Jill and I head out bright and early tomorrow morning.
Actually, it will still be dark out. I’m thinking 5:00. To be there in time for our 10:00 slot.
I realized this week as people said “Wait, what are you doing?! Is everything okay???” that I did a lousy job of explaining what was happening. I feel like I’ve talked and talked and talked about our extended trip to UCLA Children’s Hospital…I mean, really…I’m sick of hearing myself talk about it!….but it appears that I’m talking about it to some people, but maybe not all the people.
So just a simple post explaining what’s up. Nothing to share. Nothing inspirational. Just a great, big FYI.
Jill has epilepsy. But Jill’s epilepsy is complicated and different and frankly, unusual. Epilepsy doesn’t really present the same way in any two people, but generally speaking, when people have seizures they last anywhere from a few seconds to a couple of minutes and stop on their own. At worst, they respond quickly to “emergency meds”. 70% of epilepsy patients can have their seizures under control (meaning they don’t have any) with medication. That leaves 30% of patients with uncontrolled epilepsy. Uncontrolled defined as having a seizure even when you are on meds.
Jill doesn’t have seizures very often. Typically 2-4 per year. She takes two different medications twice a day, and has since she was 11 months old. Yet, she still has seizures several times a year. Uncontrolled.
But the real kicker is the duration and severity of these seizures. In her case, the shortest seizure she has ever experienced was 45 minutes…with the longest lasting almost 5 hours. Yes, hours.
In each case, we must call 911…ride an ambulance…and watch as emergency room doctors administer more and more medications, all the while getting more and more nervous.
Whenever a seizure lasts more than 5 minutes it is called Status. You want to avoid status. Status is bad. Because when you reach status, your mortality rate drops (or is it increases? Whatever, I can’t bring myself to look it up. But you know what I mean.).
Jill’s shortest seizure was 45 minutes. That’s 9 times longer than the moment people start freaking out. And that’s the SHORTEST.
As you can imagine, this puzzles her doctors. It worries her doctors.
So, our (wonderful) neurologist referred us to her old colleagues at UCLA. There, she will undergo extensive testing, including but not limited to, MRIs, CT Scans, PET Scans, and maybe even some genetic testing.
But the biggie is the 24 hour video EEG. A couple dozen leads will be glued to her scalp and she will then be continuously monitored both through the brain waves picked up by the EEG leads…and the video.
We will take her off her daily meds. We will sleep deprive her. (This means a maximum of 4 hours of sleep at night and ZERO napping. This is torture. No, actually. It’s not natural and it is cruel. But we have no choice.)
Now. This gammut of testing isn’t entirely unusual for those with uncontrolled seizures. When the basic course of treatment (which includes some educated guessing and process of elimination), fails…doctors need hard and fast data. They need to see what is actually going on in that noggin. So, the 24 hour video EEG happens.
But in the vast majority of cases, this process is a 3-4 day hospital stay. Because in the vast majority of cases, a person with epilepsy will have a seizure within a few days of being taken off their meds.
But this is Jill. And she doesn’t seize all that often. Ever. It’s just that when she does, it’s always a very big deal. A very scary big deal. A very, I can’t even type it out big deal.
To give you a sense of how unusual her case is, the HEAD of the UCLA Pediatric Neurology Department…a kind, elderly man…a man who has been doing this the better part of his life…a man nearing retirement…the head guy at a leading research facility…says “So, I have to warn you: this one time, I had this one girl who had a similar seizure pattern. She and her mom were here for 3 weeks before she had a seizure. So get comfortable.”
Now, when the shock of 3 weeks wears off, note the ONE girl this ONE time…in all his years, and all his patients, he’s only seen this ONE other time.
Of course.
(Our own neurologist has said that Jill is one of the most complicated cases she’s seen in 25 years of practice.)
We actually did this very thing at this very place 2.5 years ago
. Owen was a wee 3 month old. Who was exclusively breastfed. We were told it would be a 3-4 day stay. Standard. So I took the newborn and the girl. But 4 days later, no seizure. 7 days later, no seizure. We had to go home. Owen was too little…my milk supply was drying up from stress…and no one had planned time off work any longer. We called it. Went home with no more information than we had walked in with.
So.
We don’t really know how long we will be gone. But Andy and I have planned for three weeks of mama being 200 miles away with the One. He will be single dad for the first week (with our phenomenal church family bringing him and the 3 dinner every night)…and then his mom and aunt will come to help the remainder of the time.
We are praying she has a seizure sooner than 3 weeks (a bizarre prayer, no?). We are praying we don’t leave after an excruciating 3 weeks with no information. Again.
I’m sad to leave my family. I will miss the other 3. I will miss my husband. I will be sad at the task of keeping my 5 year old awake to the point of delirium. I hope she doesn’t hate me forever after.
Prayers that we can get the information we need to best help my girl…and preferably in a less than 3 week period.
