Medical Issues, Opsoclonus Myoclonus Syndrome

New Video from NORD

New Video from NORD

New Video from NORD

Here is a brand New Video from NORD. For those who have no clue what NORD is…it is the National Organization for Rare Disorders. This site does not have run-of-the-mill type of conditions. By “run of the mill,” I mean those diagnosed frequently.

Awareness

This site is all of the hardcore, rare, little to no treatment type of condition. I am very excited that Mike Michaelis and his team have worked hard on the OMS Life Foundation.

Who DOES NOT buy things from Amazon? If you do, you can go to Amazon Smile and make all your purchases there. It is the same as Amazon, only this time, a percentage of what you buy goes to a charitable donation.

Amazon Smile does not cost you a dime:

  1. Choose your charitable organization and type in “OMSLife Foundation” (in Cypress, TX).
  2. Select that option.
  3. Anything you spend will help the foundation raise money and increase awareness of H’s condition.

NORD Rare Disease Video Library

“The NORD Rare Disease Video Library houses educational videos on rare diseases for patients, caregivers, students, professionals, and the public. NORD works with medical experts and patient organizations to develop the videos, which are made possible by individual donations, educational grants, and corporate sponsorship. NORD is solely responsible for the content.”

All About Opsoclonus Myoclonus Syndrome

All About OMS

If you click on the above link, it will take you to an awesome video that explains OMS very simply. All the things in my head have formed into a video. I am pleased as punch for them to highlight this condition.

OMS is not a “money maker” because it is so rare. That means funding and research are not done because there is nothing for big pharmaceutical companies to make. These kids are like human experiments. It is all trial and error.

Let’s bring light and awareness to this condition and help kids get a PROPER diagnosis and begin proper treatment. I don’t want another family to deal with everything H has.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Reflecting on an Anniversary I Would Rather Ignore

Reflecting on an Anniversary I Would Rather Ignore.  It has been 5 years.  So much is the same, yet so much has changed.

But, on this day,

Dys- Learning Disabilities

Our Lives Changed Forever

Anniversary I Would Rather Ignore.

What began as a somewhat normal day.

Turned into……

A nightmare.

Get up at 8:15 am

G got H up and ready to eat breakfast.

He ate normally.

Noticed he was a bit needy.

He wanted to be in my lap, at all times.

He was a bit whiny.

The boys saved me and took him to their room to play with Legos.

That lasted for 10 minutes.

I kept hearing N say “buddy, you are not in trouble…why are you shaking and screaming?”

I called him back into the dining room.

We snuggled.

He still was throwing a fit.

I had him sit on the step to calm down.

As he shook, he cried.

I told him to stop shaking and he could get up.

He stopped.

He ate lunch.

N put him down for a nap at 12:30

We were all relieved because we would have no screaming time.

At 4:15, we got him up.

He was carried downstairs (as normal) and put in my lap.

We snuggled until he woke up.

I told him he needed to sit on the potty (5 steps away).

I put him on the floor.

He screamed.

He Fell

I thought his legs were asleep, so I picked him up and rubbed his legs.

After about 5 minutes, I put him back down to go to the potty.

He fell again.

Concern began to enter my throat from the depths of my toes.

I had N go across the room (about 10 steps away) and I had H walk to him.

He wobbled like he was drunk, cried, shook, and fell.

A Year Ago Today

That’s when I knew……

Our lives would be forever changed.

Please pray for a miracle.

Romans 4:18a “Even when there was no reason for hope, Abraham kept hoping—believing….”

Romans 4:20-21 “Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever he promises.”

Jeremiah 29:11 “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

2 Years Ago Today

He walks, unassisted.

We had our wheelchair ramp removed.

He can ride a tricycle.

Most of the time, he can feed himself.

He struggles with this speech.

Also, with behavior.

Wobbly legs, but better.

Shaky arms/hands are still troublesome.

He runs.

