Medical Issues

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 Doctor’s. 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 on a final diagnosis. Another child has had a slew of issues. Sadly, after almost a year and a half, life is not much different. 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. 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 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 so important in my life. Man cannot take the shards and dust of my former self. Yet God can take 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 such PTSD with this drive, the hospital, 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 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. The waiting, wondering, listening, being talked at instead of talked to, the anxiety floods over me. I feel like my vase is being shattered all over again.

I am Overwhelmed with Fear

Being alone, navigating this all by myself. I am harboring feelings or 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 am afraid of allowing myself to be vulnerable or of 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 I’m 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, 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 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. This same doctor would handle the Idiopathic Hypersomnia. The doctors did nothing else. There was no education on anything.  

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.

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

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. 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 a long episode where he makes funny noises, 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.”

**UPDATE to say that what he was experiencing with the sleep episodes are not seizures. They are called Functional Neurological Disorder. Blog post 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 that I need to see is 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. 

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When the Adrenaline Crashes

When the Adrenaline Crashes

When the Adrenaline Crashes…reality sets in.  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 lets face it, communication with a teenage boy is like licking a porcupine.  It doesn’t really work well.  Within 3 days, he has had 3 Tonic-Clonic Seizures.  He has been to the ED twice, in which we waited for hours, for nothing.  Nothing.  Just nothing.

Total Random Finding

Let’s all just realize that we accidentally found out he had Generalized Epilepsy about 4 weeks ago.  He had gone through a year of testing to determine his sleep issues.  We had to rule out sleep apnea, adenoids, snoring, getting 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 Jude 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…Jude 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 so important for a pharmacist to inform me that my son had Epilepsy.  Why he didn’t make the call and what was he going to do to help my son.  He half-way listened and then he referred me to his colleague.  Apparently, he works more with epilepsy and the current neuro did more of the sleep stuff.

I said well, then, 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.  Well, 3 triggers for his Generalized Epilepsy is 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 Functional Neurological Disorder.

Apparently, 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 to not breathe during a seizure.  Yep, that’s when I lost it.

So they got us into the neuro and he and I had lots of words.  He said that not breathing was rare, that it isn’t worth alarming parents for something so rare.  I told him I would rather be 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 all the things and that his son would stop breathing for 10-15 seconds and you couldn’t get him breathing.  If you were the one that waiting 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, 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.

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