Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

A Journey of Healing

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A Journey of Healing

I will only discuss this last leg of our journey as we step out of our finite “reasonable” box and into infinite faith.

Hope

Our journey is hard to explain without sounding like I live on another planet. So trust that God is good even when we don’t understand. That with Christ, all things are possible. HOPE. Here is a taste of what the Lord has been showing me.

Several years ago, my friend shared the story of her daughter’s journey with Lyme disease and how this place, this whack-a-doo treatment, and faith saved her daughter’s life. She tried to explain it to me, but I had no clue what she was talking about, so I listened, asked questions, and rejoiced in her daughter’s healing.

I have mentioned this place to several friends, who struggle with autoimmune issues, and I just put a bug in their ear, and then I give them Les’ number. Take the middle man out of it. I praise Jesus every January because that is when Les and her family stepped out on faith and tried something different than traditional medicine.

June 6, 2017

When H woke up from his nap on June 6, 2017, our lives changed forever. Our first dx was from a local hospital. In reality, a chigger should not EVER go there, but whatever. They diagnosed H with Strep, though he tested negative. “Give him these antibiotics, and he will be fine in 10 days.”

Uhm, did you get your degree from a Cracker Jack Box?

He cannot walk.

Hospital 2

We left and immediately drove to a children’s hospital out of state. We stayed there for several hours and then got the second dx. They said he had Cerebellitis. It is a common diagnosis when a child presents with the symptoms he presented with when we got there. The dr said it would run its course (virus type thing), and he should be better in 10 days.

Yep. That did not sit well with me.

 So, we made some calls to a friend who worked for a Neuro. Another friend has boatloads of experience with Neuros because her daughter has TM. Also, we talked to our parents and my sister (H’s Mamaw). Then we decided to take him to a different children’s hospital and see if that neuro agreed with the first neuro.

Hospital 3

We came home, spent the night, and then I got up early with H and headed to another hospital, alone, genuinely thinking this neuro would agree with the last neuro. Yep, that didn’t happen.

That was the beginning of our worst nightmare.

It is so easy to praise God when all is good in the world. When things are running smoothly, and all things are moving and grooving in a good flow. I picture my family and me sitting around a campfire singing Kumbaya. Then, you see your fire starting to go out, and it is getting cold outside, and you are frantically searching for anything and everything you can burn to get that fire back.

Before you know it, a bird flies overhead and pees on your ember. Your flame is gone, and you are sitting there, cold and in the dark. You think it can’t get much worse but have eaten that last s’more. Now you have no heat, light, or food. It is doable, sucky, but doable. Then the monsoon hits, and you feel like you will never be out of this space, and your fire will never come back.

Offical “Clinical” Diagnosis

Our official clinical diagnosis was made at another hospital. Sadly, there is no definitive test you can do. There is no amount of MRIs, LPs, blood work, X-rays, or EEGs. Nothing can officially say this is what you have. It is a combination of symptoms and what they equal up to after you test for everything else on the planet.

Opsoclonus Myoclonus Syndrome was 1 in 10 million. Once this diagnosis took hold, I did TONS of research. I joined a wonderful online support group and received encouragement and a wealth of information.

Protocol by Dr. Frank Pranzetelli

We started high-dose steroids while hospitalized. We also started our first of many IVIG treatments. IVIG was done monthly. Closely following coming home (in the hospital for about 12 days), we start Rituximab (a type of chemo). The total on that was about four treatments. Since those were not working, we moved to add in ACTH. Acthar (ACTH) is a shot that we give him daily. It is another type of steroid. We did this for about three mths. All this did was to MAGNIFY his rage, insomnia, and severe OCD tendencies. My sweet little boy was not there anymore. He was like a raging animal that always stayed in a fight or flight mode.

Second Opinion

I was getting a second opinion without permission! Dr. Lightner answered so many of my questions. She was open, honest, and forthright, and in-my-face wording helped me immensely. Dr. Lightner was a breath of fresh air, though I did not care what she said.

 She stated that H’s condition was more progressive. Dr. Lightner did not see the ocular flutter, which, to her, ruled out OMS. She wanted to run all the tests again. The previous test had been a year ago. Note that she was wrong. He did have OMS. H was assessed correctly and diagnosed at UPMC in Pittsburgh by the amazing Dr. Kavita Thakkar.

Part 2: Have You Ever Tried to Nail Jello to a Wall?

 All tests returned the same, and while he was at the hospital, the ocular flutter reappeared, making her believe that it was OMS (confusing, I know). So, in the end, we felt confident in this “clinical” diagnosis. She said, in her opinion, she would try the protocol again, but that is something I needed to discuss with our regular neuro, as she was confirming a diagnosis.

Zebra versus Okapi

In the medical field, a ZEBRA means an unlikely diagnostic possibility. It comes from an old saying used in teaching medical students. These students are taught how to think logically regarding the differential diagnosis: ‘When you hear hoofbeats, think of horses, not zebras.’ H was not a horse. We THOUGHT he was a zebra. Then, we discovered that he is NOT a zebra. He is an Okapi (incidentally my all-time favorite animal). They are incredibly rare.

 Unconventional Treatment

As we were finishing up an “unconventional” treatment plan for our son, we decided to give our family a bit of respite—SonRidge Health and Healing Center in St. Augustine, Florida. Dr. Marty Monahan took over the business with Jack Garvy retired.  

I have 11 people in my immediate family. Everyone is going in a different direction. We have one struggling with depression, one planning her life, and one who can’t keep her head above the waves. There is one who is ready to launch, one whose deficit and valley get larger and larger, and one who is stepping into puberty. Then there is the one who can either walk or not walk based on any given day and circumstances.

Add that to a mentally exhausted mama, an overworked daddy, and a strained marriage, and you see that we all needed new scenery.  5 Days After my Son’s Treatment.  

This Happened: My Boy is WALKING

My Boy is WALKING after three intensive days of therapy. I can’t even adequately verbalize my emotions. Amazingly, I watched him stand up by himself. As a result, this was a moment I will never forget. Then, because He is incredible, he RUNS to the ocean. I’m so thankful that I caught that on my camera. I got the best video; ironically, my camera attached a still shot. Yes, it is framed in my house. H, running to the ocean, carrying a stick. Fearless, confident, and strong. I’m amazed at God’s goodness. We still have a long road to go. Realistically, this is an unknown condition. God has healed him. We are just waiting for the complete manifestation of that healing in his little body.

Let’s Absorb

My Boy is WALKING!!!!!!!!!!! He is still shaky, but he is out of that damned wheelchair. Honestly, he does not even need the gait walker. He gets tired quickly, but when he is up, he runs. It is a miracle from God. I know that the stripes of Jesus have already healed him. Today, I have seen with my eyes instead of hearing with my ears.

Meet My Okapi Miracle

What a miraculous moment. God is always good, yet when you see your son walk unassisted for the first time in MONTHS.  You CHOOSE to give God the glory because He is the only one who deserves it.  God is writing H’s story. He has been writing since before He created the Earth.  I get to sit on the sidelines and enjoy the view.

He has all the provisions in place for H. For what he is dealing with and all trials that he is currently going through.  God is good. He is faithful.  Our family will heal. Our son WILL heal.  He is strong, kind, brave, and good. I will hold onto this moment for the rest of my life. My heart almost explodes every single time I see it.

He just got up, running to the ocean. The ocean is his haven and his safe place. The bathtub, not so much. The shower, not on your life. He is not even fond of the swimming pool.  When you see the ocean’s vastness, one would think he would be afraid. 

Fear. It is not in this boy’s vocabulary regarding the ocean.

He is simply fearless.

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