Thursday, May 25, 2017

Seizures, Seizures Go Away, (Don't) Come Again Another Day

Hello Readers. I am beyond sorry that it has been over a year since my last post. As you probably know, we've had our hands full with our beautiful baby boy, Seth. But Kinsley has also had a difficult year related to her seizures. These things combined with the day in day out grind of taking care of two children who need your help to do every single thing ever, means that I just haven't had time to blog.

But, we need your prayers, and I'm finally ready to talk about what's been going on with Kinsley.

In reality, Kinsley's seizures have never been gone. Since her diagnosis of epilepsy began at 13 months old, she's had seizures ever since. However, for about three years, we were able to keep them mostly controlled with medications. This control looked like one to three clusters of seizures per week on average. Most people never saw them because they usually occurred just after she would wake up in the morning or after a nap. Then throughout the rest of the time, she would be just fine. Occasionally, things would get slightly worse and we'd adjust medications or sometimes add a new one in order to go back to our semi-control. Until last year, she was on three seizure medications, each of which was very helpful each time we started it or adjusted it. Each of these medications has side effects, but she was able to adjust to them and go about her "normal" life.

Then, just over a year ago, our neurologist suggested we change one of her medications to a very similar one. The purpose of this was because the one she was using often wears off in effectiveness while the new one doesn't. Additionally, it has less severe side effects. He'd also seen most patients react better to it than the one she was on. He did warn us that it may not work for her, and the decision was up to us. The pros seemed good to us, so we decided to go ahead with the switch. This meant a slow addition of the new med and then a slow wean of the old.

At first things seemed to go well, when we added in the new one, but as we weaned off the old one, things got worse with more seizures than normal. Eventually it was decided that she should stay on the old one in addition to the new one. This brought her to a total of four seizure meds. For a while this worked ok. She still had semi control, if not the best it had been, she was still able to go about life as usual.

About six months later, her seizures increased again. At this point she began to have a cluster or more a day (for those wondering, she has atonic seizures aka drop seizures or drop attacks). Then one day she had 8 different occurrences throughout the day including one that happened during therapy. She was riding a scooter board on her belly and unfortunately a seizure occurred. Her head dropped, she hit her face on the ground, and bit through her lip. She had to be taken to the ER and have it glued together. Thankfully she was fine after that. However, we were worried about the major increase and I called her neurologist to see what we should do to start to get some control over her seizures back. At that point, trying the ketogenic diet was suggested.

Therefore in November, just before Thanksgiving, we spent several days at Arkansas Children's Hospital in Little Rock to get her started on the diet. Initially, we did see some improvement with the diet. After a few weeks on the diet, her seizure activity decreased from 5-8 events a day down to 1-3. That was better for sure. However, over time that seemed to go away. By April she was back up to 5-8 events a day. Also, she suffered some side effects of the diet including stomach pain, and severe constipation which in turn caused lethargy, brain fog, and all around a decline in her quality of life.

This increase in seizures again, caused us to go back to trying new medications. She tried one which was no help.

Last month we saw her neurologist again. At that point we decided to quit the new med and try another. This newer one helped a bit again, but not a ton. For a week or so she had fewer seizures. As of today (a few weeks in with the newest med) she is having 4-5 events a day (FYI when I say event, I'm meaning either one drop or a cluster of drops that occurs within a small time span).

So, our newest path to hopefully controlling Kinsley's seizures is a surgery to implant a device called a vagus nerve stimulator (VNS). This device helps control seizures in approximately 80% of people who receive one. We have no guarantee that it will help Kinsley, but we have very high hopes. We know it greatly improved seizure control for one of Kinsley's fellow MEB friends. That gives us hope that it can work for her too.

The surgery is minor with two small incisions. Side effects are mild and rare. The main one being possible infection. Please pray this does not occur. If infection happens, the device has to be removed and usually cannot be re-implanted.  The only other side effect is a tickle in the throat due to the stimulations. This can cause some throat clearing or coughing at first, but she should adjust to it fairly quickly without discomfort. The stimulator could show us improvement immediately or slowly over time. They say it can take up to two years for full improvement to occur. Of course we are prayerful that she will improve quickly, but also thankful that even if she doesn't, it could still come eventually. Another positive that we are hoping is that possibility of weaning off of some of her medications if this works. For many patients, this is able to happen. We'd love that.