The Meds are working.

God is good.

We have come a long way, but there is still a long way to go.

 

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Little Lies Along the Way = Fear Amongst Children

Little Lies Along the Way = Fear Amongst Children

Little Lies Along the Way = Fear Amongst Children. Before I move on, I want to say I have MAD respect for nurses, nurse’s aides, child life people, and all the other “worker bees” in the hospital.

Respect.  These are fantastic and under-appreciated people.

With that being said, I have learned a lot of things over the last ten mths of H’s illness. I know the heart behind these statements. I see the ease these sweet nurses are trying to give these kids. Yet with my kid, you aren’t helping much.

Things We Heard

  • Let’s give your arm a hug (preparing to take bp)
  • Let’s clean off your germies (preparing for an IV)
  • It isn’t going to hurt. We are just going to put a straw in your hand/arm (placing the IV)
  • We are going to go downstairs, and they are going to give you a special medicine to help you take a nap (putting under for sedation)
  • Let’s tickle your armpit (taking temperature)
  • Is there a bunny rabbit in your ear (checking ear)
  • Let’s see if you have a heart (checking heartbeat)
  • This is going to squeeze your arm just a little bit (tourniquet for IV)
  • This is going to sound like a rocket ship (the numbing thing that scares the crap out of me)
  • Let’s give your arm a drink (flushing the IV)
  • Let’s take some happy juice (something to calm them before sedation)
  • We are going to go downstairs, and you can take a nap while we take pictures in a giant donut (MRI)

In the beginning, these statements I got.

I understood. I accepted. I even played along until I began seeing small H changes and extreme fear. He resisted “hugs,” afraid of loud noises (rocketship), would spit his water out when he drank from a straw, and when we came to the hospital, he would FREAK out.

If I had a rare hospital visit or stay for my kids, which I have had in the past, I wouldn’t hesitate to do this.  For minor things, I get it.  Saying these things helps kids overcome their fear.  Yet, when you have a child who is in the hospital all the time, it doesn’t work.

H stopped using straws.  He stopped drinking juice or most liquid.  H didn’t want to ever eat a donut even if he saw me eating one.  He resisted hugs.  Tickling him is a thing of the past.  He associated all these good things with fear and hospitals.

I know I come across as this hard mom who is using too technical terms with my 4 yr old, but this is his life. Hospital life is his new normal. Hospitals. In and out of hospitals and doctor’s offices. I have changed my tune during the past few doctors and hospital visits. For instance, this morning, H had to have an MRI done and a spinal tap.

Child Life

Child life came upstairs to talk and play with him until he was sedated and went back for his procedure. They brought this fantastic doll with a hospital gown, markers to draw on his face and pretend medical equipment so he could play with it.

They began using those terms, and I kindly told them I used accurate terminology with him. I discussed with them his irritational fears over things, and because of my lack of knowledge and the previous nurses trying to put him at ease, with what I’m assuming they have learned, we have changed how we deal with things. I also explained that he likes to be called Kid.

The Doll

So, we got out the doll, and I taught the Child Life people and the nurses how we do things. We first drew a face, hair, glasses, freckles, belly button, and chest/back hair on his doll. Then, I drew some veins on his hand. I showed him his veins and my veins. I talked to him about the IV going in and what it does. The funny thing is he knew what most of the stuff did because we have talked about this so much.

We took a wipe and cleaned the area. We counted to 5 and then “inserted” the IV…we even used the same tape they used on him. We flushed Bob’s IV when H got his IV flushed. We even put the sterilizing cap on the end. I covered everything I could think of on Bob.

Astonishment

The ladies were in awe of how H responded, how much he knew, and how I chose to handle things with him (I understand other parents using the above terminology). I explained to them that he has a life-altering condition, and this is now a part of his life. I wanted to take the fear out of the unknown and normalize his situation for him. To take the worry away, I want him to be a student (even at this age) of what is going on in his body. Doing that gives him some control.

