Medical Issues, Opsoclonus Myoclonus Syndrome

The Key to a Successful IV

The Key to a Successful IV

The Key to a Successful IV

Here is The Key to a Successful IV. Friends, neighbors, countrymen, lend me your eyes. We have figured it out! A couple of months ago, H got a slight cold. In a healthy child, that would look like a low-grade fever, snot, cough, or just feeling yucky altogether. In an OMS child, however, it is a different ballgame.

Flare-Up 101

A cold spells trouble when you have a child with OMS, which you likely do not because it is 1 in 5 million:

  1. I noticed his eye turning in slightly.
  2. I saw a slight cough.
  3. I noticed he couldn’t hold a pencil, fork, or work legos.
  4. He would be standing up, with nothing touching him, and he would suddenly fall over.

This can last for the duration of the fever, or it can last for an extended period. Not every cold (God willing) will lead to this, but it likely will. So, tremors began, and fear set up camp in my spirit.

ER Visit

We were not due for IVIG when he got this little cold. Sadly, we get it in the chemo ward of the hospital, so if he has any signs of anything, he can’t come for fear of getting another child sick.

We set off to the ER. His dr was aware, though she made no contact with us during his illness, ER visit, or stay. That will be addressed at his next appointment because that was not okay. Also, I called the ER and told them I was on my way and what was going on with him.

Upon Arrival

We didn’t even get triaged. They quickly went through some basic things and got us into a room almost immediately. The nurses couldn’t even look at his chart because the on-call neuro looked it over. We were very pleased with our ER visit and the diligence and kindness each person showed us.

Decision of Admission

The neuro team decided to admit him for IVIG. The decision didn’t surprise me, but I dreaded the IV part. H has some pretty severe PTSD because of all of this. There are no amount of distractions that can prevent him from screaming his head off. Though, they have tried and tried over the last 2.5 years. It is almost always a nightmare.

The nurse came in, and I immediately apologized for what was happening. She understood and told me not to worry. I told her he was scared of white jackets, stethoscopes, gloves, cleaning stuff, and a rubber band. She smiled and said no problem.

Then Magic Happened

She took off her coat and stethoscope and informed her helpers to do so. As they entered the room, she asked me to watch her and her helpers thoroughly clean and sanitize their hands.

Then, she put in his IV with NO TEARS and NO SCREAMING, like zero. He even watched. It was the most bizarre thing I have ever seen. He thrashes and screams as soon as he is touched. Yet, this time, nothing.

Fast Forward to Not One but Two IVIG Treatments

In the last treatment and this one, I have asked that they not wear gloves. I wanted to see if it was just a fluke. Guess what? It isn’t a fluke! He has not made a sound when he gets his IV in. It is the most fantastic phenomenon ever. Those parents with medically fragile kids will understand how exciting this is for me!

We have our IVIG routine down pat, though it is not our favorite thing to do in the world. I wish he were well, but he is alive, and I will take that any day of the week and twice on Sunday!


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