EEG, MRI: My New Alphabet

With our daughter's new diagnosis of Epilepsy, we survived the first rounds of these tests: EEG (electroencephalograph) and MRI (Magnetic Resonance Imaging).

The EEG was relatively easy. We brought a bag full of toys and stuffed animals. However, we ended up just occupying her with Youtube videos of Veggietales :). The procedure went as follows:
They dipped each electrode into a vaseline type gel and attached them all over her head a few on her cheek and shoulder. The they lightly wrapped her head with gauze to keep it in place. They turned on the camera, to record what Lilly was doing during the procedure (i.e., sneezing, or coughing in case that caused a different brain stimulation.) About 5 minutes in the Tech used a strobe light to test for light sensitivity seizures. The device had three different speeds. Lilly wasn't impressed by this light disturbing her show  :). However, she continued sitting still. We were instructed to keep our forearms on her chest and fists on her face to keep her in place. It was a lot less aggressive as it sounds. We applied minimal pressure, just to remind her to stay still. After 25 minutes we were good to go.

The results were normal.

Next was the MRI. Since Lil is so little they had to use anesthesia to make sure she wasn't going to wiggle during the procedure. We fasted that night and morning...however, Little Miss snagged a veggie chip. Luckily it was only one. We made sure to keep her occupied, because it is not an easy task keeping food from a growing toddler. We made our way over to the facility. This is where the story gets to be a bit of a bummer. We told them our mistake of letting Lil have a veggie chip. They informed us that it would be okay as long as it was just one. I believe the nurse mistook me to be a flippant mother and began to burden me with the idea that if she had more than one chip that she could die due to food getting lodged in her during the anesthesia. So that sent me on a whirlwind of emotions. Guilt and Fear plagued me for the next 45 minutes as she went on to have her procedure. I didn't care what the prognosis was, I just wanted her to wake up. Of course she did, but holding back my tears for those 45 minutes was more difficult than holding a plank for 5 :). We loaded her up with food and headed home.

The results came back Friday and we had to wait till the following Monday to get them. Luckily we were able to find out that she didn't have any tumors, but needed to go in to see her specialist to go over the pictures.

Lilly has been diagnosed with Temporal Lobe Sclerosis. It is a common diagnosis in children with epilepsy. Her right side of the brain has scarring, or is underdeveloped. This is good because she is right handed, meaning her language development in on her left. So this will have no impeding effects on her speech development.

Where we go from here:
Lilly will continue on her medicine until she reaches the cap. If she is continuing to have seizures, then she will start another therapy. If she fails that one too, she will be a candidate for brain surgery. We would need to travel to UCSF (thank goodness it isn't far). There they will map out the exact location of where the seizures are stemming from. They will make a small incision and remove it. The bonus of this procedure is a 90% chance she will never have a seizure again, her brain is still developing and may compensate for the missing area, and it is a fairly routine procedure due to the common diagnosis. It would be an hour procedure, but we would spend a few days in the hospital. Lilly will also have at least another EEG and MRI before this.


Though this is scary and overwhelming to know my child may need brain surgery, I can't help but be grateful that this is all we are dealing with. To know that she is still laughing, hugging, smiling and dancing, is more than I could ask for. We are so blessed!! Perspective always helps :).

Thank you for reading! And I hope you will continue to follow us on our journey through Childhood Epilepsy.





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A Diagnosis: Epilepsy

This post has been a long time coming. I've hesitated to write, probably mostly out of denial. I just wanted to share our experience in hopes that it may help, enlighten, and unburden me and others. At the beginning of the year we experience our first seizure with Lil. You can read more bout it here. What was diagnosed as a febrile seizure (even though she didn't have a fever) I was able to cope and hope that that was our first and last experience with them. 

Unfortunately...that hasn't been the case.

Almost 4 months later she had another one with my husband. He didn't experience the first one, so it was quite a shocker. After seeing our doctor, we were sent to a specialist. He ordered an EEG and an MRI. Two weeks later, she had another. We saw the specialist and he put her on medicine (a generic of Keppra) and diagnosed with Epilepsy. This diagnosis, though scary, is a broad one. Any child who has experience more than 1 seizure has epilepsy. Somehow I find comfort in this.  

Her EEG was that following week and luckily it turned out normal. All praises to GOD!!

And then another one this morning.

Although it is frustrating and at some points completely overwhelming. I have to keep perspective in place. Our sweet girl is healthy, vibrant, and such a love. It is easy to get caught up in the "diagnosis" of it all and become boggled down by the appointments and such. I'm so grateful for her health. We continue to pray over her and trust in God's protection and love. Its so easy for me to forget to be thankful for health. It's those simple things I'm reminded of that makes me remember how lucky I am. Though this diagnosis now places a label on our family, I vow to not let it weigh us down. 

My sweet little one is more than I could have asked for. Her love and temperament is sweeter than honey and her laugh is more joyous than Christmas Day. It is in these things I know that she will overcome. And that brings me much comfort.

I also just want to share a bit of information that can be helpful if this ever happens:

1. A visit to the ER is under your discretion. I believe that our two trips were very important for our well being and kept me more at ease knowing she was getting looked at. The following two seizures we did not take her to the ER because her recovery was normal.

2. It is common for children to experience "staring spells." The child with be awake but limp, possibly foaming at the mouth. MONITOR THEIR BREATHING!! We typically take Lil to a comfortable position, talk and encourage her in a soothing voice and check her breathing. It can sometimes take a few minutes for them to come back. During this time they may be listless, have a labored breath, not blink.

3. After a seizure, it is very common for them to fall asleep. This is encouraged. We find that when she went to the ER she was much more fussy because she was being poked and prodded. 

4. Seizures are common and mostly go undiagnosed. 

5. Track your child's seizures and what was going on. I will be doing this soon. It is a great record in the event it is needed.

Thank you for reading and please share with anyone who may have experienced this. I would love to chat :)

 

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