This has been a scream-free hospital stay. H has been compliant, polite, and confident. I’m so incredibly proud of him. I cannot even describe how much this baby inspires me to continue to run the race looking forward.

 

 

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

A Journey of Healing

presentation1

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.

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

My Ache of Reality

Before He Got Sick

My Ache of Reality

 

My Ache of Reality

In My Ache of Reality, my heart physically hurts. There are moments when I see myself going about my day. Then, all of a sudden, tears begin to flow freely. I am not in control of this onset of emotions, sadly. If I were in control, I’d stifle those suckers instantly. It is uncontrollable and unexpected. I do not enjoy these moments.

 

H is better, for the most part. He is still walking most days. There are some foods that H can feed himself. There are days when he can hold a pencil (with assistance). On a good day, H can sit on the potty (almost by himself). All of these things, he can do part ways. Also, there are things he can do, all the way, occasionally. Every day is a day and every day is different. I never know what to expect day in and day out.

Remembering

What spurred these emotions on was sorting through my external hard drive one day. I organized the 10s of thousands of pictures I have had since 1994. Looking through my photos/videos of 2015 and 2016, I began to feel the heaviness. See, in November 2015, H moved in with our family.

 

He was “normal” that morning, on June 6, 2017. Then, after lunch, he took a nap, and our lives changed forever. I remember calling my sister (his Mamaw) and saying, “Kim, there is something wrong with the baby. He can’t walk. We are headed to the ER.” She met us there. From that moment on, it was a whirlwind for the next two weeks. I had almost two years of him being a healthy, typical little boy.

 

I Don’t Remember

 

Those healthy days, I don’t remember. How sad is that? He does not remember it either; that is even sadder to me. This realization cuts me to the core because I do not know what our future holds; on the flip side, I know Who has his future. It can be so scary to even think about. Will he ever walk without assistance? Will he ever feed himself? Dress? Do schoolwork? Go to college? Have a family? Hold a job? I know he is only 4.5 years old, but time marches on now, doesn’t it.

 

I find myself questioning God and the why’s of it all. H had already endured *so* much in his little life before coming to us. He saw so much hurt, pain, violence, neglect, and now this. Why can’t he be? Why can’t he live everyday life? What more does this baby have to go through?

 

Then, I hear this one question rolling through my mind, like on a carousel.

“If I never heal him, this side of heaven…will you still love me?”

 

That question is so easy, yet so hard. It is easy because, of course, I will still love Him. He is my Savior and my foundation. The knowledge that He is my Alpha and Omega is overwhelming. I want my son to be healed, this side of heaven, and to be okay. I desire to see him have a full, healthy future. The reality is, is I don’t know what his future holds, and it makes me angry.

 

Anger is secondary to fear and sadness. I fear that I will lose my son. There is a fear of people making fun of him, him getting hurt, or having to go back to the hospital. I am sad because there is no treatment. There is no medication, no protocol, no help, or knowledge available. Fear and sadness could overwhelm me if I allowed them to. In having a propensity to depression, I have to be mindful of my mental state in all of this.

 

Anger

 

I’ve been super angry with Jesus through all of this. My love for Him has not changed, but I am mad (remember, fear/sadness). Last night, we had a meeting…Jesus and me. This meeting happened after Big Daddy prayed over me, and I was fixing to go to bed. There was a lot of yelling, mainly (entirely) because I had to get this all out.

 

When I came out of the bathroom, I saw my still son, sleeping peacefully. I sat by his bed and held his little hand. There were no words spoken and no thoughts in my head. I sat there in silence, staring at him and holding his hand.

The Ache of Reality

There was so much said, so many tears that fell, and finally, peace. I can officially say, not just with head knowledge but heart knowledge, that I will still love my Jesus. Being alive has brought together our family in a way I never dreamed it would come together. Our tribe has come together and rallied.

