Tag: functional neurological disorder

Medical Issues, Opsoclonus Myoclonus Syndrome

Part 3 Welcome Home

Barefoot Faith Journey

Part 3 Welcome Home

 

Part 3 Welcome Home. My flesh screams, hanging onto my airplane seat’s armrests. I refuse to move. This is my anniversary. This is our planned TRIP. We are not moving. I do not want to stay. I would live in France if I had to, but guess what? I don’t have to. We are traveling, that’s it. No more, no less. I sit there, stunned. Unable to move or comprehend what I’m about to see/smell/witness in this country, I have never planned to go to Holland.

What I Envision Versus Reality

The plane’s door opened, and we grabbed our luggage. This was the luggage that was packed for a France trip. We got off the plane. My first thought is the drabness of the airport—the busyness of it. I felt like I needed to wash my hands because so many people were touching me. They were all speaking in different languages. I watched their mouths move, trying to read lips or get a nugget of information, but I couldn’t. I couldn’t understand any person or sign. There was also not a single person who spoke English. I felt trapped in this foreign country. There was nowhere, no one to guide me, no vehicle, no home, no food, nothing.

Overstimulated Moment

I picture us grabbing our stuff and trying to find our way out of that blasted, loud, big, busy airport. There was a moment when I needed air. Sadly, I was overstimulated by the news and anxious because this was entirely out of our control. Air, I needed to breathe fresh air and take a moment to regroup. I was thrown into something that was not of my doing. There were two choices: I could curl up in a ball and sob or find a way through the fear and uncertainty.

Ray of Sunshine

As I processed this news, I felt a ray of sunshine hit my face. I felt a cool breeze as we walked outside. In one moment, I opened my eyes, and from as far as the east was from the west, there were tulips. I love tulips. Honestly, I love their beauty, the array of colors, and the smells. Tulips come up every single year without fail. Far off, in the distance, I saw windmills. The most gorgeous background I have ever seen in my life.

Absorbing my Surroundings

As we walk around, absorbing our surroundings, we think about Paris and what we will miss. The art, the food, the atmosphere, all of our plans, all the cool things we would see, yet we had to mourn that because we knew we were “stuck” in Holland. Don’t get me wrong; Holland is phenomenally gorgeous. It is just where I wanted to be. I don’t mind a visit, but why must we live there. We had to mourn not seeing our family, our home, American food, and the freedoms we had in America. There was just a lot to process.

Once our mourning was over, we settled into this new life, this new place with all these new sites, foods, noises, and smells. We began to acclimate to our surroundings, and we began to learn about the cultures and the foods.

Holland and Its Beauty

Holland has its beauty, but it was not what we had initially planned. We had to learn to adapt and compensate for what we wanted to see in Paris and what we wanted from home. It wasn’t bad, just different. It was a change, and I’m not one to like change.

I had to learn that I could not “fix” my children…only God could and will do that. I had to learn to let go of control and begin to love what is. By mourning the loss of what was going to be a 10-day vacation to Paris, I was losing out on what was surrounding me.

Seeing Things from a Different Perspective

With new colors, new foods, and new scenery, I began to love my new home, and I began to change by loving it. Ironically, I began seeking God more and seeking help for my depression. Also, I learned that FASD, RAD, Single-Sided Deafness, and Opsoclonus Myoclonus Syndrome do not define my children. Finally, I learned how to love again and my God, my husband, and my children for who they were, not what I “envisioned” them.

Be open to change. Be open to new things. Stop trying to fix things. Stop trying to control what you are not meant to control.

Live life and love without abandon.

 

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Part 2 Uhm NO

Barefoot Faith Journey

Part 2 Uhm NO

 

Part 2 Uhm NO

Uhm, WHAT??????!!!!!!!!!!!! Holland? Uhm, no. No, thank you. I know nothing, and I do not have an itinerary. Sadly, I do not have a place to stay. I don’t know where to eat. I know nothing. NOTHING. I can picture myself asking the stewardess if this is a layover. How long it will be before we arrive in PARIS, FRANCE. Then, she says that this is our destination.

Our ticket is one way, and they will add our children/pets onto the plane for the trip. This is where we will live out our days until the Lord sees fit to move us somewhere else. I had planned on staying in France for ten days, not my life. I certainly did not plan on LIVING in Holland, and what the heck do you mean you will bring our kids during the flight?????????

When we started creating our family, we had definite plans.

Big Daddy wanted one child, and I wanted 4. We compromised on 3. Our oldest was high-strung, motivated, and determined. She is also super sensitive to bright lights and noises and does not care for many people. Our second was a pistol. She was creative, loved animals, and told you like it was regardless of if it was appropriate or not. She has a bit of a lazy streak and wants things done for her more times than not. Our third, our only biological son, was an easy baby until he wasn’t.

