Rhema’s Opinion on EEGs

Rhema had a 24-hour ambulatory EEG last week instead of a sleep deprived EEG. (That means we all got to sleep – Woohoo!) I took her to the hospital on Thursday to get the leads put on, we came home, she slept, and then we went back to the hospital the next day.

It’s usually the husband’s job to go with her when she gets her leads on. The whole process is usually torture for everyone, including the technician. Rhema is incredibly strong, and in the past it’s taken at least 2 adults to hold her down.

This time around I wondered how I was going to hold her all by myself. But the technician didn’t waste time; she promptly brought out the straight jacket. (I’m sure it has a more PC name, but I don’t know what it is.)

 

Rhema still managed to put up a fight from the neck up, moving her head back and forth as fast as she could. That’s my girl!

First her head had to be measured and marked. This took an excruciatingly long time, and as I stroked her cheek, Rhema tried to calm herself. She whimpered and babbled and hummed. At one point, she even chuckled. And I couldn’t help it, I kissed her face a million times.

Then it was time to glue the leads on. This is worst part. The adhesive gel is cold and smelly, and Rhema is usually terrified of the small suction tool that is used to dry the gel and guaze on her head. The technician turned on the suction thingy and its hiss filled the room.

Rhema stopped humming.

“Uh oh. Uh oh. Uh oh. Uh oh,” she sang.

Even though I knew she was frightened, I loved the appropriateness of her language. I thought it was adorable, and she seemed to get over her fear quickly.

After one side of her head was done, I could tell that she was getting restless and frustrated.

“Huht, huht, huht, huht.” She kept saying over and over.

Hat? I wondered. Is she saying hat?

She looked me in the eye, straight on, and repeated, “Huht.”

Then I knew.

Hurt. She’s saying it hurts.

It just blew me away. Spontaneous and unprompted, she found a way to tell me what she was feeling. I’ve never taught her that word before, never really had a way to make her understand a non-tangible idea like ‘hurt.’

EEG’s are said to be pain-free… uncomfortable, but pain-free. But my girl said it hurt, and of course, Mommy wanted to take the hurt away. Tear off that straight jacket, pick my baby up and walk out of there.

But the EEG was necessary. And honestly, I was too excited over the fact that she actually told me it hurt!

Later, I doubted the whole thing. Did that really happen or did I just imagine it?

The next day, my friend Kristin came with us to the hospital and she went into the room with Rhema to get the leads removed while I stayed with Hope. When it was over, Kristin remarked that Rhema had given her great eye contact. “And she kept saying ‘Hurt.’”

Well, that settles it then. EEGs hurt.

 

All in all, the testing went smoothly, and Rhema was the best she’s ever been.

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34 thoughts on “Rhema’s Opinion on EEGs

  1. Wow. I am floored by this. I would say that I’m amazed, but, Rhema? I’ve come to expect the amazing from her. She knows exactly what’s going on and how she feels about it, and she will do everything she can to tell you! So glad the testing went well – in so many ways!

  2. That is so cool that she told you it hurt. Natalie pointed to her ear a few weeks ago when she had and infection and told her teacher “Owie!” It shocked everyone. It was the correct ear, too! Took her to the doc later that day and sure enough.

  3. OH MY!!!! STOMPING MY FEET IN EXCITEMENT FOR YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! AHHHHHHHHHHHHHHHHAHHHHHHAHHHHHHHHH! WOOHOOOOOOO I know that was awesome.

    I totally understand the hard part… where you don’t want her to HURT< but she TOLD YOU. Awwwwwwww.

    Always taking the good with the bad. But God's amazing miracles are ceaseless with this beautiful creation named Rhema.

  4. The “cocoon” looks much more humane than physically restraining a child with your hands. I remember my son Rocky actually emerging from an EEG with bruises where the nurses held him down.

    • rhema actually seemed to like the “cocoon” – all the deep pressure on all sides. of course, after an hour in there she was ready to get out.

  5. Rhema is just growing and impressing us constantly! The eye contact and the appropriate word – wow!!

    I do believe the technical term is “papoose.” Sarah was just wrapped in one while the doctor retrieved a Polly Pocket shoe from her nose. (Yes. True. I know.) Sarah seemed to rather enjoying being wrapped up in it too – although I think she wouldn’t have lasted an hour either.