 

There is a relationship between my brother and me. That never existed before. The love my brother has shown my baby is mind-blowing. My sister and I function as a unit instead of separately. That began before H even moved in with us but has grown stronger by the day. My other sister has faithfully helped by providing pull-ups to being a massive prayer warrior. My parents…I can’t even. The support and love that has been shown affect every fiber of my being.

 

H has shown people perseverance in the face of pain and uncertainty. It melts your heart when he smiles after IVs, chemo, IVIG, ACTH shots, traveling for hours/days, and extended hospital stays. There may be a moment when he cries, but then he tells whomever, “thank you.” Amazingly, he has shown grace through his misdiagnosis and tenacity in his ability to compensate for his deficits.

Hope

It has been prophesied over me, my family, and H’s healing. I have learned that, in Christ, H is completely healed. The power of my words and the words that surround H is just that, mighty. I can hear the medical truth yet still know that he is healed. The Holy Spirit, in me, allows me to pray and thank God for the healing He has already done for H. HOPE is the keyword in our journey. I have HOPE in the circumstances that we are going through. This HOPE can only be found in the arms of my Jesus.

 

I’m thankful for the people that speak that healing into existence. That healing is Truth from the Almighty. They remind me of what the Lord has shown them, and they tell me. These are the words that I need to hear because they come when I feel like hope is dwindling.

Snuggling

As we snuggled in bed last night, I asked him if he would be better. I didn’t allude to his illness or anything else. I thought he would respond according to his behavior because it has been less than stellar. He looked up at me and said, “Yes.” He said, “I’m going to stop shaking.”

 

H has hope. Therefore, I have hope. We know on Whom our HOPE is built.

My Hope is Built on Nothing Less

My hope is built on nothing less
Than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

His oath, His covenant, and blood
Support me in the whelming flood;
When every earthly prop gives way,
He then is all my Hope and Stay.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

When He shall come with trumpet sound,
Oh, may I then in Him be found,
Clothed in His righteousness alone,
Faultless to stand before the throne!
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Time to Get Over Ourselves

Time to Get Over Ourselves

2 Day Hospital Stay

In this post, Time to Get Over Ourselves, H, A, and I have been at Vanderbilt Children’s Hospital for two days for his infusion. This is the hospital that misdiagnosed him the second time. Now, after 2 yrs, we have found a specialist who has seen his condition.

Now, she has not seen a lot of cases, but at least some. She is willing to learn as we go, and she talks WITH me, not AT me. The last time I checked, I was H’s expert. She respects that, and I appreciate that.

Infusion Time

This is our first infusion at this hospital. It is pretty different from the last three hospitals we have had infusions in. All three other places (Norton’s, UK Children’s, and UPMC) have done one full day of IVIG. We have always had a private room and meal services. That was nice.

Here, however, is a WAY different ball of wax. We are in the cancer infusion section. It is one large room with about 12 of those hospital reclining chairs. Each person comes in and grabs a seat. There are private rooms, but that is for different cases.

As I Look Around

As I look around, I see these children that have ranged from bitty babies to 18 yrs old—everyone here for chemo. I have seen entirely bald children, some with sporadic hair pieces, some with just thinning hair or bald spots, and some that have not lost their hair.

Parents, they are tired. They are overwhelmed. These parents have bags full of everything their child/ren could need/want during their infusion. I have seen a range of emotions, from irritation to anger to frustration to intense sadness. My heart aches as I wonder which of those categories I have fallen into.

Sweet Mama Precious Baby

This one sweet mama, her daughter, looked to be about 3. When we got here, the little girl was wallering in a chair that was too big for her. Then, mama got in the chair, and this baby melted into the warmth of her arms.

She slept until she didn’t. Once the meds hit, this little girl cried, screamed, thrashed, and more. The mama tried to get the daddy to hold her, and this little peach did not have it. She was angry at her father and did not want him to touch her. This blessed little person wanted her mama, but she didn’t.