N’s Journey

He was the first to crawl. He babbled, talked, loved eating, and then he had his 12 mths shots, and his life changed. Maybe that was when we were “packing” to go to Italy. It was like shades pulled down over his eyes. He stopped talking, threw lots of fights, and had sensory issues. It was tough. Our life was now full of speech therapy, occupational therapy, and physical therapy. It was hard. The Lord guided us and helped us and allowed me to have a great deal of soaked in knowledge. Today, you would never know anything was ever wrong.

So with V, we started planning the trip. A, we started saving for the trip. Then, with N, we got on that plane and headed to Paris, France, to see all the things we could see on a 10-day trip.

Then there was God.

As we were flying, God saw fit to allow two more kids to join our crew. These kids were older than came from severe trauma physically, mentally, and emotionally and among other trauma, He thought it’d be a good idea to have Big Daddy and me raise them. It was almost like He threw me into the lion’s den as he did with D. I was unprepared. Realistically, I could love the FASD (Fetal Alcohol Spectrum Disorder), RAD (Reactive Attachment Disorder, Behavioral Issues, Dyslexia, Developmental Delays, Food gorging/hoarding/stealing out of them. Sadly, I wanted to fix them. Plain and simple.

While I was “trying” to “fix them, “…..God showed up again.

This time, it was a brief detour, on our flight, to Ethiopia. The trip there was ROUGH. It was full of turbulence and engine problems. We thought and were told we would not make it, but GOD had other plans. We made it. Instead of a 24 hr flight, it would take us 15 mths to get from where we were (on a plane headed on vacation to Paris) to Ethiopia because He wanted us to add to our dysfunctional crew. He was another older child, and he had a malnutrition brain and some behavioral issues; and we came to find out that he was deaf in one ear. He was not a little bit hearing impaired but deaf. Again, I could fix this. I could continue raising all these kids while “fixing” their issues and problems. I was content, tired, and overwhelmed but content.

But then, there was God again.

There have been tears from our first child to our sixth child. I was sitting on that plane, wishing to be at our destination so I could have some respite and time to breathe. God decided to be my breath and to live for me. He did this in the form of our seventh child, our Okapi.

I thought the stress of trying to fix my FASD, RAD, ADHD, PTSD, Dyslexia, Learning Disabilities, Deafness, Autistic tendencies, and Opsoclonus Myoclonus Syndrome was going to bring me to my knees. Oh, heck no, this little dude came into my life and turned it upside down. He has taught me so much and given me such joy, but he also went from an ordinary little boy to a medically fragile kid in about 4 hrs. Please hear me say. I would not change a thing with this little guy. He brings us joy and happiness even amid uncertainty with his health.

Part 3: Welcome Home.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Part 1 Heading to Paris or Are We

Barefoot Faith Journey

Part 1 Heading to Paris or Are We

Part 1 Heading to Paris or Are We

Part 1 Heading to Paris or Are We? Let’s all take a moment and soak in the beauty of David. Michelangelo was a master of his craft. God created this man and honed his craft to leave people like me breathless. I love art and always have had a great love of art. I enjoy expressing myself and my emotions through painting, sketching, and doodling. My dream is to go to the Louvre in Paris. I want to absorb it all. I don’t want a guide. I don’t want to be in a group. I like the freedom to walk, stand, admire, and ingest all the glory of all my favorite artists. It is a dream. To see this in person and the Headless Angel, oh and to see the Mona Lisa. Oh. My. Word. Can you even imagine?

25th Anniversary Trip

The GLORY of this is that I’m going to go!!!!! Next year, Big Daddy and I will be married for 25 years. God willing, our trip to celebrate will be in Europe. Big Daddy does not care for museums or art, but I could and probably will spend an entire day there. I want to revel in the beauty of these timeless pieces.

When we go on vacation, I spend MONTHS researching. I will find places that we both want to go to while there. There will be a time when I research all the restaurants and incredible attractions and prep (financially) for any things that require money. I will have a complete itinerary. When we went on our 20th anniversary, I had eight pages of places, addresses, phone numbers, and websites to go to Niagara Falls! Planning is fun for me. I am SO excited. Niagara Falls is on my bucket list. This is a dream. Bart and I live in the US. We have visited Canada, Mexico, and Africa. We still have a few more continents to go before I am content 🙂

Flying Away to Paris

Now, I can imagine being on that plane (I love to fly) and jetting off into the sunset. My kids and pets are all well taken care of at home. I have my fella, and we are off! There is a moment when I’m so excited that I can’t even stand it. I can imagine being even more excited than when I went to Africa cue heartstrings cause I love Ethiopia. As we travel, we eat, sleep, watch tv, read, and use the bathroom on this plane. It is our home for however many hours we are on it, and we will revel in this little getaway.

