Electrode Removal – a Horror Story.

Once little T got used to the placement and the backpack, he was playing and going from room to room.  He had full awareness that he was “wired” and this was not normal.  He did not forget and he was very sensitive.

He barely ate after the electrodes were placed.  I know he was avoiding eating and drinking because he wanted to make minimal trips to the bathroom with the backpack.  (And really?  Who could blame him?  Who knows where that backpack has been – it’s not like it was new when they gave it to him.  I really doubt whether it had ever been washed – yuck!)

The muscle relaxant given to him earlier in the day, combined with his car nap home left him refreshed and still wide awake at 10:00 p.m.  He finally settled down for bed around 11 p.m.  This is when I got very nervous.

He had to sleep with the backpack next to him.  The collection of wires had been bunched up and hung down just long enough that if he rolled wrong in the middle of the night he could choke himself.  Both the hubs and I worried all night and kept checking him because he has a tendency to really roll back and forth in his sleep.

 Bedhead with Cemented Electrodes…

When he finally woke up in the morning, the gauze covering had come off completely.  He did not lose any electrodes.  They were, pretty much, cemented to his head.  Waking, he was lethargic and not happy to have the backpack accompany him to the bathroom.

He knew that he would go back and return the “stickers”.  He was nervous about this as he did not like Round 1.  “Are you going to see the EEG tech today?” he asked.

He was able to help get ready to go and get his shoes on.

Not responding to his tutor before electrode removal...

He lasted for about 1.5 hours in ABA session before the therapist came in and told me he was not responding and he was calling the shift.  Poor little guy was pre-occupied about his return trip.  Luckily, we were scheduled to return everything at noon, a couple hours shy of the “24”.

When we arrived at the hospital, there was a different tech and the same tech – together.  The new tech was bossy and unfeeling.  She had lowered the gurney and told us he would have to lay down “this time”.  Jessica, already upset by yesterday’s festivities, made it clear to her that he had been laying down yesterday as well.  The bossy tech said, “Oh, did I do his placement?  I did so many yesterday, I don’t remember.”

Immediately, the little guy started to fight.  Bossy decided she would papoose him.  She had the heavy, weighted velcro straight jacket under him already and just put him in lock down.  He was absolutely beside himself with hysteria.  His entire face turned bright red.  The tears flowed and he yelled through his tears to get out.  “Off!! Off!  Take it off!  Mommy take it off!!”  “Jessica!! Say ‘hi’ to Jessica!  Off, off!!”  “Do you want the black Nissan?”  “Let’s look at the black one!  Black!”  “Screwdriver!”

This went on for 30 minutes.  I asked her how long it was going to take as I kissed and wiped away my son’s tears.  She looked at me and did not respond.  I asked again.  She looked at me and said something that I do not even recall now but she never gave me an answer.

She put this solution all through his hair and on the electrodes to loosen the glue and scrubbed his scalp harshly.  She pulled on his skin to yank off the electrodes and barely kept the solution out of his eyes.  It was truly horrible. I am very angry about their complete lack of compassion and gentleness with my child.  Basically?  They gooped him up, didn’t talk and yanked those suckers pulling and lifting his skin for the return of their precious electrodes.

My little boy’s face was soooo red.  He was like a little tomato.  I felt horrible.  Jessica felt horrible.  She told me afterward it was killing her to see him so beside himself and be unable to do anything about it.  We both felt helpless.

He was hysterical even after it was over and we were outside in the hospital lobby.  In fact, he let loose with a good loud scream.  I say, “Good for you, T!”  They made all three of us so mad!  It took a good 10 minutes for him to calm down and normalize.

At home, I gave him a regular bath with extra shampoo to the hair and did not notice anything out of the ordinary.  When we got back to the bedroom and I was combing his hair, I saw there was a HUGE amount of glue still adhered to his scalp.  As his hair dried, it looked like the worst case of dandruff, I’ve ever seen.  He will need at least three more shampoos before that gunk is all out of his hair and all the green marker is gone.