Calm in the Storm

Finally, a nurse took them to a private room, where she continued to scream for 45 minutes. My heart ached for them all. Eventually, she fell asleep, and the mom quietly retreated out of the room for some untainted air.

I approached her with kind eyes and a warm tone when she came back in. She apologized if her daughter disrupted us. That is the last thing I wanted. I gave her tips on what we do when H rages. The things that worked for us during his hospital stays. We laughed together quietly. She was able to express herself freely because I got it. I understood. We are all in this together. Honestly, this is not where anyone in this room wants to be.

Macarena

At one point, the nurses started clapping and singing the Macarena song. It was something fun they made up to sing to a patient who had completed their chemo treatments. All patients sang, clapped, and smiled at this victory. A and I fought hard not to have a complete come apart. What a beautiful moment.

Emotions of the People

I’ve seen smiles, perseverance, tears, victories, triumphs, and frustration. The nurses work hard to do their job, and they do it well. My heart aches that we are even here. Yet I know that cancer is not what is attacking H’s little body, and for that, I am thankful.

Completely overwhelmed.

Stop complaining about things that are SO minor. Honestly, the mundane crap and trials of life are just that; mundane crap. It will not matter in a week or a month. Seriously, we all need to get over ourselves. These things we get irritated over are nothing compared to what I am looking at now.

Wanna see strength?

Sit in the cancer ward of the hospital. I just saw a 6’2″ man walking with his 18 mth old balding son. This tiny fry marched confidently to the toy cabinet. Daddy opened it and crouched down as he picked something to play with while he had his treatment. I could not hold back my tears.

Time to Get Over Ourselves

Love more. Forgive more. Hold your family close; even if you don’t like them, you must LOVE them. Stop being petty and snippy. It may take a while to absorb all I’ve seen fully. There is a lot that I need to say to people who have hurt me or whom I have hurt.

Stop talking about living a simpler life, loving more, not holding grudges, etc. Do it. People can say or “post” what they do all day and twice on Sunday. That does not mean they live the life they say they live.

Stop talking. Start doing.

This.

This place is where the rubber meets the road for me. Just as I think all people need to visit a developing country to make them appreciate life more and what they have. This place is somewhere everyone needs to see to humble themselves and be grateful.

Ideas

Donate your time, money, and gently used or new toys to a children’s cancer ward. They need it, and it brings them joy for the time they are here. Thank a nurse, dr, EMT, firefighter, police officer, or military person/family.

My heart is changed.

 

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!

 

Medical Issues, Opsoclonus Myoclonus Syndrome

The Lost Art of Effective Doctor’s

The Lost Art of Effective Doctor's

The Lost Art of Effective Doctor’s

The Lost Art of Effective Doctors. I always go into an office with new hopes and new challenges. I hope I take my kid into the office and get something valid. Anything, really, as long as it is a concrete diagnosis. One child went to seven hospitals to finally land a final diagnosis. Another child has had a slew of issues. Sadly, life is not much different after almost a year. We have seen four doctors in two hospitals, and have been about eight things. It’s super fun to be talked AT and not talked TOO.

The Crystal Vase

I am listening to Broken Vessels by Hillsong right now, and it is striking a chord within me. So many days, I feel like a shattered piece of glass. Once, I was a beautiful crystal vase. There was a purpose for my existence. I held water and beautiful flowers and made people happy. Over the last 5 or 6 years, my beautiful crystal self has been shattered and is in a million pieces. Some pieces are large enough to glue together, though the cracks still show. The rest is just dust. You can’t put dust back together.

That analogy is one I hold close to my heart and I think of often. It comes from a movie, Joshua. Joshua is an old movie, but it is important in my life. Man cannot take the shards and dust of my former self. Yet God can handle all of those shards. He can craft something unique and different. This creation has a purpose and is worthy of being displayed.

