Saturday, September 24, 2011

Less Seizures!

This morning when I got Levi out of bed and reached for the notebook I keep his seizure count in, I noticed that yesterday he only had 19 spasms and 9 ticks!  That's amazing!  So today even though we were out and about, I made sure I watched him as closely as possible, and as of right now (8pm) he's had 27 spasms and 2 ticks!  It's amazing!  Please continue to pray that all these seizures will stop completely!  We are certainly feeling all the prayer and thank you all for remembering Levi.  We are praying special blessings on you as well!

Thursday, September 22, 2011

Progress and Neurology Appointment

Exciting news!  Earlier this month we nominated our awesome neurologist, Deepti Chrusciel, for the St. Luke's Faithful Healer Award, and she won!  She is so very deserving of this!  It's a great honor, only 2 doctors and one resident receive this award each year.

We did have a neurology appointment yesterday, but Dr. Chrusciel was not in clinic, so we saw another resident, and Dr. Arun, who we like very much.  We will continue to decrease Banzel until we are completely off of it, and continue to increase Lamictal every two weeks.  We didn't make any changes right now, but are supposed to call in two weeks and discuss beginning to wean down either phenobarbital or keppra.  I will definitely be glad to see him come down off some of this medication!  He takes 5 meds in the morning, 7 at night,  and gets either a laxative or vitamins with his afternoon meal.  At this point he is taking: Phenobarbital 8 mls once a day; Klonipin (clonazepam) .125 ml once a day; Keppra 1.5 mls twice a day; Topamax 6 pills (90 mg) twice a day; Banzel 1/2 pill twice a day; Lamictal 2 mls twice a day; Nexium 5 mg twice a day.  That's quite a list!

We are still seeing progress as we come down off Banzel!  Levi is doing an awesome job of holding his head up.  We are noticing that when we pick him up, he catches his head from falling back, and it doesn't flop forward like it used to.  He is listing to the right a lot, but it seems like he's bracing his head on his shoulder.  For support maybe?  He is sitting up more.  Becky, our vision therapist, brought a Bumbo chair yesterday and, although we had to roll some blankets for support, he seemed very comfy and liked sitting in it.  Today our OT, Diane, tried some different things for support that also worked very well.  We have been feeding him in his highchair now, at least for breakfast and lunch, and this afternoon he sat in it and watched Nick Jr for nearly an hour while I got some chores done.  He only let his head drop forward once!  Also in OT today, Diane made some splints for his elbows so they can't bend while we put him in crawling position so he can bear weight on his arms.  As many of you know, his arms have been very tight.  He really hates this, but he only has to do it for 2 1/2 minutes, and the difference in his arms after such a short time is amazing!  He's not nearly as tight, and is moving his arms much more, particularly his right arm.  Today he actually brought his hand up to his mouth/face and held it there for a long time.  He usually only  has his hand by his face when sleeping on his stomach, so this is huge! He has also started moving the index finger of his right hand.  I'm so excited to have good news to report, and to see him moving forward!  Thank you for the prayers, we definitely are feeling them!  Please continue to pray for Levi!

Tuesday, September 20, 2011

Second Banzel Decrease

So last night we decreased Banzel for the second time.  Since Banzel had no effect until it made the seizures worse, I'm thrilled to get him off of it as soon as possible.  We were in the process of decreasing Keppra when we first began Banzel, and were seeing some wonderful progress developmentally, such as better head control and more movement in Levi's arms.  As we increased Banzel that went away.  However, it is beginning to come back!  In the last few days Levi has been working to hold his head. Yesterday I had some running to do and when I got home, I held my arms out and told him to come to me, which usually gets no reaction.  But this time he tried to move his arms, and was leaning forward to get to me.  What a sweet, sweet thing!  Also, today in therapy Levi was looking at a blue ball, and even moved his hand to touch it a couple times! We are now on 1/2 pill twice a day.  Next week we will go down to 1/2 pill once a day, and then we will be done!  We have a neurology appointment tomorrow afternoon, where we will discuss adjusting his medications.  I expect that we will begin weaning Keppra again.  Meanwhile we still have a week and a half before we can increase the new med, Lamictal.  Please keep Levi in your prayers for NO seizures, and developmental progress!

Our Video Testimony about Levi's Healing

Thanks to our friend Zach from Enjoy Church ( for this awesome testimonial!

Friday, September 16, 2011

Smiles and a Kid Cart

Thank you for all the prayers.  We have definitely felt them today!  Levi woke up this morning with smiles, and he's been holding his head better.  It's been a while since he's done either of those things.  The seizures have been much more mild today as well.  They are not as long, or as violent.  Thank God!

