(editor’s note: this is one family’s experience and is purely for information only. Your child’s experience may differ)
I wanted to share some information about our experience with my son’s EEG and MRI. Mainly because I searched Google nonstop for hours trying to find some information about how these tests work for a young toddler and couldn’t find much more than a clinical explanation of how they work and why they’re used. That’s not what I wanted when I was nervous about my little monster’s upcoming tests. I wanted to find a mommy or daddy who said they’ve been there and told me what to expect and that everything would be alright. Isn’t that what we all want to know sometimes? So I’m putting it out there for the next worried parent who searches on Google for an EEG or MRI for their little one. I’ve been there, don’t worry, it’s all going to be alright.
What happens during an EEG?
Kaleb did his EEG (Electroencephalography), the test was so much longer than we originally expected. It was about 50 minutes long, after he was all wrapped up and the many many leads were already placed on him.
He was swaddled in a huge blanket and then basically wrapped up and restrained since any movement will alter the test results. Once they had him all wrapped up, he had many leads placed all over his head with goopy glue stuff. He was not a happy camper. There was a lot of screaming and crying at first, since he of course has no idea what is going on. Luckily we had his emergency pacifier handy and they set up a TV for him to watch to keep him distracted. Towards the end they started testing his reaction to different lights, strobe lights, frequencies, etc. He ended up having to close his eyes towards the end because the strobes were getting to him.
Nothing special to do after the test other than be extra nice because we felt so guilty over how sad and miserable he looked all wrapped up. Then comes the fun part, I think we’ll have to wash his hair a couple of dozen times before all the glue comes off his scalp and curls. I leave you with the images that made me feel terribly guilty. Cereal for dinner? Sure thing baby, anything you want <3
Getting the leads placed all over his head. All the colorful wires you see toward the top center of the picture are each one lead attached to his head. That’s a lot of glue to wash out!
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The leads were bandaged to keep them all sturdy and in place. This picture also gives you a better view of how he was restrained for the test. His face and feet were basically the only parts exposed.
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What happens during a MRI?
Kaleb had his MRI with sedation. Mommy WAS going to go to work that day but she just couldn’t leave her boys to do this alone. She is the MRI expert after all. We woke up early and went to the hospital, poor Kaleb wasn’t allowed to eat or drink anything and he signed “eat” and “juice” a couple of times and was getting cranky. Luckily they were playing Disney Junior on a big screen in the waiting room and that kept him fairly distracted. Sedating a toddler for an MRI is a very simple test, but very stressful.
Once we went into one of the rooms they weighed Kaleb (exact weight is very important because that’s how they determine how much sedative to use). They asked us a bunch of questions to make sure he could do the MRI. They then had him change into a yellow hospital gown and keep only his diaper on.
Next step. The IV. The first give him a small injection to numb the area where the IV goes (the top of his left hand). Then they insert the IV into his hand. This involved having to hold him down while he whined “all done” in the saddest voice. Mommy couldn’t bear to look, as she’s TERRIFIED of needles herself while Daddy was as brave as ever.
Then they give him a small amount of the sedative, just to get him to relax, while we go towards the MRI machine. It started working quickly, Kaleb was pretty out of it but still awake. Only one parent was allowed into the MRI room with him while waiting for him to fall asleep. Daddy let Mommy go in with Kaleb because he’s the best. He stood right outside and could see in, but couldn’t see Kaleb’s face once he was laying on the table. They started to give him more and more sedation and he was definitely fighting it for a long time. Kaleb is a bundle of energy after all. Once he finally fell asleep we both had to leave and stay in the waiting room. We had to wait about an hour and a half before he was done and in a recover room.
Time went by soooo slowly. We nearly ran to the recovery room, where we found our little monster okay but very much unconscious.
He was hooked into all the usual machines, checking his respiration, blood pressure, O2 saturation and heart rate. He also had an IV drip to help flush the sedative out of his system. We sat by his side for two hours before the nurse said he should be waking up. We tried to wake him but he just didn’t want to. The nurse finally decided to start wiping his face with a cold wet washcloth and that did the trick.
He was totally out of it, the nurses joked that he was a happy drunk since he kept slurring and mumbling with a smile on his face. Once we were able to get him to drink some apple juice and waited to make sure he kept it down, they removed his IV and let us take him home with us.