Man, I am struggling tonight.

I have to drive to Louisville tomorrow with my sixth child. We are going to Norton’s Hospital to see if we can figure out what is wrong with him. I have PTSD with this drive, the hospital, and the doctors. Sadly, it is hard for me to explain.

That is the 3rd place we took my 7th child to when he was finally diagnosed with Opsoclonus Myoclonus Syndrome. It has been three years, and it feels like yesterday to me. I can recite that first year like I am reading a book. It was so traumatic. Hearing the words “take your son home until he succumbs” haunts me.

So, tomorrow, I have to look down the barrel of that gun again with another child. The anxiety floods me by waiting, wondering, listening, and being talked to instead of being talked with. I feel like my vase is being shattered all over again.

I am Overwhelmed with Fear

Being alone, feeling as if I’m navigating this all by myself. I am harboring feelings of hurt that my husband wasn’t with me though I know he had to be here to take care of our other children back then. Logically, I know that. Yet, that anger is still within me.

Anger is secondary to fear and/or sadness. I fear allowing myself to be vulnerable or showing too much emotion. Honestly, I am afraid of asking the wrong things, feeling stupid by the “professional” doctors, and seeing that one that said my other son would die. Sadness. I feel sad because I do not want to have another child with another “super rare” thing.

I know that Fear is a Liar.

For real, I have the shirt that says that. Hahaha, I’m listening to praise and worship on Youtube while writing this piece.  Fear is a Liar just came on the channel. Wow. Just wow. Yet, here’s the thing. We have been to see one doctor for his sleeping issues. We got there and did EEG, MRI, Sleep studies, bloodwork, etc. He was diagnosed with Idiopathic Hypersomnia.

In checking him for Transient Alteration of Reality, this doctor “accidentally” stumbled on Epilepsy. So then, he was diagnosed with Generalized Epilepsy with Gelastic Seizures and Absence seizures. He referred us to another neuro that works with teens for his Epilepsy. This same doctor would handle Idiopathic Hypersomnia. The doctors did nothing else. There was no education on anything.  

Doctor #2

We got to the other doctor and did more bloodwork and another EEG. That showed that he constantly had seizure-like bursts. So he changed the diagnosis to Juvenile Myoclonic Epilepsy with Gelastic Seizures, Grand Mal Seizures, and Absence Seizures. Prescribed meds. No education, wait.

The first doctor “treats” him for IH but, in reality, does nothing. I mean, quite literally, nothing.

The grand mal seizures began.

Not fun.

ER visits. No help.

Phone calls. No answers.

Emails. No responses.

Got a second opinion.

She said everything we were told was wrong.

Alrighty then. The nurse practitioner spent 1.5 hrs with us. Now, we have information overload.

She throws around words like ESES, LKS, CSWS, and our heads are spinning.

“Get a medical id bracelet. You will need to cook with a buddy. Put the pans on the back burner, do not swim alone, do not climb a ladder. When bathing, tell someone and keep the door unlocked. Driving may be an issue. This may not go away we may have to take the magnet out of his head, ….”

Uhm, okay.

His new diagnosis is Generalized Epilepsy with Grand Mal Seizures. He does not have IH or Narcolepsy.

“Can you wake him up when he falls asleep?” Uhm, no. It usually leads to an extended episode where he makes funny noises, fists, and stiffens his body. “Oh, those are grand mal seizures without the convulsions.” Oh, well, okay then.

“Violent episodes where he seems possessed and looks different?” Yes. “Oh, that is a seizure.”

“Moody? Hysteria, tears, angry for no reason?” Yes. “Oh, those are seizures.”

“School…is he delayed in Language and Math?” Yes. “Yep, part of it.”

“Deaf?” Yes, in his right ear. “Also part of it.”

UPDATE to say that what he was experiencing with the sleep episodes are not seizures. They are called Functional Neurological Disorders. A blog post is coming soon about that.

