Tag: sudep

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.