The Doctor who said, Your Child is the Least of my Concerns

My daughter is autistic and started having seizures at age 11.

I remember the day I got the call from the school nurse that she had a seizure in class.

I actually expected it at some point due to her neurological issues, so it didn’t take me completely by surprise, but it was terrifying nonetheless.

We already had a neurologist so we had the 24 hour EEG right away which confirmed she was having partial complex seizures. The type where you just kind of stare off into space for as little as a few seconds at a time.

I really had no idea that seizures could look like that and I wondered how long had she been having them and was I oblivious?

She was allergic to the first medication so we had to wait for it to get out of her system before starting a new one and the school was calling me and sending notes home daily reporting multiple seizures.

Apparently they knew what they looked like.

This started a journey of testing and medications to control them.

I was on constant high alert. Was she just spacing out or was this a seizure?

I watched her non-stop. She started getting these really hard hiccups in her sleep and sometimes she wouldn’t sleep at all. Was it seizures?

If she got pale or looked like she was going to faint, was it because she was having a seizure?

Every time we went back to the doctor he would ask how the medicine was working and I would give him my best guess as to whether or not she was having seizures.

I didn’t want to overreact but I didn’t want to downplay it either. The rest of the family was even caught up in the “seizure watch”.

The medication dosage was adjusted a couple of times based off of our seizure reports.

Honestly, we didn’t see any huge difference either way and since she had been on the medicine for a while, we no longer knew what her baseline even was.

After a couple of years on the medicine and still seeing what we thought to be seizures, I decided to take her to a new doctor I had heard about.

He was an epilepsy specialist and on our 1st visit we met with him, the psychologist and the nurse practitioner.

We had a team of clinicians ready to figure this out!

He had looked at her eegs and said the MRI showed some abnormalities in her white brain matter, which the previous neurologist had said was normal.

I was very impressed and confident that we would be given the best treatment options.

He scheduled a 5 day stay in the epilepsy unit where she would be taken off of the medication and hooked up to the eeg 24/7 to record the seizure activity.

The stay also included a psychological evaluation. She had been tested before, which is where we got the autism and intellectual impairment diagnosis, but again, we were excited that he wanted to cover all the bases.

I took off work so I could stay with her.

We knew this wasn’t going to be easy. Her autism made any change difficult and being hooked up to wires and monitors and not being able to leave the room for 5 days was not going to be a fun trip.

We were terrified that taking her off the seizure medications would set her off and we may even see grand mal seizures but we felt it was better to know what we were dealing with than to not know.

So we packed up, prepared her as best we could, and headed to the hospital.

The preparations didn’t go without incident including meltdowns and continuous attempts to redirect but eventually she was all hooked up, the medication was stopped, and then we waited.

I was supposed to hit the button whenever I saw seizure activity so they could record any outward activity with the corresponding brain activity.

The first day, nothing. Second day nothing. Third day nothing.

I was really looking too, studying her hard!

I didn’t even see the moments of spacing off that I had seen when she was on the medicine.

On the fourth day the doctor came in with his entourage. He probably had 5 or 6 interns following him from room to room.

I was prepared for good results since I hadn’t seen any outward signs of seizures while being off of the medicine. 

I was anxious to hear if the eeg had captured any abnormal activity and what his treatment plan would be.

He said the eeg had showed very little abnormal activity and in fact he felt that she could remain off the seizure medicine.

I was happy everything was pretty normal but I questioned why we had seen what we thought were seizures when she was on the medication and I was concerned that the seizures may come back.

His demeanor was a little dismissive but I figured that was just his “doctor attitude”, that is until he looked at me and said “your daughter is the least of my concerns”. 

That shut me up and shut me down.

I knew there were kids on that unit that had much more serious conditions than my daughter. Probably kids that had uncontrolled seizures.

Suddenly I felt like we didn’t deserve to be there, like I had wasted everyone’s time.

We left the next day but I couldn’t get his words out of my head, “your daughter is the least of my concerns”.

Every time his words went through my head, I got more and more angry and of course I thought of all the things I should have said.

Like, my daughter is my only concern.

She is my life and my breath and if she’s not ok, I’m not ok. If she’s hurting, I’m hurting.

My daughter doesn’t have the ability to say “Hey Mom, I’m having a seizure”. Or even, “I don’t feel right”. I’m her eyes and ears, I’m her eeg.

I don’t always get it right but I try the best I can to figure out what she needs and when she needs it.

I listen to the advice from professionals like teachers and doctors, always trying to gage what’s right and what’s real, what’s necessary and what can wait.

I research, read and google symptoms and treatments. I come to appointments armed with the results of my hours and hours of studying ready to discuss options and outcomes. 

My daughter is my BIGGEST concern! What he said, pierced my heart like an arrow and just confirmed that there will never be a better advocate for my child than myself.

God may not have given her a voice but he darn sure gave me one and I will use it till the day I die to fight for her.

One good thing did come out of that stay, she has been off the seizure medicine and we haven’t seen a seizure in years.

I took her back to her previous Neurologist last year just to ensure I wasn’t missing something and her eeg didn’t show any more seizure activity.

We still don’t know for sure when they stopped or even if the medicine was part of the problem but we did learn to trust our own intuition a little more.

We know our little girl better than anyone and we will just trust in that and in ourselves and she will always be our main concern. 

Written by, Tammy Twenhofel

My daughter Casadee is 17 with a diagnosis of Autism and Mitochondrial Disorder.

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