Functional Neurological Disorder, Generalized Epilepsy with Grand Mal Seizures, Medical, Opsoclonus Myoclonus Syndrome

Embarking on a New Month

Embarking on a New Month

Embarking on a New Month

Embarking on a New Month with new hopes and new challenges.  My hope is that one pressing issue is resolved this month.  I also have hope that this will be “drama” free holiday season.  Honestly, I have not had one of those in about 13 years.  It would be nice but I guess I am used to disappointment.  Our challenges began last month and they are trickling into this month.

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.  I was once a beautiful crystal vase.  There was a purpose for me, I held water and beautiful flowers and made people happy.  Now, over the last 5 or 6 years, my beautiful crystal self has been shattered and it is in a million pieces.  Some pieces are large enough to glue together, though the cracks still show.  The rest…well, it’s 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, that is very old but it is so important in my life.  Man cannot take the shards and dust of my former self and recreate who I was originally created to be.  Yet, God, can take all those pieces and craft something unique, different, has 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 such PTSD with this drive, the hospital, the doctor’s and it is hard for me to explain.

That is the 3rd place we took my 7th child too when he was finally diagnosed with Opsoclonus Myoclonus Syndrome.  It has been 3 years and to me, it feels like yesterday.  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, to this day.

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

Not going to lie, I am overwhelmed with fear.

Being alone, navigating this all by myself, harboring feelings or hurt that my husband wasn’t with me, though I know he had to be hear 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 am afraid of not allowing myself to be vulnerable of showing too much emotion, asking the wrong things, feeling stupid by the “professional” doctors, and seeing that one that said my other son would die.  Sadness, I feel, because I do not want to have another child with another “super rare” thing that he has to deal with.

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 I’m writing this and Fear is a Liar just came on LOL.  Wow.  Just wow.**  It is even purple which is the color of Epilepsy.  Yet, here’s the thing.  We have been to see one doctor for his sleeping issues.  Got there, did EEG, MRI, Sleep studies, bloodwork, etc.  Was diagnosed with Idiopathic Hypersomnia.

In checking him for Transient Alteration of Reality, this doctor “accidentally” stumbled on Epilepsy.  So then he had a diagnosis of Generalized Epilepsy with Gelastic Seizures and Absence seizures.  He referred us to another neuro that works with teens for his Epilepsy and this same doctor would hand the IH.  Nothing done, no education, just wait.

Doctor #2

We get to the other doctor, did more bloodwork and another EEG.  That showed that he was constantly having 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, just wait.

Then…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.  She spent 1.5 hrs with us.  Now, we have information overload.

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

“Get a medical id bracelet.  Cook with a buddy on the back burner, do not swim alone, do not climb a ladder, when bathing, tell someone and keep door unlocked, driving may be an issue, this may not go away, we may have take the magnet out of his head, ….”

Uhm, okay.

His new diagnosis is Idiopathic Generalized Epilepsy with Gelastic Seizures and 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 a long episode where he makes funny noises and makes 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.”

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.  Also, I was told 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 that I need to see if the one on call, so that is a positive.  I am prepared.  Big Daddy took care of 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.  What are you thankful for?

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