It was very hard to carry him since suddenly it was like carrying a very heavy newborn, he couldn’t support his own head. He got very dizzy on the car ride home and was very upset by the time we got him in the house. He couldn’t walk or even manage to crawl without falling over. We decided to put him in his play yard and let him watch cartoons for most of the day. He deserved a break after the horrible day he had. He was screaming bloody murder most of the day until he finally napped. Of course we weren’t allowed to let him sleep more than two hours without waking him. He refused to eat anything other than fruit cups and a banana. We let it be. He went to bed early that night and luckily he was back to his usual self the next morning.
Comments
Meghann Baynon
Our son has Epilepsy. We have had several EEG’s (both in the hospital and Ambulatory) a sleep study and two MRIs in the past two years (yikes). Just a little piece of advice, if he needs to have another MRI in the future and you’re okay with this, ask if they can give him a small dose of mild sedative before hand. I forget the med name, but is’ pink (gosh why can’t I remember it, it will come to me later while I am in the grocery store and I will say it out loud and people will stare). Anywho, it helps with getting the IV in without having to hold him down.
And yes, that glue is so hard to get out! I hope you got the information you were seeking from these valuable tests
Bek
Thanks for sharing!
Stacie Kershner
We’ve done the rounds of EEGs (outpatient clinic, ambulatory and as part of a larger sleep study) and multiple MRIs too. For the first EEG, they wanted my then 4 year old daughter to be asleep because they were trying to diagnose seizure activity. My sweet and stubburn little girl rarely sleeps during the day as it is and never truly napped even as a baby or toddler. She let them do all of the nodes and wires without issue and then proceeded to stare at the ceiling, toss and turn on the bed for an hour. The clinic workers did not stay in the room. The outpatient clinic declared her not to have any seizure activity despite the fact that I said she didn’t go to sleep which the doctor clearly wanted. I had to reiterate this to the doctor when they called with the supposedly negative results because the clinic marked down that she had slept. Luckily the doctor decided it was worth a back-up test and ordered the ambulatory EEG. My daughter wore it home and fell asleep overnight in her own bed with a regular bedtime routine (minus bath). Sure enough, seizure activity caught on the EEG. Thank goodness the doctor went to this next step. We are pretty sure that my daughter was having seizures, waking, and then not wanting to go back to sleep all along, which is why she hated sleeping and napping so much. She sleeps really well now, easily 10 hours straight. She was also having odd 30-60 sec staring spells during the day which have gone away with the seizure meds as well. Her seizures are absence (partial) seizures. Undiagnosed or untreated seizures can eventually lead to a more serious seizure, brain damage, cognitive delay, confusion, injury during the seizure, etc. We are so glad they went ahead with the second test and didn’t stop with the hour long one.
Stacie Kershner
This was a great idea – I am sure other parents new to these procedures will appreciate your effort! I am adding a little more about the MRI part now (EEG above) so a new parent will have as much info in one place as possible about the experience they and their child might have!
My daughter has had 3 MRIs. The first two were similar to the description the author provided here. The third though was after her seizure diagnosis. Since the seizures had not been a problem for the first two and since I had completed the on-line hospital anasthesia form without any additional response or calls from a nurse or doctor, it did not occur to me that being assigned to an MRI facility versus the hospital would be an issue for the third. We took my then 7 year old to the facility which was devoted to imaging (MRIs, etc.), affiliated with the local children’s hospital, and much quicker/easier to make an appointment with. My daughter has developmental disabilities and hearing loss, in addition to seizure disorder diagnosed around age 4. She had not had an MRI since then and needed one before being put on a growth hormone for endocrine issues. We arrived at the imaging center, were immediately taken to a room, and then the nurse came in to ask all of the required questions. When she got to the question about seizures, she got concerned and called in the anesthesia doctor. It turns out that they do not do anesthesia at this facility for seizure and other patients where there is a medical risk that might be caused by anesthesia and the hospital is too far away (where at the hospital they might be willing because they have the facility and personnel on hand if needed). So… we were told we could reschedule (2 months!) or try it without the anasthesia. I was nervous but my daughter stepped up and said she would try. I got to go in for the whole procedure. We explained as much as possible ahead of time, since she would need to take her hearing aids out during the MRI. This was helpful for her because the banging sound of the MRI was not as big of an issue as it might have been for other (particularly SPD!) children. I had the hardest time watching them stabilize her head, arms and legs – she looked like a mini hannibal lector mummy with a cage over her head and straps across her body! But she was quite a champ! They then turned on a Disney movie that she could see inside the machine through a series of mirrors – very cool. They pushed the table about halfway in. She had a bit of a difficult time not twitching her arms and legs so a few of the images had to be taken more than once (each one takes about 10 minutes, if I remember right). So it took about double the time it might have if she could have been perfectly still. BUT she was such a trooper and I was so proud! That is a difficult task for any adult, much less a child with special needs and she did it without anasthesia. Even the staff and nurses were impressed. Lesson learned though that if your child would do better with sedation and has some kind of medical problem, clarify ahead of time whether this might need to be done at the hospital versus an outpatient clinic.
