Ben's seizure count is ever so slowly creeping up each month that goes by. He is still having seizure free days, Thank God. He is most definitely teething, the larger teeth both top and bottom coming in. Of course, Chet and I desire a stronger seizure control that can weather these storms.
His EEG report came back, "somewhat better than last time, no right side abnormalities, left side abnormalities persist but less frequent than prior, no sub clinical seizures seen," The left side abnormalities are spikes that indicate seizure activity could happen.
Lab results came back fine, he is still making very high ketones, higher than they like to see at our Keto Clinic, however glucose, electrolytes...are still okay. His medication levels (the two medications that can be measured) are low and are considered barely therapeutic.
Our Keto neurologist is on vacation for two weeks, so Chet and I elected to hang tight until she returns to discuss our next step. We are definitely keeping the diet for now, but would like to try and achieve complete seizure freedom for Ben, balancing this with giving him the optimal opportunity to develop. He is sooooooo trying to crawl, but his tone is still very low. So once again, we wait, prayerfully he will not take any sharp downward turns.
When peace like a river attendeth my way, when sorrows like sea billows roll; whatever my lot, thou hast taught me to say, "It is well, it is well with my soul."
Though satan should buffet, tho' trials should come, let this blest assurance control, that Christ has regarded my helpless estate, and hath shed His own blood for my soul.
My sin...O, the bliss of this glorious thought, my sin...not in part but the whole, is nailed to the cross and I bear it no more, Praise the Lord, Praise the Lord, O my soul!
And, Lord, haste the day when the faith shall be sight, the clouds be rolled back as a scroll, the trump shall resound and the Lord shall descend, "Even so"...it is well with my soul.
Friday, August 30, 2013
Mining For Gold
This may or may not look like our herb garden...but it is actually a gold mine, and gold has been found!!! Hooray! : )
It is a process...you have to collect the dirt, sift out the larger rocks (which can be broken open later with hammer, proper safety equipment worn), then "panned" out...if you look really close you can see the gold! : )
Then it is always interesting to take a closer look...
It is truly a joy to watch with what enthusiasm James works at his projects.
My son, if thou wilt receive my words, and hide my commandments with thee; so that thou incline thine ear unto wisdom, and apply thine heart to understanding; Yea, if thou criest after knowledge, and liftest up thy voice for understanding; if thou seekest her as silver, and searchest for her as for hid treasures; then shalt thou understand the fear of the LORD, and find the knowledge of God. For the LORD giveth wisdom: out of his mouth cometh knowledge and understanding.
From Proverbs 2, and my prayer today for James, that he may with even greater enthusiasm treasure up the word of God.
It is a process...you have to collect the dirt, sift out the larger rocks (which can be broken open later with hammer, proper safety equipment worn), then "panned" out...if you look really close you can see the gold! : )
Then it is always interesting to take a closer look...
It is truly a joy to watch with what enthusiasm James works at his projects.
My son, if thou wilt receive my words, and hide my commandments with thee; so that thou incline thine ear unto wisdom, and apply thine heart to understanding; Yea, if thou criest after knowledge, and liftest up thy voice for understanding; if thou seekest her as silver, and searchest for her as for hid treasures; then shalt thou understand the fear of the LORD, and find the knowledge of God. For the LORD giveth wisdom: out of his mouth cometh knowledge and understanding.
From Proverbs 2, and my prayer today for James, that he may with even greater enthusiasm treasure up the word of God.
Monday, August 26, 2013
Intractable Epilepsy, Yet...
From Webster's Dictionary:
1. Intractable: a) hard to manage; unruly or stubborn b) hard to work, manipulate, cure, treat, etc.
From Epilepsy Foundation (.org):
Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy.
Intractable: Seizures that do not respond to medications. Thirty percent of people with epilepsy have these kinds of seizures. Also known as "drug resistant." The International League Against Epilepsy (ILAE) defines drug resistant epilepsy as "a failure of adequate trials of two tolerated and appropriately chosen and used AED schedules (whether as monotherapies or in combination) to achieve sustained seizure freedom."
Most authors report that antiepileptic drugs provide complete control for more than half of all patients with epilepsy, and reduce the number of seizures in another 20 to 30 percent. The remaining 20 percent do not respond to current medications and their condition is termed "intractable" or "refractory to treatment." Some of these people may have other treatment options, such as surgery, or (in children) the ketogenic diet.
