Warning: this is an extra long and wordy post for me, but it’s a story I want to tell.
When I first started this blog (almost 2 years ago), my sister Becky was the first in my family to join me. We shared (and still share) a lot of the same friends via blogs. Around the same time she started her blog, her life was changing a lot more than she knew at the time. This last Sunday marked the 2 year anniversary of her second son (and middle child) Thatcher’s first seizure. His seizures are called partial focal seizures. That means that he typically has them only in his face (focal to the face) and that he doesn’t lose consciousness (partial). His seizures have left him unconscious several times, but it’s not typical.
After his first seizure, it was a month before the next came. After that, they came much faster! They actually waited 5 months before medicating him and only did so because they believed his safety was at risk. They tried two different medications and only watched his anger and aggression grow to what they called “Thatchie Road Rage”. They didn’t know what was really going on…everything he spoke was through gritted teeth, and temper tantrums became violent toward every member of their family. Their doctor (at the time) told them that he had behavior problems and that it had nothing to do with the seizure disorder. After a couple of psychiatrist appointments, they decided to switch Neurologists. The new Doctor (who they LOVE!) wanted all of his tests redone (MRI and EEG). It was only then that they got the diagnosis of:
LKS, as it’s known, is a rare seizure disorder that keeps your brain in a constant state of non-convulsing seizure while you sleep. Thatcher’s brain never achieves REM sleep (rapid eye movement sleep). Essentially, his brain never rests. His seizures are caused by electricity in the left frontal lobe of his brain – that is where your language and behavior are housed. When that part of your brain is rest-deprived long enough, it causes regression in development. This is where the syndrome gets really complicated. Briefly put, you lose your language because the auditory connection from your hearing to the processing center in your brain is severed. Your hearing is fine, but you can’t process what you’ve heard. Worst case scenario: you can go mute. Some LKS patients never regain their speech. Behavior regression is manifested in many ways: anger fits, failure to complete simple tasks, etc. With Thatcher, it’s easy to forget that giving him a multi-step command like: “go get your shoes on, go to the car and get your seat belt on.” is something that he simply CAN’T do. It’s so difficult for Becky to see Thatcher take these steps back when he could do all these things with ease a few months ago.
By November of 2008, Thatcher would glaze over when spoken too. Becky often complained that he “just couldn’t hear her”. He began drooling profusely and was always tired…making him mad all day. At the end of the month, he had his first Tonic-Clonic (Grand Mal) seizure in the middle of the night. Scared to death my sister called 911 and 5 (burly!) firemen were in her bedroom at 4am on a night her husband happened to be out of town (party!?).
So, after the diagnosis of LKS came, they panicked, found a specialist (though no one is really a specialist for LKS because it is so rare) and flew to the Mayo Clinic in Minnesota this last December. The specialist confirmed the LKS diagnosis and helped them with a treatment plan. The treatment options are slim, risky, and all still very experimental. They chose the treatment with the fewest side-effects.
That treatment worked great while he was on his medication, but you don’t stay on the medication very long. The theory is short term use should provide long term effects. They are now in the process of tapering him off of the treatment, and currently his symptoms are flooding back.
So, the abbreviated version of this story is…
2 years of seizures
1 Cat scan
2 MRI’s
7 EEG’s including 2 overnight EEG’s
4 Doctors
4 medications
38 Doctor appointments in 2 different cities
After all this, they are in the exact same place they were back then. A little more educated, but still with the same worries.
The main reasons I wanted to share her story are:
- it’s real and it’s happening right now to my sister and my sweet nephew, Thatcher, whom I love.
- I want to help raise awareness about LKS.
- blogging is known for sharing only the pretty, happy times in our lives, leaving out a lot of the sad and hard reality we deal with.
- Many of you know Becky, but haven’t had the opportunity to hear this story.
- it can be therapeutic to know that your story is ‘out there.’
She told me that each time she shares his story she feels stronger and more patient. This is no small thing, because there are a lot of days when she has neither strength nor patience.
My heart was sad when Becky announced her exit from blogging, and then it was broken when I found out why. I really don’t think there’s anything worse in life as a mother than watching your child suffer and struggle. I think of Becky (and Thatcher) often and you all have my hope and prayers for much better days ahead.
Kami, you did a beautiful job explaining and telling this story.
Thank you….
She is lucky to have such a supportive sister who loves her.
I hope that things get better for Thatcher and family.
OK, Grandma cried when she read this. He is one tough, loving, sweet, naughty little boy and we all pray that more gets done to research this syndrome. Love you Kami for that post.
Wow, I didn’t know she was your sister. How sweet are you? You guys are lucky to have each other.
Wow, that is no small thing to deal with! I used to be an EEG tech and it’s so hard to watch the kids suffer with seizure disorders. Neurology is just so dang complicated! Thanks for sharing her story – I hope they find a treatment that works soon!
I can’t even imagine a trial like that. Nothing scares me more as a mom than the thought of my kids being sick…really sick. But I am glad that your sister has a lot of love and support from family because there’s nothing like it to help with heartache. And might I add that he is one cute little boy!
That has got to be so hard for your sister to see her son have to suffer like that. I am sure so frustrating as well to not see much progress. Thanks for sharing her story. I hope that her cute son will be able to fight this and find a solution that works for them!
That breaks my heart. I had no idea that there was something out there like that. Life is pretty precious.
This is so heart wrenching. I’m so sorry to hear about Thatcher and hope the power of the Atonement will embrace and enable everyone to endure the difficult. May miracles {please Heavenly Father} yet be seen.
He’s an incredibly handsome little boy! Sometimes we’ll never understand the trials we are given. I hope they are able to find the treatments and help that will afford him the best life possible. Your sister must posses strength beyond measure.
