Musings of a Marfan Mom



Menininho had an EEG on Saturday to check for seizures. Silent seizures can be hard to detect, but he’s had some symptoms (periods of staring off into space where he can’t be interrupted, loss of skills) so Dr. Awesome thought we should get the test run just to be safe. In case you’re unfamiliar with them, an EEG on a toddler requires them to go a long time without sleep, then have electrodes glued to their head and a series of tests done. Menininho, not quite 18 months, was only allowed to sleep from 11 pm to 4 am Friday night. The EEG wasn’t scheduled till 1:30.

He was a trooper. He did start to cry on the way there, because I had to shake keys, sing, and poke him to stay awake, but he was a star. I was really proud of him! That said, I’m never making him do this again unless there is total proof he’s having seizures. Allow me to tell you what happened.

I realized that traffic was so bad that we’d be late, so I called the doctor’s office to let them know. I started to leave a message when I got called back, and the woman who answered the phone told me it was fine that we’d be about 15 minutes late. However, when we arrived at the office, we were greeted with: “You’re lucky I answered the phone! I never answer the phone, I just give people 20 minutes and then I leave. I would have left you.” When I replied that we were only 10 minutes late, she responded “still would have left you.”

Um, given the nature of preparation for this test, shouldn’t she be giving people benefit of the doubt? Maybe answer the phone if it rings? Wait 30 minutes in case they got the time wrong, got lost, or stuck in traffic?

We were given little information about the EEG itself. The tech told us she would be administering it, that electrodes would be glued to M’s head, if he took them off she’d end the test and send us home, that there would be a strobe light, and he’d have to sleep for 10 minutes. That was it. Apparently we were supposed to keep him awake while she measured and placed the electrodes and she was upset that we didn’t. Sorry we can’t read minds.

Her cell phone kept going off. Yes, she had her personal cell phone on vibrate in her pocket. It was very loud.

The tech suggested she tape the already glued electrodes to Menininho’s head so that he didn’t tear them off. We were so worried about her stopping the test if one fell off that we agreed, even though she told us it would be more painful for him. Too bad she didn’t also tell us that she was going to wrap his head in gauze like a mummy too. The tape was overkill and I believe she knew that.

During the sleeping portion of the test, her cell phone went off AGAIN.

Then, she started asking random questions: Am I pregnant? Were we tired? Why were we here?

I kind of expected that if she didn’t know why were having the test run, that should have been one of the FIRST things to find out. But, I explained that one of the specialists was worried about seizures and why. Mark added that it potentially made sense, given that seizure disorders tend to be comorbid with autism, and Menininho is suspected of having autism. She asked rather rudely why we thought he has autism. So, I responded rudely back (because really, I’m tired of us being second guessed): “Because he has the symptoms!” And here’s the gem:

“So what’s he do? Sit around and flap his hands?” And then she flapped her hands to mimic a child who stims.

That’s completely inappropriate. On SO many levels. I was speechless.

When I got my voice back and started to list symptoms, she cut me off and told me now wasn’t the time to tell her because she wasn’t able to record it. So what is it? She’s making small talk or she’s taking a history…can’t be both. Only one of those requires me to answer anything.

Then, the tech told Mark to keep the baby awake. Menininho flipped out, as I’m sure anyone can understand. Upon being awakened, he screamed, threw his body around, began to grab at the gauze wrap around his head. The tech just watched us try to soothe and restrain him for about 3 minutes before remarking “Oh, you didn’t have to KEEP him awake. I just wanted to see if he seized upon waking up. He can go back to sleep now.” I was livid. Of course there was no calming him down at this point. We had to just try to keep him still while she watched. And, just as it was time to undo the dressing and take off the electrodes, her phone rang again. AND SHE TOOK THE CALL! Yes, with my son screaming in the background, waiting to be unhooked, she took a couple minutes to talk with her son.

