Tag: dr. kavita thakkar

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

A Journey of Healing

Barefoot Faith Journey

A Journey of Healing

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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Medical Issues, Opsoclonus Myoclonus Syndrome

Let Us Marinate

Barefoot Faith Journey

Let Us Marinate

Let Us Marinate

 

Let Us Marinate on the picture. Open it up, enlarge it and just look. This canvas is a 16×20, and there is NO room left to put ANY type of bead. Beads of Courage is defined as “Every time a bead is given, courage is honored, suffering is alleviated, resilience is strengthened, and the experience of human caring is affirmed. Every Bead of Courage Program integrates the use of beads, the earliest art form known to humans, as visible, tangible symbols of human experiences that need and deserve to be expressed.”

This is my youngest son’s canvas of all of his beads. We kept them, for the longest time, on strings. The strings didn’t hold up, so we were able to get 2 beautifully hand-crafted wooden boxes that were overflowing. So, one day, I thought…let’s see what I can come up with. What I ignored was the WEIGHT of this thing. There is no way a nail can hold this thing up. We may have to prop it up or use 2 nails and a wire…it is heavy!

Each Bead

You will notice that there are different types of beads. Each bead is indicative of a procedure/therapy/accomplishment/etc. that the child has done. I will say, H did not earn any beads for the first 3 years of his disease. This was because BOC was a program for terminally ill children or children with cancer. I believe there was also, at his hospital, a cardiac program. When we moved hospitals, the requirements changed. Now, BOC includes those children/young adults with life-altering conditions. So, these are the beads he has earned in the last 2 years. Can you even imagine if we were to go back and get them for the first 3 years??!!

Oval Type Beads

Orange (too many to count)

Central Line (PICC), Broviac, Port, Midline, IJ, Pheresis Catheter Placement & Removal

Blue (too many to count)

Clinic Visit

Dark Green (0)

Dialysis, TPN, NPO

Gray (too many to count)

Dressing Change, Central Line, Osteotomy, Trach, Surgery Site, Others, & Skin Care

Glow in the Dark (2)

Echocardiogram

Magenta (too many to count)

Emergency, Unusual Occurrence, Seizure, Emergency Transportation

Light Blue (too many to count)

Eye Exam, Eye Drops, mouth Care related to Treatment

Glass Star (20)

General Surgery

Brown and Face Bead (2)

Hair Loss, Hair Growth

Lime (several)

Isolation Precautions, Fever, Neutropenia

Purple (too many to count)

IV Infusions (One bead per day or initiation & Discontinuation)

White (too many to count)

Learning New Medications, Parent Education

Beige (too many to count)

Nutrition & Diet Transitions

Yellow (too many to count)

Overnight Stay in Hospital (one bead per day)

Black (too many to count)

Pokes, IV starts, blood draws, subq & IM injections, port access, suture placement.

Tortoise (too many to count)

Procedures include Cath lab, biopsy, LP, casting, scope, shunt tap, IR, wound care, EVD, joint injections, aspirations, and others.

Pink (too many to count)

Respiratory support, sedation, anesthesia, ventilator

Silver Star (14)

Suture Removal, Staple Removal

Light Green (too many to count)

Test, Scans, CT, MRI, X-Ray, EKG, EEG, PFT, PET, US, BE, UGI, Nucl. Meds, Others

Rainbow (250)

Therapy, support staff visits (PT, OT, SLP), Others

Red (5)

Transfusions, Blood products, Pheresis

Aqua (a bunch)

Tube, Catheter Placement & Removal, NG, NJ, G-tube, Chest Tube, Foley, Drain, Others

Papa Beads (too many to count)

He got this from his Papa’s private collection. These beads are SO precious to me.

Special Beads

Handmade Glass Selection (68)

Acts of Courage, Treatment-related Milestones

Square Heart (3)

Admission or Transfer to Intensive Care Unit

BOC Signature Heart (2)

Completion of Treatment, Transfer to Adult Services

Ceramic Special Selection (50)

Independent self or parent giving infusions or injections, Following medication schedule, Special accomplishment, Recognition of Personal or Family Accomplishment

Bumpy (52)

Medication Challenges, Taking, learning, self or parent giving infusion or injection, Mobility Challenges, lying flat, bed rest, crutches, splint, wheelchair, 1st walk after surgery, other.