I’m leaving him alone for now.  He’s been through enough.  I just hope this helps someone else get through it better prepared than we were.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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33 Responses to Electrode Removal – a Horror Story.

  1. Well, thanks to an almighty slow internet connection, I’ve missed a whole lot. Poor boy! I’m going to have to go back to get to the beginning of this saga.

  2. Julie says:

    There is no excuse for that behavior! You need to contact the CEO of the hospital and complain! Poor sweetie!

    Put a little bit of olive oil on his scalp when his hair is dry and give him a nice gentle massage. It will help to work the glue out.

  3. I’m so sorry you had such a terrible experience! Both times we had electrodes put on, and both times we took them off, our techs were so kind. (And the backpack was new!) I would agree you should complain, they should definitely be understanding, especially for a special needs child.

  4. Teresa says:

    The important thing today is that you got through the procedure and should have valid results. We are sorry for ordeal you and your son had to suffer through. We’ve been there. I feel the pain in my heart just remembering the difficulties. Stay strong!

  5. Jen says:

    Was this at a Children’s Hospital?! OMG…some people go into the wrong field!!! I have been wanting to do this with Katie, but am not ready to go through it all. She has had these zone out eps since infancy, which the ped always brushed off, but I was thinking about asking the neuro if we could test for seizures. A few kids I know have gone through it lately, and I am traumatized-by-association. Hopefully you get some good results, though!

    • Aspie Mom says:

      Here are things we did: If you can stand short hair for awhile that makes everything much easier. Go to the head of neurology and tell them your child is autistic and you want to observe some techs until you find one qualified to work on your child. Let your kids see the procedure with a calm child if that will help. Talk up the robot angle. (It is SO COOL to be wired up). Can you work on it in ABA for some weeks? Practice tolerating the shampoo sink during haircuts? Have her attach wires to you and screw up your hair? Test the sedative before so you know exactly how long it acts. Set up before hand with both the nice ladies at the desk and the actual tech that you will not be arriving until the moment they are ready. Have them call you 10 min before you are ready and drive around until then (if your car is the sleep zone mine was). And they actually have appliances to warm up that glue. It might set a little faster, but they are supposed to be skilled.
      Usually I forced them to let me hold my child during procedures unless they could present an excellent scientific reason not to. I don’t care if they don’t trust me, or they are not comfortable. My child’s trust and comfort are #1.
      The electrodes are disposable. Take them off yourself. They just unplug from the backpack.
      Good luck!

    • solodialogue says:

      No, no. NOT Children’s Hospital – this is a local Northern CA hospital which, normally has a great rep. NOT for this department! The last thing I’d want you to feel is “traumatized by association”! Katie has enough on her plate right now for quite a few weeks to come. Learn from my mistakes Jen! Then, just make sure you check everything out in advance before you go – especially if Katie is sensitive to things being touched on her head. As long as you plan and practice better than I did, literally and with social stories I’m sure you will be much better off than we were. (I hope we get good results too)

  6. Jen says:

    I hate those techs! That is all.

  7. Aspie Mom says:

    I agree with Jessica. They didn’t need to do that at all, and you should definitely complain. I never believed the second tech could be worse.
    As for the “precious electrodes”, they buy them by the truck load, they cost a few bucks, and they are going to throw them away. They only needed the backpack.
    SD I read your blog because you are smart, interesting, thoughtful and a great mom. And I so admire T and how hard he is trying to please you, and how he doesn’t go catatonic after these things. Since I am ASD I am told I’m supposed to say nice things and not criticize people. So please don’t take my comments as criticism. But I have laid awake 2 nights feeling what your son is feeling. And I did all this with my son already.
    This is how it looks to me standing 13 years down your road.
    There are so many things my son can’t do because he was abused the first time around (yes! What would you say if they manhandled your husband this way? Everyone would be shocked!)
    No, the most important thing is NOT to get through the testing TODAY. That’s us adults. Next week is fine.
    The most important thing is that your son have time to find ways, techniques, strategies to take the world on his own terms wherever possible. Being in a hurry is the enemy of us ASD’s.
    The most important thing is that in the future he not feel terror every time you drive by that place.
    The most important thing is that you don’t have to start fully sedating him when there are life-threatening issues that really MUST be done TODAY (anesthetics are nasty for small people). Another important thing is for kids who come after him not to suffer like that.
    You know something about the wheels of the criminal justices system slowly grinding some poor hapless unlucky people to dust.
    The wheels of the medical system are just as implacable. But you have as much power there as you do in a courtroom.

