly, Vanderbilt has not done as well, in our opinion.

Is it God Speaking?

The 1-day screw-up or the 2-day delay was that God said, “stay home?” Nah, God hasn’t spoken to me in a while (in my opinion, not His). I press on, determined to get an answer with one of my many phone calls or messages.

We get there, and most go smoothly. We get to our room, and things start falling into place. Nurses come in and do their thing. We get the IV going, tests begin running, and questions are asked. You know, all the things. The co-vid test was a NIGHTMARE, but we got it done.

Is He Speaking Louder?

At 5 am, the neuro walked in to inform me that H tested positive for co-vid. I told her it had to be wrong because we had been nowhere. He has no symptoms. She said it was positive and that we were being transferred to the co-vid unit.

Excellent.

They decided to retest him at 530 am. Fun, I know. Regardless of the outcome of that test, the aliens came in and whisked him down to the “red-headed stepchild” ward. I kid you not; that’s what people call it.

My mom called and said, “Brandi, can’t you just go home?” I told her no because we needed these tests. That was my third warning and our second positive test.

In the Meantime

My family, back at home, is getting tested right and left. It’s a lot of people to get tested. Yet, once it was all said and done, everyone tested negative. It wasn’t surprising, and I still questioned whether or not the test was accurate.

Yet, we had an attentive resident who seemed to “see” me. We had a wonderful nurse who put H at ease in every aspect. I ignored all the warnings and second-guessed myself, and we pressed on again.

Final Say

He didn’t just give me signs, feelings, phone calls, and such. This time, He just said, “leave.” The powers that be came in and said there was nothing they could do for 20 days. We should go on home and come back.

That was loud and clear.

On Our Way Home

As I turned down the road home, rain began pouring down. My boy woke from a nap, it began to storm, and the sun’s rays shone down. I prayed for the Lord to give me a sign that all would be okay. I looked in my mirror and saw a HUGE double rainbow. It was glorious.

I had H turn around, telling him the story of Noah and the ark. H informed me that he knew all about the ark and the flood. We talked of salvation, the Holy Spirit, God’s promises, and such.

We turned on some praise and worship. H was raising his hands and singing so loudly to each song. It warms my heart to know that he has been through so much, and he still praises Jesus. I felt peace and warmth blow through my body.

By the way, H and I tested on the 3rd and are CO-VID FREE!

Maybe, God is moving.

 

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