My Version of Welcome to Holland

When I read this poem, it reminded me of our trip that we ARE planning for next year. My mind began to wander, which is the scenario I imagined.

We get the overhead notification that we are preparing to descend. Finally, we are there. We have made it. We have arrived. We start to land, and the plane screeches down the runway to make a stop. We hear, “WELCOME TO HOLLAND.”

Part 2: Uhm, NO!

Medical Issues, Opsoclonus Myoclonus Syndrome

Welcome to Holland

Barefoot Faith Journey

Welcome to Holland

Welcome to Holland is a poem that I have always loved.  It is a different way to look at things when life does not go as planned.  There are 4 of my 7 children who have special needs.  We have dealt with Dyslexia, learning disabilities, Fetal Alcohol Syndrome, Reactive Attachment Disorder, Sensorineural Hearing Loss, Generalized Epilepsy, Functional Neurological Disorder, and Opsoclonus Myoclonus Syndrome.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this:

Planning a Trip to Italy

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

Discovering You are in Holland

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.

 

Medical Issues

When the Adrenaline Crashes

Barefoot Faith Journey

When the Adrenaline Crashes

When the Adrenaline Crashes

When the Adrenaline Crashes, reality sets into your body. I feel the heaviness on my chest like a herd of elephants. The emotions flood over me, and I yield to the pain of what I have experienced. Yet, my pain is nothing compared to the fear and pain of my child.

I can’t even articulate what he is feeling right now. We try and work on communication, but let’s face it, communication with a teenage boy is like licking a porcupine. It doesn’t work well. Within three days, he has had 3 Tonic-Clonic Seizures. He has been to the ED twice, where we waited for hours for nothing. Nothing. Just nothing.

Total Random Finding

Let’s all realize that we discovered he had Generalized Epilepsy about four weeks ago. He had gone through a year of testing to determine his sleep issues. We had to rule out sleep apnea, adenoids, snoring, good sleep at night, etc. All that was good.

Next, we moved to an EEG…which was fine. Just because it is fun, we did have our child do a 2-4 day MLST. We were told things were fine and that he didn’t hit the REM cycle during his naps. That ruled out cataplexy. He was diagnosed with Idiopathic Hypersomnia (mistakenly). The final diagnosis is Functional Neurological Disorder.

Then we got a strange phone call from the nurse at the neuro office. She said, “did the pharmacy call you to tell you they denied the medication for seizures?” I’m like, no, this child doesn’t have Epilepsy, he has Narcolepsy, and to my knowledge, he was prescribed anything.

Jokes on me.

She said, oh, he has seizures. It showed on his EEG and his MLST, and the Dr. needs to get him started on medication. I sat there for about 5 minutes and said something to the effect of, “he doesn’t have that. That’s not what we were testing him for. Are you talking about him having Epilepsy? What are you talking about?” Then she realized no one cued me in on the verdict.

That was super special.

We got into the dr, and he could tell I was miffed. I asked why he thought it was important for a pharmacist to inform me that my son had Epilepsy. Why didn’t he make the call, and what was he going to do to help my son. He halfway listened, and then he referred me to his colleague. He works more with Epilepsy, and the current neuro did more of the sleep stuff.

I said, ” Well, when are you helping with the sleep stuff? The answer was not what we wanted to hear. It was more of when Epilepsy gets under control. Alrighty then. Three triggers for his Generalized Epilepsy are lack of food, stress, and sleep deprivation. He is never hungry, our house has a decent amount of stress, and he has mistakenly been diagnosed with Narcolepsy. Again, this is a Functional Neurological Disorder.

I am stupid.

The ED dr was an idiot the first time around. She said he was fine and didn’t have anything. We left AMA. The second time we went, we had a friend there and a great doctor who was very thorough and helped us transition his meds. The fourth dr finally walked in after about 3 hrs. Normal. It is normal not to breathe during a seizure. Yep, that’s when I lost it.

So they got us into the neuro, and he and I had many words. He said that not breathing was rare, that it isn’t worth alarming parents for something so rare. I told him I would be somewhat alarmed than finding my son dead in his bed because of SUDEP. I asked how he would feel if this were his son.

If a dr didn’t disclose everything, his son would stop breathing for 10-15 seconds, and you couldn’t get him breathing if you were the one that waited for about 30 minutes because of the ambulance. Then, when they got there, they couldn’t even transport him due to the rules of another county.

Changing Meds

Instructions are to wean him off one epilepsy medication (the one that makes him mean) and slowly add in the new med. I have told the other neuro that we need to move forward with some FND help. If his sleep issues make his seizures worse, it seems like it would be wise to get that under control so that he can have some idea of what it feels like to be normal.

But what do I know? I’m just the mom, and my adrenaline is crashing.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

The Lost Art of Effective Doctor’s

Barefoot Faith Journey

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.