I am OVERWHELMED.

Going back to this hospital that sentenced my baby to death (yet he is fine now) and seeing all those same people make me so nervous. Our goal is to be home by Tuesday. Supposedly, we will not have to see that one doctor. We would not leave without a complete picture and plan. We shall see.

Thankful

I am thankful that we were able to get into the hospital. Also, the doctor I need to see is the one on call, which is a positive. I am prepared. Big Daddy cared for little things like snacks, fixing my tire, and filling up my tank. Also, I’m thankful I have therapy tomorrow because I will need to use my words. 

 

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

The One that *Sees* You

The One that *Sees* You

The One that *Sees* You

Have you ever felt invisible? That no one sees the pain that you carry around daily? Has your pain ever been so intense, and you have stuffed it so far that you are numb to emotions? Have you ever been called emotionally stagnant or unable to feel things as they happen? Well, that’s me in a nutshell.

Trauma

Childhood trauma, young adult trauma, adult trauma, PTSD, whatever it is you may face. At the moment, I feel nothing. I’m always on mode go go go go go, and then once I’ve gone, I relax. Then, I cry and feel all the feelings. It’s horrible. I’m working on processing the traumas, whether big or small, past, present, or what I foresee.

Have you ever taken the ACE test? The Adverse Childhood Experience study? My score is 6. “People with an ACE score of 6 or higher are at risk of their lifespan being shortened by 20 years. ACEs are responsible for a big chunk of workplace absenteeism and costs in health care, emergency response, mental health, and criminal justice.”

Drug Allergy Testing

So, this past week, I had to take H back to the allergist at Vanderbilt. This time, not for seasonal allergies but for a Decadron Challenge. Doing this tells me whether or not he has an allergy to this specific drug.

Luckily, we had the same nurse as last time and the dr that we met via telehealth the first time. These ladies are so very lovely. They explained things to H and me very well. We had to leave early, and I got so turned around that we were almost lost.

This place is in a shopping mall—I kind you not. We had to go to a mall to go to the doctor. It is so weird. Add that to the fact we had to go up one escalator, down a thousand hallways, and up an elevator to get to where we were going. I was tired. He was getting anxious. We all know the drill.

10 Minutes Late

We got there just in time. The nurse called us back and said how she remembered us from the last time. She did all the things and got us to our room. H was behind me, twirling his shirt and hopping. I sat down, feeling defeated but stoic—Ready for this next test, next doctor, next hospital, next next next.

The nurse came over and asked to hold H’s hands. She looked at him and told him precisely what we would do. That nothing, today, would hurt him. She comforted him and asked him if he was okay. He said he was scared, and she softly assured him that there was nothing to fear. That touched my heart of stone.

Then, It Happened

She got him settled with the promise of Teddy Graham and power aid. Next, she rolled back to her computer and started typing something, asking me the standard round of questions. Then, she quickly turned her chair around and looked at me dead.

She said, “are you okay?” The statement was made with such sincerity that it threw me off. I was speechless. Then, I felt it coming. Tears rose in my eyes, and I gently said, “no.” She rolled over to me, patted me on the leg, and said that it would be okay and that I would be okay.

I Felt Seen

At that moment, I felt she could see directly into my soul. She saw everything that had been stuffed down and wanted to assure me that it was okay. I am okay. It is all going to be okay. I felt such comfort and calmness. Peace fell over me, and I could physically feel my body relaxing.

H must have felt something too on cue because he did his thing. Ever since he got sick, we have listened to Ms. Debbie. She has recorded about eight songs. He knows them all by heart and asks to listen to her because it calms him. He turned around and said, “can we please listen to Ms. Debbie?”

We both listened and praised God together. I am learning, listening, and trying to trust in the process. It is coming up on 4 yrs, and we are both tired. God, give us rest and heal his weary body.

Side note: he is NOT allergic to Decadron 🙂

 

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.