Medical Issues, Opsoclonus Myoclonus Syndrome

Annual Retesting for Opsoclonus Myoclonus Syndrome

Annual Retesting for Opsoclonus Myoclonus Syndrome

Here is our Annual Retesting for Opsoclonus Myoclonus Syndrome post. 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.


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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Medical Issues, Opsoclonus Myoclonus Syndrome

The Journey with Plasmapheresis

The Journey with Plasmapheresis

The Journey with Plasmapheresis

This is The Journey with Plasmapheresis. Here we have been learning a new thing for the last few days. This is The Journey with Plasmapheresis. It is not something we had planned for right this second. We knew about it and talked with the doctor for a long time. I guess that time is now. I’m not sure what I expected. What I do know is that the Lord is with us. He is good all the time, and all the time, He is good.

“Plasmapheresis involves removing blood through a needle or catheter and circulating it through a machine where the blood is separated into red cells, white cells, platelets and plasma. The plasma, which is the fluid content of the blood, is discarded and replaced with a substitution fluid (mainly albumin solution).”

Frustration with the Doctor

H’s ataxia, behavior, and sleep have gotten a bit worse in the last few months. There has been a lot of frustration with my kids’ lack of attention to their conditions. One day, I snapped. I messaged the primary doctors and expressed my frustration. When you haven’t seen your patient in almost a year, don’t you think he needs to be seen?

I know Co-vid19 has wreaked havoc on everyone. Telehealth and phone visits with health care professionals are necessary for most cases. I get that; I do. Mostly, I enjoy it because I hate waiting forever in the waiting room.


Does that excuse not keeping up with a patient with an authentic and rare condition. I guess she got tired of reading emails asking her when she was going to see him, what has she researched, does she have anything that could help us.

Her “limited” experience is with OMS, which is related to neuroblastoma. She has one case of a non-neuroblastoma-related OMS…that’d be H. The regular protocol of IVIG, Rituximab, ACTH, Dex, and all those things did not work.

So, plasmapheresis (aka PLEX) was next up. It was either that or a stronger chem. The oncology neuro said that was pointless because HE DOESN’T HAVE CANCER. His B cells have been depleted and come back and don’t play well with others.

It is so confusing.

Day 1

It wasn’t horrible but not the most fun day either. We dealt with the same ER dr, so that was nice. She is on neuro and remembers us from the MANY times we’ve been through the ER. His sedation team was excellent. That got the cath placed, and it was, of course, traumatic, but once we touched all the things and examined them, he was a bit better.

The exchange was LOUD, and it took about 3 hours each. For the most part, it was painless. I mean, he was agitated, but who wouldn’t be? His nurses, as always, were stellar. We only encountered one nurse that, well, that nurse came and went without a word and did not return to our room. That was on day two, though.

All in all, it was an educating type of day. I am learning new things.

Day 2

Let the suck fest begin. Dr. VanderVorte, yep, no words for that doctor; that experience was awful. He needs a new profession. Not very bright or helpful. I had hope for him on day one, but it got worse as we progressed with the exchange.

H is VERY in tune with his body. When he has had IVIG, he always has Benadryl, Hydrocort, and Tylenol. It is to help offset any reaction. During this time with IVIG, he began to have an adverse reaction to Hydrocort. It made, what H says, his penis burn and feel like it was on fire. He thrashes, grabs, and screams until I get in his face by laying on him.

We talk, and I rub his face while they give him Tylenol. Once I can get him to relax, he goes to sleep, and the pain is gone. We no longer use hydrocort. I thought that would be the end of the saga. Alas, I was wrong.


Once the Benadryl hit his bloodstream, he began thrashing, grabbing, and screaming. It is more difficult now because he has an IV and a giant cath in his neck. I couldn’t lay on him, so I had to do more of an arm restraint which scared him.

I told the nurse that he needed Tylenol immediately. She just stood there and watched this all play out. I told her to help him because she had Tylenol. She did nothing. The dr said that he didn’t know the problem and couldn’t fix anything or help him either. He was there to check for his cath.

I mean, he is a dr. I told him what to do. So, I hung my head out the door and screamed for the floor nurse. She came flying in while I was restraining H and immediately TRIED to take action. Only the cath nurse stopped her and told her it WAS A PARENTING ISSUE, AND HE WAS FINE THAT IT WAS ME THAT HAD THE PROBLEM.

