Electrode Placement is no Picnic.

I was nervous all day.  There was no school.  Instead, ABA worked with my son trying to prep him for the EEG.  The social story was read to him.  He wore his little hat and was not allowed to take it off like he usually does.

 Close to 2 p.m., out came the Flexeril capsule I was given by the neurologist to calm him down for the electrode placement.  I was told to give it to him about a half hour before the electrodes were put on.  I broke it open, put it into some applesauce and fed it to him.

Now, here’s the deal.  The boy hates anything on his head.  He does not like hats, glasses, earphones, combs, brushes, nothing.  Nada.  He hates having his hair shampooed.  He gives me a tirade of baby swear words, “Screwdriver!  Let’s count!  Hammer!”  are his latest swear words during shampoo, towel drying and combing. Get a blow dryer near the boy and he will run to the next county.

So combining the world of wet head and blow dryers with something wrapped around the head was a recipe for certain meltdown disaster.  Everyone knew.  Thus, the muscle relaxant, the social story and the promise of a toy afterward.  Since the hubs is prepping for yet another trial (this one will be without me), Jessica was my backup for today’s festivities.  And let me tell you.  Jessica deserves an award.

Pre-insanity... T is getting sleepy.

At first, we were all calm and waiting to see if the medication was going to make a difference.  I noticed it almost immediately.  Jessica poo-poo’ed my observations at first, saying it would take awhile to work.  Then, she started to see it too and realized that without the outer coating of the capsule to dissolve, the medication was working a lot faster than expected.

We headed to the local hospital where the electrodes would be adhered to his head.  Now, here’s the deal.  My son is five (5) years old.  He’s big at 50 pounds and nearly four feet tall.  As I registered him at the hospital, Jessica took him to the bathroom.  (I think he’d been holding it all day).  When she came back, we all waited.  He started out trying to play his iPad.

Getting very, very sleepy...

Then, he started showing some serious sleepy.

Asleep on the waiting room chair...

Then, he asked for mama to hold him so he could sleep.

I think he was laying on the rest of my hair...

Then, finally around 2:40 p.m., the EEG tech called us back.  When we got into the room (I carried the little giant)  I laid him down on the gurney and he was totally passed out.  Instead of starting right away, the EEG tech got on the phone, yapped to somebody about something completely unrelated to my son, hung up, and spaced out herself, looking at a calendar on the wall.

Out cold after I laid him down.

I suggested she take advantage of my son sleeping to get started.  She looked at me kind of funny – almost in a fearful way, and then she started taking measurements and roughly marking his scalp with a green marker.  I asked her if that marker was going to come off.  She did not explain anything voluntarily.  She looked at me like I was an idiot and said, yes, it was a water-based marker.  She marked a spot just in front of his ear on each side of his face and then used a tape measure to take a reading from ear to ear over the top of his head.  She seemed to have difficulty reading the number.  She did it about five times.  Then she started marking down his head midway and various spots around his scalp, all over his head.

Marking the scalp.

As she was marking him, guess what?  He woke up.  And he freaked out.  He sat straight up, eyes wide open because he did not know where he was.  We spoke gently to him and got him to lie back down.

The little guy, as you all know, has a lot of hair.  Made no difference.  The tech doesn’t need it cut.  She just worked around the hair.  She had a bottle of goopy white glue and spotch some out on the areas marked on his head.  Then she adhered the electrode, which looks like one of those round little silver batteries that cost a fortune for the 30 cent toy you buy at Dollar Tree.  On top of that, she put this piece of gauze that’s been soaked in some kind of clear cold thick goop on top of the electrode.  The whole thing touched me a few times as I sought to protect the little guy’s ear.  It felt like a cold piece of slimy algae.

Then, as if that’s not enough sensory overload for an autistic five-year old child, she used a tube that blew air and forced the air all over this goopy, stinking mess to dry and adhere it to the scalp.

Repeat.  26 times.  Slowly.  With screaming, freaking out, sensory overloaded half-drugged with muscle relaxant child.  Get right next to his ear so he can freak out extra.

From the time he woke up he was crying, full-on tears, and asking for Mickey Mouse Clubhouse, Wubzy, Dora, and blue, green and orange Camaros and trucks.  In between these requests, which I was frantically hunting down on his iPad, he would yell “Clean, clean,” to have Jessica or I wipe away his tears and wipe his nose.  At the same time, we were trying to hold down his legs and arms while two EEG techs held his head and only one of the two did the wiring.

Guess what again?  Toward the end, the tech said that she could have used a “papoose”.  Something hanging on the wall – like an x-ray apron that was heavily weighted and would have held him down.  Yeah, thanks a lot.  That was fun.

And another guess what?  She encouraged his meltdown by asking him about colors when he was repeating colors as a soothing stim in a highly intense situation.  She asked, “What color is the sky?”  What the hell?  If Jessica and I hadn’t been holding down his limbs, I think one of us would have punched her.