Fish (60)

Transfer units or facilities, long-distance travel for care, “upstream battle.”

Transplant Glass Selection (24)

Transplant

Member’s Choice (15)

Discharge from hospital

Let it ALL Sink In

This child, who got sick on June 6, 2017, had WAY more procedures, pokes, traveling, transplants, and all than he has had in the last 2 years. This canvas is only the last 2 years of the 5 he has had since he has gotten sick.

Resiliency.

He is fantastic, brilliant, strong, capable, and able, and now he is HEALED. I never thought I would say that word concerning H, but here we are saying it loud and proud for all to hear. God is good. I didn’t think He was good. Honestly, I wondered if He even existed sometimes. Yet, I had warriors all around us that held up my arms and faithfully prayed for my son. They were my faith when I had none.

My Theme Verse

Romans 4:18-21 Against all hope, Abraham in hope believed…Yet he did not waver through unbelief regarding the promise of God but was strengthened in his faith and gave glory to God, 21 being fully persuaded that God had the power to do what he had promised.

Take that OMS!

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Beads of Courage

Barefoot Faith Journey

Beads of Courage

Beads of Courage

We have been trying to get Beads of Courage since this journey began two years ago. I first learned about them from a fellow blog mom Renee’s Little Earthling Blog. Her son’s story was where I read about it.

Norton’s Children’s Hospital

We approached a nurse at the 3rd hospital, Norton’s Children’s Hospital, and she sent in the floor Child Life Worker to talk to me. This was H’s two-day IVIG/Chemo time at the hospital. We had to fill out a form to see if he qualified. There are certain conditions that a child has to have to qualify.

Cancer and Blood Disorders

Cardiac Conditions

Burn injuries

Neonatal ICU Families

Chronic Illness

Do We Qualify or Not?

 

In assuming we qualified, we had to go through a list of procedures. We had to count how many of each category H had from the past to the present—a daunting task. I sat for those two days, and I counted. I read lots of med reports and looked through my calendar to remember. H deserved every single bead because of all that he had been through with this illness.

As I painstakingly remembered and documented, I returned the document to the Child Life worker at Norton’s. We never heard another thing from them. They said he didn’t get to participate in this program at their facility because he didn’t have cancer.

Moving On

I never approached UK Children’s Hospital and UPMC about the Beads of Courage because I figured they wouldn’t let him participate either. The thought passed through my head a few times, but I let it flit on through.

Yesterday, at Vanderbilt Children’s Hospital, the thought came back up. I saw this honey of a boy walkthrough with a smile on his face from ear to ear. He was proud and excited. Yes, he was facing a long chemo day, which is problematic. Yet, he could take some time and string each bead on his necklace. As I saw that, I thought I would ask again.

New Day, New Hospital

Katie, our Child Life worker, came bopping over and said she was fixing to talk to us about this opportunity. I told her what had happened in the past. She just said that H qualified. Since we were never given the opportunity, things had changed slightly in 2 years.

She gave me the form (below), and I just checked everything he has done over the last two years. On the back, I wrote down the things that required great bravery: unique beads. Then, we calculated the days he had been sick. He received beads for every 100 days he was ill.

H’s Choice

H got to pick out a bag made by a woman in Arizona. He carefully chose each bead as Katie explained why he was getting it. That was not so much on his hearing level LOL. He just wanted to select the prettiest bead.

Beads aren’t the be-all and end-all, but it is something that he can know is consistent. Hospitals are not consistent. You have different nurses, different techniques, and different reasons we are there. Beads are colorful, bright, and exciting to kids. The BOC brings joy. He can sit and look at each and know that he did something amazing. He took steps to better himself and his health. He is strong.

When we all returned, I sat and looked through all the beads. I read the reasons why and then A did the same thing. She helped him sort them all out. He sat and strung each bead one by one.

Pure Joy

He was excited about the beads. I have seen some fantastic ideas on how to display them online. He earned three more yesterday, but we will get them on clinic day next month. He needs another 100-day bead, a stick bead, and a clinic visit bead. We will add it to his bag and string it when we get home.

Donate

You can always donate towards Beads of Courage anytime. The website I have highlighted above has a tab about donations of money or beads. The Predators donate money towards this program for Vandy. It gives you the chance to put a smile on a kid’s face.