- Ellie is having her MRI on Thursday, which was a direct answer to our prayers. They'd originally scheduled it for October 27 and we hated having to worry for that long. Because of her young age (and propensity for wiggling), the MRI has to be done under sedation at the hospital. Her safety during the procedure is now the focus of our prayers.
- Based on the kinds of seizures that she's having (petit mal) and the lack of other symptoms, the neurologist does not expect there to be any abnormalities with the MRI, but just wants to make sure.
- Ellie has 15-20 noticeable seizures a day and the only way they are noticeable is if I'm in the same room with her and/or interacting with her. The doctor estimates that she's having dozens upon dozens more each day that go unnoticed. Unless you were interacting directly with her, you may not ever notice one of her seizures, but all those seizures in a day in 10-15 second increments sure make for a lot of missed cognizance in a day for her.
- Ellie is back to school this week. The school is holding a seizure training session with all of the teachers that Ellie comes in contact with during a day. They will be trained on how to notice the seizures and how to redirect her when she regains consciousness. They will also be trained on what to do if she ever has a grand mal seizure, which although somewhat unlikely still, is more likely now that she officially has epilepsy.
- Ellie has no idea why she's going through all this. She thinks that a seizure has something to do with the little cough she had last week. We have no idea how to tell her any more than that.
- If Ellie is walking when a seizure occurs, she sometimes clumsily and absently keeps walking, although she's totally unresponsive and unaware of her surroundings. I'm very worried about her playing in high places (like the play equipment at school), but so sad to have to ostracize her in that way.
- It's looking more and more like she has Childhood Absence Epilepsy, which is considered among the most mild and treatable forms of epilepsy. Children often outgrow it in adolescence, although having epilepsy at all makes her much more prone to other forms of epilepsy later in life.
- The doctor has prescribed a medicine for her, which she will start taking twice a day in very small doses. We're a little on the anti-medicine way of thinking, but feel strongly that for Ellie's quality of life we need to be diligent with it. It is our hope that side effects will be nonexistent or minimal.
- Your kind comments and prayers are very much appreciated. :)
- Totally off topic, but, yes, I'm doing strange things with this blog (hence all the missing posts). All will be revealed shortly.
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ReplyDelete- Laura
Thanks Lara for the detailed updates on Ellie. She is such a sweetheart and it is almost better that she is so totally oblivious to everything that is going on in her little body. Many prayers go up each day on her behalf. It is encouraging to hear that this will probably pass in adolescence.
ReplyDeletePoor sweet Ellie, we will continue praying for you and your family. Thanks so much for the update. I've never heard of that, hope it will be mild and she will out grow it.
ReplyDeleteWe will keep your family in our prayers. I hope that she will out grow it. It's so great that the school is training their staff...what a blessing.
ReplyDeleteHi Lara - this is Lia (Kallestad) Laverty. I was in the Blaine ward with your family before you all moved (Ukraine, right?) Anyway, I just wanted you to know if you see Frisco/Richardson, TX on your blog follower thingy that this is me. I found your blog from Andrea Anderson's blog - she, Kristen & Jenny Cottle, and myself used to all carpool to seminary together. Sidenote: I think my mom (Linda Kallestad) had you and Melinda Cottle in a Sunday school class years ago - she talked about what a great bunch of kids you guys were for a long time after that.
ReplyDeleteSorry about what your cute little Ellie is going through. I love to read your blog - your writing is fun and it's good to hear something about your family as what I remember is: all your cute freckles, red hair, and then moving somewhere far away!
Lia
Cute, cute Ellie. I'm sorry that you have to go through this! I pray that the doctors can diagnose and treat Ellie properly and that your family can learn what you need to do to make Ellie as safe as possible. Love you lots!
ReplyDeleteI had no idea this was going on. We will keep Ellie and your family in our prayers!
ReplyDeleteWe will definitely keep her in our prayers!!
ReplyDeleteWe are thinking of you and keeping you in our prayers.
ReplyDeleteIf there is anyone that can handle what it coming...I KNOW it's you.
And Ellie has so much spunk, I am sure that she will be able to handle it too.
xo
Not OUR SWEET Ellie!!! We'll keep her in our prayers. She's a good strong girl...and she is in good hands! LOve you!
ReplyDeleteYou all are always in my prayers!
ReplyDeleteI'm glad Ellie is back at school :)
Definitely let us know how the MRI goes!
I miss you and love you all!
P.S. I love that picture of Ellie! She is so cute :)
ReplyDeleteI read your blog for your awesome family home evening ideas and saw this post today. My 11 year old daughter started having these types of seizures in March. We were lucky to have caught them so quickly. She too was having many seizures throughout the day and many more we were not able to see. She is doing wonderful on her medication and we have not seen any seizures in months. Our prayer will be with you and your family. Its hard to have your child go through something like this but our daughters faith and testimony has grown so much because of this!
ReplyDeleteYou don't know me but I happened upon your blog looking for some FHE helps. You have helped my family in so many ways, the least I can do to give back is to pray for you sweet little one. My prayers are with you and your family at this time. Thank you for all you do for so many of us trying to follow the direction of our church leaders in having weekly family home evening and thank you for inspiring me!!!
ReplyDeleteErin in AZ
my cousin had this and I remember playing with him when he would have a seizure. It was just like you said they just space out and keep walking or moving as they were. He is now in his late 20's and completely grew out of it with no relapse of any kind. I will keep your sweet Ellie in our prayers and hope that it went as well today. Coming out of anesthesia is never easy/fun for these sweet little ones.
ReplyDeleteLinzie
Hi great Lara!!
ReplyDeleteI have been praying and wondering about your dear Ellie. She will continue to be in my prayers and I will pray you will continue to be guided in her behalf. We love you guys!!!! Wish I could be there to help.
Oh, I'm so sorry to hear this! Sweet little Ellie. What a trial for you all. I'm glad you're getting some answers - the unknown can be so scary. We'll keep her and your family in our prayers.
ReplyDeleteEllie and your family are in my prayers.
ReplyDeleteI think it is interesting that we can make good friends through the bloggy world. The other day as we were eating something yummy (and different) for dinner, I told him that I got the recipe from you. "How do you know her?" he asked. I explained, and then I showed him your blog.
I have loved getting to know your family and you through blogs. I will keep all of you in my prayers.
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We are so sorry to hear about Ellie. She is such a sweetheart! We will pray for her and your family. Hope everything goes well!
ReplyDelete