The tech attached the wires to the box, two wires to his back, tied the wires together with tape, and wrapped the whole thing, wires, and my son’s head with kind of a gauze stocking thing.  The box was placed in a backpack and he has to wear the backpack everywhere until he goes to bed… Who knows what will happen while he is sleeping with it?

Still upset. Just getting up...

The whole thing took from about 2:45 to 4:05 p.m., an hour and 20 minutes.  They told us 30-60 minutes.  The hat used to prepare the little guy?  That was the least of our worries.  You want to prepare your child?  Put cold goop on his or her head and blow it dry with some tubing next to their ears.  Sound like fun?  Jessica and I walked out with this look on our faces:

 The whole electrode placement has (knock on wood) been the worst part so far.  After dropping Jessica off at the local sanitarium to recover, I took the boy straight over to Toys-R-Us.  He totally earned his new truck.

He has touched his head probably 10 times in the last four hours, which really has not been bad.  Just before 8 p.m., he was sitting at his little table (where I write the blog) with me.  He looked at me and said, “We saw the EEG tech today,”  He touched his head very gently, like he was patting himself.  I wanted to cry.  What a beautiful sentence.

Such a brave and sweet boy.  After all that, I hope we get answers.  I’ll know in mid-October.  Hopefully, if anyone else has to go through this with their autistic child, this post will help prepare you.  It’s no picnic.

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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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22 Responses to Electrode Placement is no Picnic.

  1. Kelly says:

    Sweet Jesus, Joseph and Mary. Karen. I am stymied. Dumb-founded. Which part of that story stands out as the crappiest: craptastic EEG tech? The length of the proceedure? The emotional toll that experiences like this place in our hearts and souls? We need to start a gang. A gang of marauding autism moms who go out and kick the butts of every non-helpful, rude, douchey medical “professional” we have ever had the bad luck to come across. Dear God. Hang in there, Karen, T and Jessica!

  2. Robert Hutchins says:

    I feel your pain!! Had to do a 72 hour EEG at the hospital with my son when he was 19 months. We had to try and keep him in front of the video camera. Talk about a freaking nightmare! And not to mention the stupidity of the neurologist, who simply ruled out seizures, in our case, then said he needed no further neuro consults. It was like hello!!!!!! What about the 72 hours of video showing his total balance issues where he could not walk like a normal child his age, etc…..? We got him into another neuro in Austin, Texas and within an hour of checking him, observing him and talking to us, she diagnosed him with encephalopathy, PDD NOS and sensory processing disorder and speech delay. He says very few words, but will have a conversation with us, but it is mostly not understandable. We live in South Texas, Corpus Christi area and one of my main goals is to get better recruitment of medical professionals who deal with autism. We have 2 neuros in a city of approximately 300 thousand people.

    I did get a great sense of satisfaction when I looked up at the video camera and saw them trying to find my son around the room. Even though he had balance issues and fell alot, he was still very quick and when they would find him, he was quick to move out of the camera’s view, so they would have to re-pan to locate him again! LOL

    Luckily, now, at age 26 months, he is able to walk and run without all of the falling down. With mine, we go through phases with the meltdowns. We will go through 2-3 weeks with multiple meltdowns each day, where he seems to be un-happy with everything and then 2-3 weeks of great days where he is happy, smiling, laughing and engaging and very few meltdowns at all. We try the willbarger’s brushing protocol, but most of the time he does not want it, so we don’t push due to fear of sending him over the edge and causing a meltdown. My son is also a very finicky eater. We have to supplement with pediasure and multi-vitamins and v-8 juice to make sure he gets what he needs. And I reflect back to a year ago, when I knew absolutely nothing about autism, because I knew no one dealing with autism and I think, Wow! What an eye opener, what a completely different life! And my son is one who was meeting milestones up to about 9 months to a year and then regressed. I think that he regressed to a point to where he even kind of freaked the pediatrician out. Initially, he thought that he had mild cerebral palsy. The neuro we got into in Austin has been pretty dead on with her diagnosis and assessment of what he needs. With all of the therapies, he has made progress, just very slow progress. Our OT uses the floor time model and that has really produced some positive results.

    Well, I am rambling, off topic!!!

    Robert
    @STXAutism

    • solodialogue says:

      Thank you for commenting, Robert. Your son is so young yet! You are incredibly organized and informed for someone who is pretty new to the diagnoses that you have been given. I cannot believe that in a city of 300,000, you have only two neurologists? You must mean specialty neurologists in the field of autism? There are so many different types of encephalopathy – I hope that it is the kind that is responding to treatment. I cannot imagine how scary it must have been for your son to go through the EEG at such a young age – but then I wonder whether at that age, if a child is more fearless. I’m glad your son is getting treatments that are helping him to make progress. Early intervention is so important!!

