Medical Issues

When the Adrenaline Crashes

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

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.


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.


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.