THEN, she had the gall to chide Mark and my baby for pulling off the electrodes themselves. She said doing that would hurt Menininho. We had to go to another room for her to wash them off, while telling me she was in a hurry to get home, and that maybe the doctor would look over the results and get back to us this week…whenever he “had time.”

Why, yes. I will be sending a written complaint to the office.

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  1. OMG I am SO sorry your son was put through that! File a complaint with EVERYONE you can. Do you have names of the people you dealt with? I feel for you and your family!


  2. the tech sounds very unprofessional – I would be following up too! Hope she was able to get the info you needed so you don’t have to have a repeat performance…


  3. OMS!! WTH?! I would definitely be writing a leter and talking with teh patient relations department of the hospital/office. How rude and unprofessional of that woman!!!….hopefully the lady got good results and you wouldnt have to do this again…


  4. Wow…. that left me speechless. I do not understand why people do their jobs, if they don’t like it – fake it til you find something else. That was completely unaccepatable from start to finish. Crazy. Hope that complaint is heard!!!


  5. This is just horrible! I’m so sorry all 3 of you had to go through such a nightmare just because you are trying to do what is best for your son. I’m constantly shocked by the lack of CARING in the healthCARE industry! It’s unreal! As I’ve said before, it’s like adding insult to injury — like you aren’t already going through enough with trying to help M, that you have to deal with idiots like this woman!

    She picked the wrong woman to mess with!


  6. Oh you poor thing! We went through an EEG on our 3-year-old – SO awful – and we didn’t know what kind of hell we’d be in for either. But the gall of that tech. So sorry!


    marfmom Reply:

    Did they make you keep your son awake too? Everyone else I’ve talked to said their kids were sedated to make it easier. Makes me wonder why they didn’t sedate my son!


    Shawn Reply:

    Yes, we had to do the same exact thing. Slept from about 1 a.m. till 6a.m. My dad came to the appt with me since my husband had to work, and I did not know how tortuous gluing the leads on was going to be. The did the mummy wrap around his head as well. Exhausted, crying (both of us!) it was awful. Luckily the test was normal (this was for my youngest who my husband said he witnessed have a small seizure one day). EEG & MRI were normal and never have seen any more seizure-like activity.


    Rebekah Reply:

    A sleep deprived EEG is more likely to elicit a seizure in some patients, so if it is unclear whether or not they are seizing it is usually done that way, but it’s usually the first case in the morning…

    marfmom Reply:

    Ah, thanks for the clarification! I wish that had been communicated to us. We’ve never seen one coming in and out of waking, just during the day. He had another episode about 5:00 this evening at the park while we had snack time, but it didn’t last long.

  7. THAT WOMAN should be fired. I am so sorry you all had such a miserable experience, and I am so glad it is over. :( I cannot believe how completely self absorbed and insensitive people can be.


  8. Absurd. Not even sure what else to say.


  9. Maya, your ordeal was a disgrace to the medical community. It must have been like an arrow in your heart to see your baby boy treated the way he was. And she was talking to her son? How could she not even have compassion being a mother herself. Awful!


  10. I am soooo sorry for you guys. I know you will do everything in your power to make sure this does not happen to another child or family. Go get ’em.


  11. There is a great deal of irony in your experience, and none of it reflects well on the tech. I don’t like causing trouble, but if she treated you this way, it needs to be reported. Her lack of care for the patient’s suffering is reprehensible.


  12. Wow, that is disgraceful! We had the same test done a few years back, our experience was filled with understanding and compassion for the necessary torturous preparation. I sure hope you receive a response and an apology about this incident. And I hope the test showed no epilepsy. I was told that the test my took was conclusive enough to rule epilepsy out that it never had to be repeated. I hope you get that too.


  13. Like Julie, we had a really good PROFESSIONAL experience when we did this. I cannot believe this woman—my blood boiled as I read this. Write that letter. On the positive side, at least her awful behavior took your mind off the test!!!! I hope it’s negative.

    It’s good to connect with you. I just wanted to reach through the screen and pinch M’s cheeks, he is just delicious.


  14. I’m sorry he had to go through that!


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