Kinsley's current state is one of sleeping or lethargy most of the day. When she is awake, she is not interested in most things that she used to enjoy. It's difficult to have our girl feeling so badly. And worse to not be able to help her feel happier with the songs, books, swinging, etc that always used to work.

PLEASE, PLEASE pray that this VNS is the answer to our prayers that will turn things around for Kinsley. I'm somewhat at the end of my rope, worrying over her. I try to pray when I feel the worries crowd in and that helps, but I really need there to be some improvement. The stress is getting to me. In all that Kinsley has had to deal with up to now, her smile and happy disposition were what made it all ok. Now that we don't have that, we feel the pain and despair we felt when she was first diagnosed all over again. My prayer is that this is just a season that we will overcome just as we did her initial diagnosis. Please let this be your prayer as well. I keep reminding myself that God IS in control. I'm stuck on my human timeline of the here and now and I can't see the end that God does. I know somehow, in some way He will be glorified through all this and that He has Kinsley's best in his control. Pray for me as I wait on the Lord.

28 
Have you not known? Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He does not faint or grow weary;
    his understanding is unsearchable.
29 
He gives power to the faint,
    and to him who has no might he increases strength.
30 
Even youths shall faint and be weary,
    and young men shall fall exhausted;
31 
but they who wait for the Lord shall renew their strength;
    they shall mount up with wings like eagles;
they shall run and not be weary;
    they shall walk and not faint.

- Isaiah 40:28-31

A rare smile from Kinsley during this time, but even here you can see bruising on her forehead from her seizures.

My sweet babies

15 comments:

  1. You and Luke are giants. I know it is exhausting, frustrating, and acompanied with fatigue. My prayers are for the very best that can be done, and for strength for your day. Love you all and your precious extended family.

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    1. Thank you, Mike. We love you too.

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  2. Having to only deal with Luis' breathing issues for 3 years - and him only having stopped breathing one time and knowing the stress, anxiety that it caused us - I can only imagine how tired you are. This verse gives me strength when I feel weary.
    7 But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; 8 we are afflicted in every way, but not crushed; perplexed, but not despairing; 9 persecuted, but not forsaken; struck down, but not destroyed; 10 always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. 11 For we who live are constantly being delivered over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. 12 So death works in us, but life in you.
    Being Christ, compassionate, caring, empathetic, loving, merciful and faithful is sometimes exhausting, however it is where our center is. It is the very thing that allows us the grace to rest, and peace to recharge, and to know that no matter what our greatest treasures are safe in Him.
    I pray for Peace, His Peace with you.
    Ever so sincerely,
    Keith

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    1. That is wonderful passage to apply to our situation. Thank you, Keith.

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  3. Hey Caroline, I follow all of y'all's posts and blogs. Just read this one. I am going to be praying so much for Kinsley, and for this surgery! That last paragraph where you shared your mommy heart just about broke my own heart. I know that kind of end-of-your-rope stress and it is so very hard. Praying for you too.

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    1. Thank you so much. Your comment brought some tears to my eyes of gratitude for the many who read and pray. That is just what we need. So thank you!

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  4. Caroline, heartbreaking but also hopeful. Praying for this procedure to work!! You and Luke are such amazing parents to your babies. God is faithful. Love you!

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  5. You and Luke are incredible people. Kinsley and Seth have no idea how blessed they are to have you as parents. I am praying so fervently that this implant will work and give that sweet beautiful girl some relief! Also that she can get off some of the meds and get back to her happy self. Special prayers for you and Luke as you wait on God and His healing power. (Which as a mommy that is certainly a huge struggle)
    Love you all so much!!

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    1. Thank you so much, Angela! We love you and how much you care about Kinsley!

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  6. I keep your sweet Kinsley in my prayers and appreciate your update to know just how best to pray for her and for you and Luke. You both are an inspiration and a blessing.

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    1. Thank you, Darlene. The prayers mean everything.

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  7. Caroline,

    I have kept Kinsley and your family in my prayers since the moment I met you guys. I keep up with this blog and hope you know how much I think of you. I am so sorry for what your family is having to endure but I do believe God is in control and Kinsley will see improvement. Congratulations on your newest edition!! I will continue to pray for you all.

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    1. I appreciate the thoughts and prayers so very much!

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  8. Caroline,

    I have kept Kinsley and your family in my prayers since the moment I met you guys. I keep up with this blog and hope you know how much I think of you. I am so sorry for what your family is having to endure but I do believe God is in control and Kinsley will see improvement. Congratulations on your newest edition!! I will continue to pray for you all.

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