    • solodialogue says:

      You know, I feel pretty bad about the whole thing. Everything you have said is so true. Jessica and I were talking about it this morning and we both think were were so in shock that this was happening and I was so preoccupied with kissing away the tears that I think it just floored us both. I am writing a letter to the hospital today, on my firm letterhead, with appropriate statutory references, about the inappropriateness of its employees. I hope others can learn through my experience but more importantly, I hope no one else ends up having the experience my son did. (PS – Your comments are welcome here).

  8. Tam says:

    Just for future reference, you can put your foot down and say “NO MORE, YOU WILL STOP TORTURING MY SON, I want someone else in here now”… they’ll fight you on it but if you make enough noise they will listen eventually. You should definitely call the hospital and complain to a higher-up. This whole thing is ridiculous.

    In any case, I’m glad he’s okay and yeah, that crap takes forever to get completely out. I hope in the end you find this was worth the struggle.

    • solodialogue says:

      I know!! As I said to Aspie Mom, I think I was just in such shock and so busy comforting the little guy, I just failed in this area. 😦
      I will be writing the hospital to complain. Really seems quite ridiculous in the light of a new day.

  9. So sorry. I hate it that people in the medical profession would treat anyone like that, much less a child. 😦

  10. Broot says:

    I’m glad you’re complaining. *hug*

  11. **Argh!** My heart sank when i saw the blog title, and just got angrier and angrier reading the post. I just really wonder why people go into professions that require a compassionate, nurturing and gentle nature when they clearly have nothing closely resembling that. I’m sorry you guys had to go through that… And man, I didn’t realize getting an EEG was such a big thing. That’s disappointing, but it makes sense, they need to get a reading over time. **sigh**

    • solodialogue says:

      Thank you so much for your support. It was shocking and eye opening at the complete lack of understanding and knowledge in the medical profession about a procedure that should be so common for an EEG tech. Our kids get these more than the NTs get them, I’m sure. Yet, there was not even the slightest iota of understanding of the disability amongst those that did the procedure with my son at this facility. It’s a shame. I’m sure it is not the case at other facilities – probably still within 30 miles of where this one was done. An EEG should not be such a big thing!

  12. Teresa says:

    I’m dumbfounded. What a nightmare of an experience for the three of you. It makes me feel like crying to imagine how violated T must have felt. And then to be bullied and manhandled by these compassionless people is unacceptable. If they believed that they were going to make it better by powering their way through to get it over quickly, they were wrong. It was probably not going to be the most pleasant procedure regardless but approaching it with some civility instead of the bully tactics could have reached the same result without the trauma. I wish that I thought it was an isolated incident.
    The ONLY positive of this experience will come if the results provide useful for treatment.

  13. Kelly Hafer says:

    This has just made me so sad. Karen, you love your son so much. The pain it must have caused you to watch your son suffer. The horrible ordeal for T…oh, how very needless and unfortunate. I don’t know why the medial field seems to have a disproportional large number of uncaring people – especially when people are IN NEED of compassion, understanding and respect more than ever today. Please lodge a complaint. This must be noted.

    Disclaimer – I know there are many overworked, underpaid medical professionals “doing their best.” Unfortunately 1) their best sometimes isn’t good enough, and 2) they need their own blog support group. This is not that place right now. This is for T and the lovely ladies in his life! 🙂

    • solodialogue says:

      Thanks Kelly. You so have it right about how painful it was to watch this. Especially the restraint and his little red face crying out for help. It broke my heart. There are tons of supportive, smart wonderful medical professionals. We had the opposite. Complaint letter completed!