Ben's diagnosis...still...after 9 different medications, 2 endoscopic brain surgeries, 5 MRIs, a dozen or so EEGs, 3 different genetic tests, extensive blood work, metabolic testing, ketogenic diet...and there will be more to come because Chet and I must press on, even though the way is hard, until we have gone the distance.
My constant prayer these days is:
If any of you lack wisdom, let him ask of God, that giveth to all liberally, and upbraideth not; and it shall be given him. But let him ask in faith, nothing wavering. For he that waverth is like a wave of the sea driven with the wind and tossed.
There is nothing like a morning seizure to toss me about like a wave of the sea!
Yet...
how sweet that word is in the Word of God:
Although the fig tree shall not blossom, neither shall fruit be in the vines; the labor of the olive shall fail, and the fields shall yield no meat; the flock shall be cut off from the fold, and there shall be no herd in the stalls:
Yet I will rejoice in the LORD, I will joy in the God of my salvation. The LORD God is my strength, and He will make my feet like hinds' feet, and He will make me to walk upon mine high places.
Heavenly Father, please make Benjamin's feet like hinds' feet that he may walk upon Thy high places.
1. Intractable: a) hard to manage; unruly or stubborn b) hard to work, manipulate, cure, treat, etc.
From Epilepsy Foundation (.org):
Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy.
Intractable: Seizures that do not respond to medications. Thirty percent of people with epilepsy have these kinds of seizures. Also known as "drug resistant." The International League Against Epilepsy (ILAE) defines drug resistant epilepsy as "a failure of adequate trials of two tolerated and appropriately chosen and used AED schedules (whether as monotherapies or in combination) to achieve sustained seizure freedom."
Most authors report that antiepileptic drugs provide complete control for more than half of all patients with epilepsy, and reduce the number of seizures in another 20 to 30 percent. The remaining 20 percent do not respond to current medications and their condition is termed "intractable" or "refractory to treatment." Some of these people may have other treatment options, such as surgery, or (in children) the ketogenic diet.
Ben's diagnosis...still...after 9 different medications, 2 endoscopic brain surgeries, 5 MRIs, a dozen or so EEGs, 3 different genetic tests, extensive blood work, metabolic testing, ketogenic diet...and there will be more to come because Chet and I must press on, even though the way is hard, until we have gone the distance.
My constant prayer these days is:
If any of you lack wisdom, let him ask of God, that giveth to all liberally, and upbraideth not; and it shall be given him. But let him ask in faith, nothing wavering. For he that waverth is like a wave of the sea driven with the wind and tossed.
There is nothing like a morning seizure to toss me about like a wave of the sea!
Yet...
how sweet that word is in the Word of God:
Although the fig tree shall not blossom, neither shall fruit be in the vines; the labor of the olive shall fail, and the fields shall yield no meat; the flock shall be cut off from the fold, and there shall be no herd in the stalls:
Yet I will rejoice in the LORD, I will joy in the God of my salvation. The LORD God is my strength, and He will make my feet like hinds' feet, and He will make me to walk upon mine high places.
Heavenly Father, please make Benjamin's feet like hinds' feet that he may walk upon Thy high places.
Thursday, August 22, 2013
Some Photos
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| Who is that cutie patootie? |
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| This is our exercise room, we each have our own ball for bouncing. |
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| This is my photographer. James takes most of our photos. He will take off with the camera and come back a few hours later and the camera card will be full! |
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| Favorite pastime this summer. |
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| Teething!!! |
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| I had to add this one because my camera card will predominantly be filled with photos like this one. This is James' version of LEGO's 'Museum Heist'. |
Wednesday, August 21, 2013
Breakers
Benjamin started the ketogenic diet back in early June. He became seizure free after one week. One day shy of one month I sent out a "universal" e-mail to family and friends sharing with them our joy and gratefulness...the very next day he had his first breakthrough seizure. We are now officially three months into the diet, which is typically the "trial" period that keto centers would like you to commit to in order to determine if the diet is working for you. We have had three "series" of breakthrough seizures. The first two times I reacted...the first series, we added back medication we had been weaning; the second, we upped the ratio from 1.5:1 to 2:1...both changes stopped the seizures...or did they? In both instances the seizures ceased the very day I initiated the change. We have now had a third "series" of breakthroughs...and we have done nothing...and they stopped.