  3. Aspie Mom says:

    OMG!!! That tech needs a letter in her file. DO NOT ALLOW NEAR SN KIDS!!
    THIS IS SO HORRIBLE I can’t even type. Next time please please go to a Children’s Hospital. Drive for hours. Talk to people until you find some who know autistics.Don’t stop looking until you find someone.I HATE it when medicos refuse to stop ;and SEE our kids! We have to deal with the damage for years afterward.
    They should have prepped you and him, had a more controllable short acting sedative. They should have let him “practice” with his ABA and they should have been ready for you the second you got there.
    You CAN get medical care like this for your child.
    I’m SO SO sorry.
    I get so angry when I have to allow someone to hurt my child. The oath is:
    FIRST DO NO HARM!

    • solodialogue says:

      All of these things that you suggested are very valid and valuable tips. We had no understanding of the real procedure based upon the one page sheet we were given for the actual EEG. It did nothing to prepare us well enough. MY GOSH! We were coming from the Autism Treatment Center for goodness sakes! We really should have been given a well-prepared social story to read to him, together with information to prepare him for it. These health care providers really have very little feeling for the terrifying experience it is from the perspective of the child – and the heartbreak it is for the parent to watch the child go through that terror without being able to soothe the pain. Changes need to be made!!

  4. Tootleslady says:

    Worst day ever!!

  5. Grace says:

    Omg. Sign me up for Kelly’s gang of marauders. I’ll bring the flaming torches.

  6. Flannery says:

    Wait, you mean this is what this person does all day long, every single day of the year, and somehow, someway, she DIDN’T GET THAT IT’S A BIG DEAL TO A KID WITH AUTISM? I hate people, I swear.

    But that was a great post, despite the ordeal and the stress. Poor little guy looks like a mummy at the end. Hey, there’s an idea…you can pitch that as a halloween costume for him! Wait, you probably don’t want to wrap him up again!

    Crossing fingers that you get some helpful answers from this!!

    • solodialogue says:

      I do not understand the complete lack of feeling we’ve been getting from the medical profession lately (unless you consider the condescending looks of pity).

      Lol! He did look like a mummy. There is NO way he will be wrapped up again! Thanks for your crossed fingers. I’m crossing mine too…

  7. Karla (Mom2MissK) says:

    Ugh! What a sorry excuse for a tech! I mean, come on!

    You know, instead of flaming torches, we should rustle up some of whatever gives that tech the worst nightmares…. Spiders do it for a lot of people…. How about them? Then, we’ll restrain her, dribble the spiders over her head and remove every possible means she has of comforting herself… “hey tech! What color is that spider dangling over your nose?”

    Seriously, I never cease to be amazed at how poorly so-called medical professionals are trained. Let’s all hope that tomorrow you get a tech with some sense.

  8. Jen says:

    Poor T! And poor Mom for having to watch this helplessly. The papoose would’ve totally helped out through this process! Stupid tech lady. I just came from the ear doc today where my little guy had to be strapped in to have his ears cleaned out with a vacuum thingy. Our pediatrician recommended asking for the papoose after seeing his reaction to a routine ear exam. It really did help and I thought about it as I was reading. Again, stupid tech lady!

    • solodialogue says:

      Thanks, Jen. Sadly, I must report that the papoose thing was used today and he was actually worse with it than without the day before. I think tranquilizers for everyone involved except the tech may have been warranted! 😦

  9. Wow… OMG, that tech!! unbe-freaking-lievable! I would have wanted to strangle her soo much!! Also, I’ve been meaning to get Taz to a neurologist so he can have an EEG too… **yikes** does not sound like fun at. all. What a great post. And I think I just fell in love with your little T (even more so). Okay, his swearing? *Killed* me!! My son does that too, only we have “broken”, “on Monday” and a kind of doggy bark. He also gets really upset by tears and wetness on his face and cries for someone to clean them. Your lil guy was a total rock star!! And so were you and Jessica. And he looks adorable in that little sock!! As for the halloween ideas, you could just use that same sock (maybe stuff it a little so it’s more pointy), paint his face and hands blue and dress him up as a smurf? Just sayin

  10. Broot says:

    I would totally talk to your doctor and tell him what happened, and then write to whomever’s in charge of that place and complain again!! If they’re going to work with kids like Tootles, they should have training!!! I feel for you, I really do. **hugs**

  11. I hope you rewarded YOURSELF for having to go through that! holy cow. I’m scared to read the next blog!!! Poor little guy. (((hugs)))

  12. ElizOF says:

    Good Lord! You have been through a lot… I would like to smack that tech for being such a brute. Please don’t let me swear on your blog but is she f#$^*&(&% crazy? You sweet son is courageous and what he did at the end is so touching… So, will he be wearing this till mid October? Please keep us posted.
    Finally catching up again… where did the time go? Phew! 🙂

  13. Pingback: “S” is for Seizures. | Solodialogue

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