Not so long ago, I was asked what to expect during an overnight stay in an Epilepsy Monitoring Unit. In other words, what to expect during an overnight stay (or the dreaded multiple-night stay) for an EEG with your child. I originally posted this elsewhere but felt this was good information to have listed here. Please feel free to add your own tips, experiences or thoughts below. Another who stumbles upon this might find your insights just as helpful. (I am also posting at 5 Minutes for Special Needs today, you can read that post here).
12 Tips for a Successful 24-48 Hour EEG
Your child is headed in for a 24 – 48 hour Electroencephalogram (EEG). It’s likely to be you or a spouse that spends the majority if not all of the time in the hospital with him. You’ve thought about the necessities, what would be needed to stay a night more in a hotel or similarly, a short time away from home. You have the bulk of the EEG stay figured out; entertainment and relief are most of the name of the game, but here is a list of 12 important things to know about the procedure:
- The leads are cold. Having the leads put on is liken to having ice cubes plastered to your bare scalp. Some kids are either communicable and old enough to know to breathe and get through it after a little time (it takes some time to place all the leads). You may be required to keep your child severely sleep deprived to ease the process. This can mean waking your child at midnight and keeping them up through the appointment time. Still other children require general anesthesia for lead placement.
- If anesthesia is needed, many times it will be due to extreme anxiety, agitation and aggressiveness when leads are attempted to be placed. Some doctors will be able to make this determination upon your pre-procedure visit, but in many instances, this won’t be determined until after an attempt is made. If your child does need anesthesia, attempt to secure an early procedure time due to eating restrictions. Be prepared for the ‘coming out’ of anesthesia. Many times, in children with developmental delays, particularly children diagnosed with autism, this produces an aggressiveness and disorientation that requires the anesthesiologist to re-administer anesthesia to bring your child out slower, which reduces or eliminates the aggression and disorientation.
- The leads will be wrapped with gauze. You’ll have teach him not to touch his head too much. When the glue that they use dries, it’s itchy. There should be a standing order for Benadryl. While it won’t effect the EEG results, there’s no need to let him be uncomfortable through the whole thing. It’s a good idea to begin a dose almost immediately.
- What’s available on the unit? Check with the unit to see what they have available in the way of games, books, videos and toys you can check out for the stay. Do they have a DVD player for home movies or an in-house movie system that will keep your visual kiddo calm?
- What are the expectations? Will he be able to leave the room? Or is he to remain in it during the entire time? What time is your doctor planning rounds the following day to release you, or when will a determination be made about whether you’ll have to stay longer? Is the room windowed? How loud is the unit? What accommodations can be made for any sensory issues?
- Relief. You’ll know this best….but also consider transitions. If you’re leaving and returning with others coming and going will this disturb him in an already difficult situation? Is it better for you to remain with him? Nurses on these units will give you breaks any time you ask and routinely check in with you to see if you need one…there are volunteers who do this as well (again, check). A nurse giving you a break would be more expected of a routine change or transition than another family member or friend. That person isn’t supposed to be there, the nurses are.
- What to pack. Yes, bring pillows, any favorite items, weighted blanket, etc. Favorite toys, movies in case there is no in-house movie system (a movie player if you have one), books and other things to keep him going, warm pajamas, one set of extra clothes and slippers for both of you. Books, magazines, a laptop if you have one (they should have wifi) and anything else for you is a must. You’ll end up with duffle bag full of all the ‘extras’.
- Food and Special Diets. If your family follows a special diet, don’t expect that the hospital will have everything. Bring snacks and foods you know he’ll eat and like. Order a meal or what can be used to help complete a diet-specific meal as soon as you get settled, if not while you’re getting settled. Especially if it’s during a general meal time, it could take them a while to get it to you. You may have to pay for your meal, so bring cash. Nurses may have vouchers for your meals, so don’t be afraid to ask for them.
- Medications. The hospital may ask you to bring all regular medications in the original containers. Verify with your doctor that medications should still be taken as usual, as some medications may need to be avoided. Also ensure that the hospital has the most up to date medication and dosage information for your child.
- Removal of leads can invoke panic, since your child likely didn’t enjoy having them applied. However, an oily rub that dissolves the glue is gently used to take the leads off. The leads will either fall off or they’ll very lightly pull off; the most tender spots are on the skin around the forehead and face. At the end, you’ll get some shampoo that helps to get rid of the oil and excess glue left in his hair.
- Keep your child’s needs and wants in the forefront. This will be confusing to him and any kind of communication available between the two of you is imperative. Picture cards for a non-verbal child is a great way for him to have a say in what he’d like to have around him to make him comfortable.
- Perspective. This is a necessary procedure. A necessary part of helping your child challenge his challenges, overcome obstacles and only results in information that will help you and his doctors find the correct solutions for him. However rough it is, now you WILL get through it, and so will he.
Should you keep these things in mind, you’ll find yourself in a more comfortable, confident position walking through the doors for this procedure.
Do you have any other helpful hints that have worked for you during your 24 hour EEG stay?