That cath nurse didn’t come back. He got Tylenol, and he slept.

Day 3

We were ALL on edge. This time no hydrocort, no Benadryl, his dipwit cath dr didn’t come back, he sent his colleague (excellent), and his regular neuro didn’t have the time to walk across the hall to check on him.

The nurse that came in to do his exchange is the father-in-law of Katie Davis Majors from Kisses from Katie. I mean, Jesus knew I needed this moment. We talked about his condition, what we had been through this current week, and where my mind was, and he was nothing but encouraging and kind.

It was a good day.

Day 4

Day 4 was also a good day. We were in a flow. The nurses were excellent, but his neuro was useless; he never showed up. He ate well, slept well, and we were ready to be done the next day. The end was in sight.

During the night, I noticed he had a slight cough. Nothing big, almost like you have dust in your throat. Upon checking, he had coughed his catheter loose, and blood was everywhere. So, in the middle of the night, an X-Ray had to come in and ensure it was still where it was supposed to be. Then, we had to reposition and retape it. To add to the fun, his IV stopped working, and a new one had to be placed.

Good times.

Day 5

And this is the day that nightmares are made of for me. It started well. I had already packed our stuff and was ready to roll. There was an exchange to be done. Once that was done, it would be removed, and we would be released.

The exchange went normal. For those curious, this machine pulls out all of H’s blood and washes it. It separates the blood from the plasma. We dispose of his plasma and replace it with donor plasma. It’d be cool if it weren’t being done to my son.

Once everything was done, we had to wait for the neuro to come and pull his catheter. Pulling the catheter out is a delicate little dance that has to be done. The tape is usually the worse thing for H, so we were all super gentle in taking the tape off of him.

There were 2 euros. I will refer to them as Twiddle Dee and Twiddle Dum. I am pretty confident they either got fired or quit after this exchange. In the removal process, H had to lay still. H had to do so with his head turned opposite to where his cath was placed. Then he had to inhale and whistle.

*Seriously, he is 7.*

They both turned THEIR heads and began to whistle WHILE NOT PAYING ATTENTION to what they were doing. I was trying to keep H still because he was terrified. He did all the things, and they got it out. Next up was holding FIRM pressure for 15 minutes because of the massive gaping hole.

Within about 1 minute, H started screaming, crying, thrashing, and clawing at his chest. The look in his eyes was that of straight fear and pain. He was screaming, “mommy help me, mommy help me, my heart is burning, my heart is burning!” Then began coughing, and they were still trying to hold him down.

He was cold and clammy but sweating profusely. Also, he was retracting his stomach, trying to breathe, begging for anyone to help him. I was trying to talk to him calmly and tell him that I was there and it was okay to be scared and to use his words so we could help him.

It was Horrible

His pupils were pinpoints. He struggled with breathing, retracting, screaming, and saying that his heart was on fire. Then, he started clawing at his IV, chest, me, and whoever he could get his fingernails on. I screamed for the doctors (who WERE STANDING THERE DOING NOTHING AT THIS POINT) to help him.

They said that it was a “parenting issue” and that he was fine, and they would step out of the room so I could control my child. I lost my shit in more ways than one. I held onto him with one hand, stuck my leg out to PREVENT them from leaving, and told them that if they didn’t help my child, I would cause them tremendous physical harm. The reaction H was having was not a parenting issue; this was a medical issue, and they were going to fix my child, or hell would come after them.

About that time, H vomited black bile, stood up in the bed, screamed again, and then went completely limp in my arms. He would not wake up, would not respond to any external stimuli, and no one could wake him. Drs started flying in because they heard him screaming, me screaming, nurses screaming.

No one did a thing.

No. One. Did. A. Thing.

They all just stood there and looked at him. No one could get him up. H was like this for at least 15 minutes. Finally, his breathing went back to normal, and he started to stir. He was so weak he couldn’t hold his head up.

They took an x-ray of his chest and said they saw nothing and RELEASED US. The same idiot neuros who screwed up looked at the X-rays. I was so mad, I couldn’t even speak. The nurse was precious. She just sat, held him, held me, and had me go to the car to get some air. Then she assured me that he was safe with her. She never left his side or my side. She was as appalled as I.