Mommy Monster
“mini hannibal lector mummy” is basically the same thing my husband said about Kaleb when he was wrapped up for his EEG. It was pretty hard to see him like that, he was screaming and crying, he eventually calmed down. Thank goodness for Disney, it seems to entrance all kids!
Mommy Monster
I’m so glad more moms are adding their stories.
Jenny from the Block
Thank you for sharing. He is the such a beautiful boy! If you do not mind me asking, why did he need the tests and how old is he? I ask b/c my 22 month old is not talking still (speech eval coming up) and has sensory processing disorder, and was just referred to a behav. pscyh to see if he is meeting criteria for other diagnosis, too. I am scared a little.
Mommy Monster
Thank you, he is pretty adorable! But I guess I’m just a little biased. He was actually about 24 months old when he had the tests done. The speech delay was one of our biggest concerns, but he also has SPD and some other minor quirks/delays. Our first referral was to a neurologist who ordered all of these tests. We were ordered to do the EEG, MRI and full blood work analysis including genetic testing. His EEG and MRI both came back normal. His genetic blood work did show that he had some gene deletions though, so we needed to see a geneticist.
It’s easy to say don’t be scared, but it probably won’t work. I was really nervous too and I’ve done many of these tests myself. It’s fear of getting a diagnosis, or even fear of not getting a diagnosis. It’s an ongoing process, for me knowing the diagnosis simply helps me figure out what we need to overcome. It doesn’t change much else about my amazing little man.
Mommys Baby
Thank you all for sharing my daughter is three and has a small lump on her collar bone it has been xrayed twice I’ve been told its “normal” “not a break”. I see nothing “normal” about it and refuse to accept that as an answer. I’ve been told the next step will be an MRI I’m terrified. She had some dental work that she needed to be put to sleep for but she was already sleeping when she was given the IV. I can’t sleep or eat I just sit on google reading stories and crying. I’m so scared to put her thru this, I’m scared, we will not know what it is, I’m scared something serious will be wrong.
Mommy Monster
*hugs* It will be okay. Every mom goes through these mini panic attacks over their kids. The MRI will really be far worse for you than for your daughter, the only recommendation I would make is after the MRI wait for her to come out of it. While we were there we saw two parents that were in a rush to leave, they kept picking up their son, shaking him to try to help him wake up. He was such a miserable wreck when they finally aroused him that the nurses had to give him more sedative to have him relax. I would say bring a book or something, but really I just stared at Kaleb and held him hand the whole time while we waited for him to wake up. It’s going to be okay because she’ll have her loving mother with her every step of the way.
Christy
Thank you so much for posting this. I have an EEG scheduled for my daughter in two weeks and I’m so worried. It helps a bit to know what to expect but I’m mostly just terrified.
Mommy Monster
Christy, I felt the same way. I’m not going to tell you not to be scared, that’s impossible. It’s hard for us Mommy’s to see our babies in such a vulnerable state. It’ll be over before you know it, just focus on the reason why you’re doing the EEG. It’s for the sake of helping your daughter. <3
LR's Momma
Thank you for posting! I was very happy to come across this while searching. I love that you’ve included photos, it eases my fears a little seeing what an EEG actually entails. We have an EEG for my son this coming Friday and I had no idea what to expect.