Monday, November 4, 2013

Epilepsy Awareness Month - dealing with the EEG

As epilepsy is a piece of Little Miss M's diagnostic picture and November is Epilepsy Awareness Month, you will be seeing a few posts in regards to epilepsy and seizures. This is a path that so many people walk.  We feel it should be talked about and shared, and we look forward to reading your comments. Today's post is about the EEG. Such a useful test for many doctors; such a nuisance for many parents, and such torture for so many children! I have lost count as to the number of EEGs Little Miss M has had. The number is quite high when you consider the Video-EEGs or Long-Term Monitoring, the short EEGs, the ambulatory EEGS, and for fun we'll throw the sleep studies in as well! Since seizures were such a big part of Little Miss M's clinical picture, when both her little sisters had suspicious movements (now known to be caused by reflux), they were given EEGs as well. So what is an EEG? Why is the test used? And most importantly - how do we make it bearable for kids, especially those with major sensory needs?

The EEG is a test where electrodes are pasted or glued to the scalp to capture brain-wave activity. The EEG or electroencephalogram is painless but can show different types of seizures, if there is a seizure focus, and even if there is brain damage. As KIDSHEALTH.ORG says: Normal electrical activity in the brain makes a recognizable pattern. Through an EEG, doctors can look for abnormal patterns that indicate seizures and other problems. Interestingly, Little Miss M has not had a seizure while hooked up to EEG in a very long time. However, her background and electrical activity show that she is prone to seizures. The short EEGs are usually done when the child is sleep-deprived. This is to ensure that the test, which is usually about 45 minutes long, captures the child's brain waves in both awake and asleep states.

Sleep deprived EEGs are tough. I can recall having to keep Little Miss M, at three years old, awake until midnight, and then we had to wake her up at 4am to drive three hours to the hospital. If I knew then what I know now, I may have scheduled things a little differently. During that instance, I remember making gingerbread houses at 10pm with a deliriously tired toddler and then waking her up way before the sun to run like crazy. I believe that was the same trip where we bought her a milkshake on the drive up (at 7am) just to keep her awake for the ride! 

During the EEG, your child may be asked to open their eyes and close their eyes. They will likely be given a hyperventilation test.  We've always done this with a pinwheel, blowing in and out very quickly. And, they will be most likely be given a photo-sensitivity test where lights are flashed in their eyes at different frequencies. I'm not a huge fan of the routine EEG for Little Miss M as her seizures are difficult to predict, but I can pretty much guarantee they won't happen in a 30 or 40 minute recording (although they did when she was little). However, this test was very useful for Z-Baby. At about four months of age, she was having large, full body jerks in sleep transitions. While we knew the startle reflex was very normal at a younger age, this seemed to be getting more intense as she got older. I had captured a video and showed it to our neurologist who promptly got the baby in for an EEG. She had the jerks during the EEG, and they were not seizures. The routine EEG was plenty long to capture these frequent events. We were reassured these were not seizures; however, when she continued having them at 9 months of age, we did admit her for a 24-hour monitoring period. And as she continues to have them at nearly 18 months of age, I'm certain re-evaluation is in order in the future.
The most useful test for us is the Video-EEG, but it means admitting your child to the hospital and pretty much having them "chained" to the bed for the length of the recording. The advantages to this type of test are that the doctors have a video recording to match up with the EEG tracings. So if the child has a seizure, the doctor can look at where it originates in the brain and in the body. This is useful for treatment and diagnoses. Another way we've completed the test is called the Ambulatory EEG. This is just as it sounds. The child is hooked up and then sent home for a certain amount of time - usually 24 - 48 hours. With both the Video-EEG and the Ambulatory-EEG, there is a push-button to mark events on the brain wave recording, allowing caregivers to alert doctors to issues they are seeing and questioning.
In all forms of EEG the electrodes must be pasted or glued to the patients scalp. The scalp is first measured and marked with a washable crayon-type pen. Each spot is then washed and the gel-like substance is applied. The electrode is then either pasted on with a thick, creamy paste and covered with tape, or it is glued on with a very strong smelling glue and then dried on the scalp with a powerful blow-dryer tube. Of course, these are my mom terms in describing the process to the general public. I realize each of these items has actual names and all of them have purposes, but I am relaying them here in the same way I describe them to Little Miss M. Each electrode is covered and usually poked to provide access for additional gel. The head is usually wrapped to ensure little fingers don't pull off any electrodes. Some hospitals will put the wire pack in a backpack and some don't. The backpacks are often quite large, so I always bring a cloth headband or hair tie to connect the straps of the backpack. I have also taken to packing a small toddler size backpack that has a strap across the front. This makes it easier to allow the child to use the bathroom or for them to at least get out of bed and stretch their legs. Each hospitals policy is different, but this is our experience.
I've done EEGs with all three kids. K-bear was three months old for her first, Z-baby was 4 months and Little Miss M was a year. The babies are tough; there is no reasoning with them, and most babies really dislike having their heads touched. Swaddling helps as it provides external pressure. Knowing that it really isn't hurting them, helps a lot too. Most of the kids will scream their heads off and then fall asleep, which is what you want during the test anyway. As Little Miss M got older, we had to find more distractions. We still swaddled her up until she was about three. I would gently lie my body over hers, holding her hands and talking sweetly to her. We'd put on a favorite movie and try to distract her. Bubbles, stickers and light-up toys were all great distractions. As she got older, I would promise a new app, if she made it through without screaming, or some other prize. Now, at almost eight years old, Little Miss M will contently sit through an electrode application as long as she has the iPad in her lap or the mobile Wii unit in her room. It takes a lot of patience on the parents' part, and it truly helps to have a compassionate and kind nursing staff and child life staff.
We found that showing Little Miss M each thing we were going to do and giving her pieces of her own helped a lot. A good friend also makes VEEGPANIONS - cuddly stuffed animals with their own EEG hook-ups. This helped Little Miss M so much, as she could actually see what was going on her head and her Minnie Mouse had them too. For more information about VEEGPANIONS or to request one, you can email the  VEEG FAIRY and she'll help you out! Be creative, and make sure you tell your little one what is happening in language they can understand. Be certain to talk to the techs and nurses about your little (or big) one's special needs. As we know everyone's tolerance and understanding is different. With Little Miss M's diagnostic list, people often expect her to be difficult, but when I explain to them how to work with her, and I facilitate a calm and comfortable environment, they are clearly surprised by how smooth the process can be. 

Here is some advice for the end of the EEG. It can hurt getting electrodes removed, especially if your child has a lot of hair. Sometimes the tape gets stuck in their hair and removing it pulls on sensitive little heads. Often the glue gets dried in their hair and is difficult to remove. I often bring baby oil with us and grease up Little Miss M's head once the electrodes have been removed and as much glue or paste has been removed as possible. I, then, shampoo and condition her two or three times once we're home and will even bring a wide-tooth comb into the shower with her to comb through her hair while there is a lot of conditioner in. It's not an exact science, but it does eventually come out. We've even used acetone behind her ears to get the glue off her sensitive skin. Inevitably, she ends up with red marks around her forehead, but they do go away. 

The EEG: such a necessary diagnostic tool for doctors, such a pain in the neck for parents and such an annoyance for kids. If you've been told your child has to have one, try to make it as painless as possible. Why not browse Smart Apps for Special Needs and download a new app as a reward for tolerating this procedure. If you have any thoughts or suggestions related to EEGs or epilepsy, we encourage you to leave them in the comment section below. 


 Amanda is a mom who believes promoting Epilepsy Awareness is an extremely important part of finding better treatments and cures for all those who battle seizures and their ramifications. 

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