We get an hour and a half on the road, and the IDIOT dr calls and says, “turn around, come back through the ER; when we pulled the cath, the liquid drained in his lungs, and he has pneumonia. I didn’t look close enough when I told you to leave.”

Are you kidding me, you stupid human? I refused to go because A) I would hurt that person B) I would smile in my mugshot, C) We were closer to our local hospital D) we went there and did not get home until midnight.

My Son

He is a warrior. My son has Job’s strength and King Saul’s wisdom and is a friend of God like David. He amazes me in every single way. God has great plans for him. He is going to heal him in HIS time and in HIS way. We will scream our story from the rooftops to help someone else who blindly thinks doctors know everything.

Let me tell you something; I am this child’s leading expert. I know everything about him and everything about his condition. I will never let anyone speak to me again. Ever. I will always speak up and let H use HIS words to express how HE wants to be cared for at any time or place.

God will be glorified. Can you tell why this has taken me almost a year to post? I have had this in my drafts since February. It takes time to heal and process when you think your son has died in your arms.

He heals by retelling his story over and over. I fill in the blanks where he can’t remember. I tell him everything using big words, and I clarify when necessary. This child. He is BRILLIANT and RESILIENT and a FREAKING ROCKSTAR.

Medical Issues, Opsoclonus Myoclonus Syndrome

Good Times Never Seemed so Good

Good Times Never Seemed so GoodGood Times Never Seemed so Good

In Good Times Never Seemed so Good, I will outline our next round of “guess H’s diagnosis.” It’s a fun game set to Neil Diamond’s “Sweet Caroline.” After almost 5 years, let’s see who can guess what diagnosis we are going to get! It’s been a nail-biter over the years, but I feel like someone is getting closer to winning the game. Why does Neil Diamond’s “Sweet Caroline” come to mind? I simply don’t know. There is so much I don’t know, though.

Happenings as of Late

Our neuro has gracefully exited stage left with us. After our PLEX experience, Dr. James feels like she has done all she can do. Honestly, that wasn’t much, so I’m not too sad about it. We still need to find someone new, but I’d rather eat thumbtacks.

We have a Geneticist and a Movement Disorder doctor. They know nothing, either. Our Geneticist has requested a lot of bloodwork, which we’ve done. They also wanted a new level of testing since no one had done anything since this started.

Since all his genetic testing has come back clean, and we cannot get swabs from bio parents, we have to go a different route. So, we are redoing all of his tests. I am not opposed to that because he hasn’t had them done in about 3 years. If any doctor was worth their weight, we would have this testing done every year.

But let’s face it, they don’t care.

Coming Up

H will have a Lumbar puncture to check his opening pressure and see if he still has more or has fewer Oligoclonal bands. The last time he did this, his opening pressure was high, and he had 5 bands.

Does anyone know what to do with that information?

Hell no.

No one knows anything.

With that LP, he has his MRI, MRS, MIBG, and a CT Scan. This is to check his cerebellum and see if any tumors have popped up. Once we get all this information, they want us to get involved or apply to the UDN.

That is the Undiagnosed Network. Basically, all these doctors do is rare study things and give something that doesn’t have a name…a name. Possibly, again, it isn’t OMS because he has been medicinal resistant.

No one knows anything. Do you know how many doctors we have seen? I can’t even.

As We are Driving to Nashville

I get a call as I turn the corner to be in the city. It is the surgical nurse calling me to RESCHEDULE his surgery. I thought I was going to implode. Though I knew this sweet woman had nothing to do with anything, I was going to light into her.

I refrained. Her job is tough, and she is the one that takes the anger, while the doctors are the ones who get no words spoken to them because they are “gods,” and people are scared to say anything crosses to them.

However, I am not too scared. I’m so sick of being talked at, talked around in circles, lame excuses, no shows…I’m done. This is my 7 yr old life. He is not a toy to be tossed around like a hot potato.

I explained that we had just driven almost 3 hours and were in town. That not doing the procedures was not going to be an option. After about an hour, the nurse called again and said that another doctor would be doing the procedure.

So Here We Go Again

He has eaten and watched more tv than usual. He is tucked into bed, and we wait until morning. I know the information is necessary; I am so tired of him being poked and prodded.

We are waiting for those results; he was tested for Celiac Disease, so maybe somebody can figure something out. Or, perhaps, I just need to stop…take a year off…let him grow and heal and tell everyone to dirty word off.