  14. Lizbeth says:

    It makes me sick to know there are people in the medical field like this. Sicker to know I was in charge of them for I don’t know how many years and due to their tenure and union association we were helpless to get rid of them. I’m sorry, so sorry, you had to go through this.

    I had to take Alex in for a strep test the other day and it took 3 people man-handling him. And after he bit the Q-tip in half I put an end to it. One of the RN’s eye-rolled and made some snarky comment on the way out. I FLIPPED OUT. Called her every name in the book and to the best of my knowledge said, No one -eye rolls my son. EVER.”

    See?? Probably best you stayed quiet.

    And I later found out one of them has a kid in my Lizzy’s class. Another reason to have shut up.

    • solodialogue says:

      That’s right… this is your neck of the woods, isn’t it? It’s just weird that we got the short stick on this procedure. I wish, wish, wish that you’d been with me on this one!! Love how you handled the nurse! I admire your strength and “advocacy” for Alex. You’ve got my number in case you need bail right? 😉

  15. Karla (Mom2MissK) says:

    I also felt my heart sink when I read the title of the post. How I was hoping that you’d get a tech with even an ounce of compassion! Sigh. It’s just not fair, is it? We work so hard in our own lives and jobs to do right by the people we work for (call them clients, customers, whatever), only to be confronted by incompetence at every turn when we need services ourselves.

    It also makes me glad we canceled the needless EEG ordered for our own Little Miss. My own EEG experience all those years ago was not so bad, but reading about how things went with T make sme much more wary!

    Here’s to hoping that you, Jessica, and especially T are at peqce tonight and that the results of the EEG are worth all this pain!

    • solodialogue says:

      Thanks girl! I’ve just had the dark cloud over me lately, haven’t I? I really think it’s a matter of ignornace and complete insensitivity to a special needs child. Ridiculous, really. I don’t want to discourage you from getting an EEG. I got it because I believe it may be very valuable in determining T’s treatment. I wanted to let everyone know about what to expect – here’s your worst case scenario, so all of you can be fully prepared when you go and ready to shout out at the techs. Jessica and I were just like deer in the headlights, shocked and then dealing with the little guy so unable to kick some rear ends in our usual style… 😉 You can always call me if you decide to get Little Miss an EEG and want the low down but Aspie Mom has given some great tips on how to handle this kind of situation!! (Hope you are feeling better!!)

  16. WOW. My heart breaks for you. I don’t know how you did it. I was born and raised in Northern CA (Sac) and sometimes, that old Ghetto UN-fabulous mom comes out. I think her and I would have gone nose to nose. How utterly DISRESPECTFUL to you AND your son. Totally unacceptable. Not all places are like this. Our first attempt, like yours, was NOT at a childrens hospital. I am guessing that makes a HUGE difference because our second attempt was at Bronx Childrens and Tommy never whimpered once. He sat through it all. Though he couldn’t go home with his wires. He was attached to the wall for 5 days lol He had “extension cords” that allowed him to roam. I hate hearing these guys STILL going through such BARBARIC ordeals. I hope your letter sparks a CHANGE with that place. And, hopefully your doc will have the necessary readings so that T won’t have to do this again.. at least for a while.

    • solodialogue says:

      Northern Cal is where I am, girl! When I think back on it – even as I wrote it, I was wondering why I did not call her out… Yes, I do… my son was there. What could I do? We will definitely go to a different facility if he ever has to do it again!! There is a children’s hospital near enough. It’s just crazy that I would have to even consider it in 2011. The only thing I can hope is that they spend some time training their staff to understand autism before doing any more of these!! Thanks for your support!

  17. ElizOF says:

    I’m so sad and angry for you and I admire your patience under such horrific circumstances… Ugh! 😦

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