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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