Sooooo many thoughts.
It is very difficult to remain still in the midst of a storm, my first reaction is to "Batten Down the Hatches!" It is against my nature to "wait and see," but our experience with epilepsy is it has been a slow and agonizing process of wait and see." I am thankful to the Facebook support group, Ketogenic Parents ROCK!!! It is there that I read over and over again how teething can cause breakthrough seizures and was encouraged to stay the course with the diet. Did I mention Ben is teething something fierce?
We are gathering what information we can for when he has a series of breakthroughs we also see an increase in coreoathetoid-type movements with him. This time around we are also seeing a strange arm...I don't even know what to call it..."twitch," which we believe may also be seizure activity. So he had a routine EEG yesterday, and today we will go for bloodwork.
Do I think the diet is working? Definitely. I have to remind myself, often, (this diet is a lot of work!) that the fact I am concerned about breakthrough seizures is because the diet is working. Ben has never been seizure free prior to this diet. Since starting the diet and giving his brain a break from daily seizure activity, he is able to reach and grasp for toys, smile and laugh, sit up in his bumbo without falling backwards, play games with me like "peek-a-boo" and "fishy face," he can maintain eye contact so much better and respond to his name...there is no doubt that the quality of his life and ours is so much better.
My "diet" this last week has been from psalm 62:
My soul, wait thou only upon God; for my expectation is from Him. He only is my rock and my salvation: he is my defense; I shall not be moved. In God is my salvation and my glory: the rock of my strength, and my refuge, is in God. Trust in him at all times; pour out your heart before Him: God is a refuge for us!
Sooooo many thoughts.
It is very difficult to remain still in the midst of a storm, my first reaction is to "Batten Down the Hatches!" It is against my nature to "wait and see," but our experience with epilepsy is it has been a slow and agonizing process of wait and see." I am thankful to the Facebook support group, Ketogenic Parents ROCK!!! It is there that I read over and over again how teething can cause breakthrough seizures and was encouraged to stay the course with the diet. Did I mention Ben is teething something fierce?
We are gathering what information we can for when he has a series of breakthroughs we also see an increase in coreoathetoid-type movements with him. This time around we are also seeing a strange arm...I don't even know what to call it..."twitch," which we believe may also be seizure activity. So he had a routine EEG yesterday, and today we will go for bloodwork.
Do I think the diet is working? Definitely. I have to remind myself, often, (this diet is a lot of work!) that the fact I am concerned about breakthrough seizures is because the diet is working. Ben has never been seizure free prior to this diet. Since starting the diet and giving his brain a break from daily seizure activity, he is able to reach and grasp for toys, smile and laugh, sit up in his bumbo without falling backwards, play games with me like "peek-a-boo" and "fishy face," he can maintain eye contact so much better and respond to his name...there is no doubt that the quality of his life and ours is so much better.
My "diet" this last week has been from psalm 62:
My soul, wait thou only upon God; for my expectation is from Him. He only is my rock and my salvation: he is my defense; I shall not be moved. In God is my salvation and my glory: the rock of my strength, and my refuge, is in God. Trust in him at all times; pour out your heart before Him: God is a refuge for us!
My Hope Doesn't Float
My hope doesn't float. When I think of floating hope, images of a yellow rubber duckie being tossed by every wave and carried along by every wind and current, comes to mind. Epilepsy descended upon us as a tempest, out of nowhere, and it continues to storm in our lives. I thank God that I have an anchor that holds. It is from these words that I chose to name this blog:
"We might have a strong consolation, who have fled for refuge to lay hold upon the hope set before us: which hope we have as an anchor of the soul, both sure and steadfast, and which entereth into that within the veil;" (from Hebrews, chp. 6)
And I have fled for refuge to my God....I am still flying each and every day....only to find that He's already Got Me!!!
"We might have a strong consolation, who have fled for refuge to lay hold upon the hope set before us: which hope we have as an anchor of the soul, both sure and steadfast, and which entereth into that within the veil;" (from Hebrews, chp. 6)
And I have fled for refuge to my God....I am still flying each and every day....only to find that He's already Got Me!!!
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