But silver linings abound. Love pours out from our church family. And her teachers and classroom threw her a party today. Complete with princess balloons, gifts, and handwritten notes.
God is good. Always. No matter what.
(If you want to follow along on our stay, your best bet will be Instagram. I’m not sure if I’ll be able to update the blog, but a quick pic and a sentence of two might be able to be squeezed in.)
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Sending prayers that the best comes out of the worst.
praying for my jilly bean!
Sending prayers, and hugs!
Caryl
So, so, so sorry you have to go through this torture AGAIN! I will be praying for a quick and safe seizure that will allow the doctors to gain valuable information but without any damage to her. And strength for you. Keep holding on.
Sending prayers and hugs, and wishing you cake.
Thank you for explaining. I didn’t get it before. And now, I know what to pray for. Good luck!
Sending prayers to you and your family. May God watch over and bless you all.
Oh Lord Jesus, make your nearness known to Jeannette & sweet Jilly in these coming days. Display your strength…so hard to ask for seizing God but we plead that you would deliver Jill through a seizure to bring clarity and answers. Bring awareness and wisdom down over the doctors and give them insight to the beauty of your precious creation and how her mind works. Shower the depths of your love over Jeannette that she dare not even have to ask if you are near…cup her face to you Lord…give her Glory eyes to SEE you And grant her the riches of your presence in OVERWHELMING abundance. Provide nurses with great compassion, energy and sustenance, gracious MERCIFUL favor and reports of cheer and wellness back home. Bring deliverance and hope in constant renewal be a use you delight in saving your people again and again. How we love you, Lord. Amen.
Praying for your family. And for a a very short hospital stay and the answers you need.
Prayers that she has an observable seizure early on during the hospital stay, one which provides the information needed to successfully prevent and treat her seizures.
I’ll come to UCLA to see Jilly for sure! Keep us posted at END EPILEPSY.org
Would you mind if Nathan wanted to capture a little “footage” ?
Blessings, Susan 310-991-1756
Wouldn’t mind at all! Just be sure and call first so I can brush my teeth. ;)
I cannot even imagine the range of emotions you must be feeling right now. Please know that this stranger in South Carolina is saying many prayers for your precious girl, you (and all those who love her dearly) and the medical staff that will care for both of you. I pray that you feel some of that peace which passes all understanding and that you know that God is so very near.
Prayers for sweet Jilly. Its SO hard to have to pray and hope for a seizure to be able to help our children!?! I pray God grant you peace, Jill safety & lots of love, and the doctor’s the info they need to find answers to HELP her!! God bless!!
Best of luck. No mobile device, so no instagram. At least he has seen one case and thus has a better idea of what to try.
You can still check in on a computer if you go to http://www.instagram.com/jeannettg :)
Thank you!
I’ll be praying for you (being a mother myself and having a friends daughter with epilepsy ). Sounds crazy but I hope Jill has an attack so doctors can finally know how to treat her effectively. I will also pass along to my prayer chain.
God is in control. I pray for peace for you.
Prayers for you and your whole family. My seven year old was in the hospital for a week in January and it was so hard, I can’t imagine what you are gojng through but I pray for peace and strength for you!
Good luck! I’ll be praying for you and the entire family.
Our friend Parker has epilepsy too that did not respond well to drugs and was ketogenic diet too. Have you tried the diet, it totally turned him around.
I just re-read your post about the hospital stay a few years ago. I had forgotten how horrible it was for Jilly and you. Praying for a quick stay and strength for all.
Thinking of you guys! I’m glad its not something more invasive….I remember when Johnny had the similar round of checkups we eventually went home and I think he had his seizure a couple days later. (of course). So while the denying sleep and hoping for a seizure is wrong and hard, the potential information could be so great. Johnny had long seizures at the begining, but now he has a 2-4 30ish second seizures every 10 days or so. And while that doesn’t seem right, he is living a fairly good life, so we just have to rest with that. I’ll be thinking of you guys, and hoping for some good results, it sounds like your sweet doctor is a great guy!
Been following your blog and story, prayers from NY
Sending prayers your way that your daughter’s hospital stay without… her meds …with hope for a seizure that will give the dedicated medical staff the answers to help your precious little girl.
I’m the mother of a brain injured daughter from birth trauma causing her seizures(uncontrolled) and occurring often despite four seizure meds three times daily. I know well the fright of living on the edge …never knowing when they will occur or the injury she we’ll suffer. Since reading this though I feel blessed as she has never experienced what you are dealing with…severity and length of time that your daughter’s seizures are.
I will be praying for you both and the doctors who will care for her.
I am so glad that you mentioned that you, Jill and, Owen had done this before, because I thought I was reading an old post. I hope that it goes quickly, and you are able to leave with some information this time.
Bless your hearts! I’m so sorry that you and your family are going through this and I really hope that you get answers just as fast as possible. Keeping you in my prayers.