This is so hard and I’m so sorry you are all going through this.
I love your whole family so much and I hope the support that comes from Kami’s post gives you some support.
Good job on that one Kam. Trying to see through tears right now. Thatcher is such an incredible sweet and caring little guy and it pains all of us to see him and Beck go through this. We love them and pray for them.
i love becky and it makes me sad when she hurts–she has a huge heart and deserves love to come back to her–
becky, we are all behind you still! love you!xoxoxoxox
(and your sister kami as well!xo)
the best blogs are happy- yet, ALSO, filled with real people with real trials and problems—nobody wants all rainbows just the same as nobody wants all misery- it's the mix that make it real. my heart goes out to becky and her family.
thank you for enlightening me and making me aware of something, though i have heard of, am not very well informed of.
give your sis a hug & a squeeze for me
Wow! I have never even heard of this before. That just breaks my heart. What makes me even more sad is to think that just as he was misdiagnosed as just having behavioral issues – there are probably kids out there who have this and haven’t been diagnosed. Imagine how frustrating that would be for them and thier parents. Thanks for sharing this – you never know who may read this and need to know it. Vela had a seizure a couple of weeks ago and it was SOOO scary. She has been fine since, but the doctor really couldn’t give us any answers. I can’t imagine the stress your sister and her family must be under. I will pray foy them. Thanks again for sharing this.
Oh wow I’m sure that is a lot to handle…I will keep them in my prayers!
Holy Cow. I too have missed Becky via blogging, guess it’s time to have another Kangaroo Zoo gettogether eh? Anyways, I digress. I can’t even imagine. Some of these symptons sound a lot like my little brothers disease-how awful for Becky and her cute little family. Please let her know she is in my thoughts and prayers-if there is anything she needs that I can do-pass it along that I am here. Thanks for sharing this story Kami. It is true, by sharing the “Tough” hard times, it helps others and gives strength. Thinking of all of you. Sorry for this uber-long comment…Adrian
your family will be in my thoughts I so hard to feel helpless when it comes to your children.
Kam, I knew something was happening with Thatcher, but I had not heard the diagnosis. I cannot (nor do I actually want to) imagine how hard this must be for them. Ugh. Wow. Becky is a strong, amazing woman to be able to handle the stress that she must feel every second. We love her lots, and I hope that their family finds relief and some more answers very soon.
I stepped into the blogging world too late to meet Becky, but after your post, I love her and my heart hurts for her and sweet sweet Thatcher.
Hugs, good thoughts, and prayers headed her direction!
thank you for sharing this story kami.. my heart goes out to your sister and Thacker. i can’t even imagine. but I do know what it’s like to watch someone you love like your sister, so go through something really hard. i’m sure your support is getting her through every day. my thoughts and prayers are with her and her family.
Oh, Kami – your sweet sister and her little boy will be in my prayers. Thank you for sharing his story.
My sister in law has a little girl who has been having seizures for about 6 years. They still don’t know what is wrong. I am going to share this information with her.
XOXO
Jen
Wow. My heart really goes out to her. She is lucky to have such a wonderful family for support.
Yes, we love Sarah! I will tell her I know you. Wish you were still up in these parts.
How good of you to share her story and raise awareness. Can’t imagine how they are feeling. Let us all know what we can do to help. . .sounds like there is little info out there for those who are affected by LKS.
What a wonderful sister to share Becky and Thacher’s (and their family) story. My heart aches for their struggles and the unknown they are going through. I will add my prayers to the rest.
I had several grand mal seizures as a kid. They were always in my sleep. I've been through countless MRI's EKG's etc and I never really had sleep overs as a kid because I was too afraid to sleepover and be embarassed. Thatchers sounds much worse and I feel so awful for him. I grew out of mine by age 12& hopefully his will magically go away.
Thanks for sharing this Kami!
Your family is so great and tell Becky I am sorry they are going through this.
Love me some Becky – and Thatchers story makes my heart hurt. She is amazing
I can only hope that your family finds the answers through their journey. Thatcher’s story is eye opening and thank you for sharing! {hugs}
Dear Kami -
My sister-in-law is Marie LeBaron from Make-and-Takes. She forwarded the link to this blog post to ask if I could be a support to your sister in any way.
My son, Noah’s story is on his blog http://www.ketokid.blogspot.com. Our epilepsy story is the first post ever on the blog from Jan 08. Although he doesn’t have the same diagnosis as your nephew, the lives of families that deal with living in a constant state of epilepsy emergency,trauma and stress is common for us all. Please share with her that I am happy to talk, listen or just consult with her at any time as she traverses the jungle of the neurological unknowns. My email is bcholtfamily@sbcglobal.net
My prayers are with her and her family. Epilepsy children are a special and sweet touch to our lives.
Sincerely,
Cathy Holt
Been letting this story sink in for the past couple days. My heart goes out to Becky and Thatcher and have thought of them often.
You did a wonderful job of telling the story, and am grateful to know a bit more.
Hopes, prayers and hugs to you Beck!
My heart goes out to your sister. I’m grateful to you both for sharing the story and I pray this reaches other’s who are where she was 2 years ago.
I can’t even imagine the fear they live with. That sweet little boy…he’s such a cutie. That story makes me feel awful complaining about ANYTHING. I will pray for them often!
Becky and Dave, be strong….we love you. Great awareness Kami!
Kami I just ran across your blog because of DIY glitter toes and then just kept reading. This story is sooo touching and such a tough situation. I'm sorry for you, your sister and your nephew. The reason I write is becuase I've tried to start a blog and just can't get myself to do it because my 1 year old had a stroke at birth and that is what consumes my life so I feel like my blog would be soo much about that and I'm not ready to share all of my feelings! This was a great post thanks for informing others!