  6. Yay!!!!! Jumping up and down for you and Rhema!!! So glad that the testing went well, that they found a way to contain her without using so much force, and that she communicated the way she felt to you—totally amazing! Great eye contact is a beautiful thing.

  7. This is great. I was thinking of you yesterday as I talked to Jonathan’s SLP about something unrelated. (I’m getting paid to write something short about interaction in children’s language development.)

    She gave me a book called “More Than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder.” It is from the Hanen Centre, which I’d never heard about before.

    So just a cursory look through the book reminded me of the last two blogs you’ve had about Rhema’s speech.

    On a different note, I just got back from the dentist with Jonathan, who had a cavity filled. It was awful. He was crying in pain, even though the dentist assured him it wasn’t hurting. And Jonathan kept saying “I done” as if that was going to make it so.

    • JoyMama is familiar with Hanen method and my experience with it has been positive.

      No one can tell what another’s pain is like. I think that dentist is wrong to say it doesn’t hurt.

      For me, even reassuring my child of my presence during painful medical care made me feel complicit in hurting them.

      Here is what I have done….if I knew it was coming, tell the child and prepare them to the best of my ability and their age/understanding. This is based on the prepared childbirth philosophy.

      Distraction can be helpful and powerful for diverting one’s attention from pain.

      Further back, I think papoose is a nice word, too, but I was thinking of the butterfly being released from the cocoon….beautiful fluttering Rhema.

    • Corrie,
      I took a Hanen course a few years ago called “It Takes Two to Talk.” It was very good. I learned the OWL (Observe, Wait, Listen) method from them – which is a helpful practice for us still.

  8. Papoose, I think. And I’m so sorry it hurt. I’m amazed that she told you, of course, but I’m totally broken-hearted that it hurts her. I want to wrap her up in a papoose and kiss her face a million times, too.

    love.

  9. So great that she was able to articulate how she was feeling – that is huge!!!

    At the same time, I would have been right with you in fighting the desire to scoop her up and run for the hills.

  10. I’m on the verge of tears — first over the excitement of Rhema expressing her feelings SO clearly, and then over knowing how hard it is as the parent on the end of watching your kid hurting. It is heart-breaking. “Good talking. Great talking, but we have to stay. Great job using your words.” I don’t know how many times I have had to say these words to Christian while at a doctor or dentist appointment. I hope the EEG will hold some useful information! (I gotta go wipe a “butt” now.)

  11. THat is HUGE, whether it hurt or not. Actually I think it feels different to someone with sensory issues…and /or it’s hurt in the past and she’s meaning, “don’t let this hurt. will this hurt?” Either way it’s a milestone and there will be time for clarification in the future. Glad you both slept.

  12. WOW! Fabulous!!! Go, Rhema! I always hate when medical personnel says “uncomfortable” or “discomfort.” That translates to “hurts like h***.” So you tell them, Rhema! Oh, and Jeneil? You are strong, mama.

  13. At the risk of sounding completely dumb, what will the results tell you?

    I’m sorry that she hurt, but am glad for her capacity to “weigh in” on the matter. Tell Rhema I’ve been praying for her and her momma specifically over the past couple of weeks.

    peace~elaine

    • thanks so much for the prayers!

      rhema has a lot of sub-clinical seizures, particularly during sleep. other times, they will present as “out of it”, staring episodes. the eeg will show if these seizures have returned.

  14. The profound love and courage God has given unto us as mothers. Many of times with my own children I have kissed them as if I have kissed all the pain away. With each kiss the hurt within my child seems to go away. As a mother we encounter the physical pains that make our children stronger within and shape them into people with full hearts to reach out to others. As I read your writings today I couldn’t help , but to think of Mary how she loved her son. Then I thought about God how He felt our pain as mothers with His own son Jesus on the cross. How God with all power, to heal and to fix all things held back for us. That we would have a way to come into the kingdom. This thought comforted me to know that the Holy God understands those moments and can share hope to our hearts as mothers as we release it unto Him. God’s love…………

  15. Pingback: EEG-ness « Autism In a Word

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