The physical therapists brought a kid cart over for us to use today.  It's pretty neat. It's like a stroller, but it supports the body all the way up to the head, so he can sit in an upright position.  It has a strap that goes across his forehead to keep it from flopping forward, but he learned how to wiggle out of it, and now won't keep it on at all.  A bit frustrating?  Maybe, but for one thing, I think it's pretty smart to learn how to get out of it so quickly, and for another, even without the strap he held his head up on his own!  It did occasionally flop forward, but since the cart supports the torso, it didn't flop too far over, and he was able to lift it back up.  Levi did this many times today.  That is awesome work for his little neck and strengthening those muscles!

Tomorrow is a big fun day at Shaw Park in Clayton sponsored by the Center for the Blind and Visually Impaired, and Delta Gamma Center for Children with Visual Impairments.  Our therapist is from Delta Gamma (we love her!).  They will have food and games, and most importantly, we will be able to meet other children and parents with the same and similar diagnosis as Levi.  He has Cortical Visual Impairment and Alternating Exotropia.  We are so looking forward to meeting others!

We will be taking the kid cart to the picnic so we can see how Levi does, and how it compares to our own stroller.  I think he will like sitting upright instead of always being reclined.  We will take lots of pics and post them later.  Thanks again for your prayers!

Thursday, September 15, 2011

Starting Lamictal

Today we finally got all the issues ironed out at the pharmacy (they lost the prescription!) and started Levi on Lamictal.  Each time we started a new med before I was excited, but now I'm just tired.  I know it's all in God's timing, and He knows the big picture, but I'm really, really ready for the seizures to stop.  It's hard to watch the little guy go through that over and over again, especially when he makes noises that sound like he's hurting. He's a little trooper though, thank God!  I know God is good and He will bring Levi (and us!) through this just as He has everything else.  Just one more testimony to the glory of our God!  Please continue to pray that the seizures go away very soon!  Here are some pics I've been meaning to put up.

Sleeping while Mommy works.

Levi and Daddy at Hazel Dell Civil War Reenactment.

Sleeping in Dr's office before being whisked away on the ambulance.

Sleeping just outside Cardinal Glennon as we wait for Daddy to bring the car.

Levi and Mommy at the Bon Jovi and Journey tribute concert last month.

Wearing the cute shirt big brother Tommy brought me :)

Snoozing in cute fall clothes.

Seizure Scriptures

I've decided to study what the bible states about seizures.  Please join us in looking these over and praying for an end to the seizures Levi has been suffering through.  The last couple days he has had seizures back to back, some pretty strong.  Thank you for thinking of us and keeping Levi in your prayers!

Mark 9:17-29 Coming to the disciples, he saw a great multitude around them, and scribes questioning them. 15Immediately all the multitude, when they saw him, were greatly amazed, and running to him greeted him. 16He asked the scribes, "What are you asking them?" 17One of the multitude answered, "Teacher, I brought to you my son, who has a mute spirit; 18and wherever it seizes him, it throws him down, and he foams at the mouth, and grinds his teeth, and wastes away. I asked your disciples to cast it out, and they weren't able." 19He answered him, "Unbelieving generation, how long shall I be with you? How long shall I bear with you? Bring him to me." 20They brought him to him, and when he saw him, immediately the spirit convulsed him, and he fell on the ground, wallowing and foaming at the mouth. 21He asked his father, "How long has it been since this has come to him?" He said, "From childhood. 22Often it has cast him both into the fire and into the water, to destroy him. But if you can do anything, have compassion on us, and help us." 23Jesus said to him, "If you can believe, all things are possible to him who believes." 24Immediately the father of the child cried out with tears, "I believe. Help my unbelief!" 25When Jesus saw that a multitude came running together, he rebuked the unclean spirit, saying to him, "You mute and deaf spirit, I command you, come out of him, and never enter him again!" 26Having cried out, and convulsed greatly, it came out of him. The boy became like one dead; so much that most of them said, "He is dead." 27But Jesus took him by the hand, and raised him up; and he arose. 28When he had come into the house, his disciples asked him privately, "Why couldn't we cast it out?" 29He said to them, "This kind can come out by nothing, except by prayer and fasting."

Mark 5:1-20 1 They came to the other side of the sea, to the country of the Gerasenes.[a] 2And when Jesus[b] had stepped out of the boat, immediately there met him out of the tombs a man with an unclean spirit. 3 He lived among the tombs. And no one could bind him anymore, not even with a chain, 4for he had often been bound with shackles and chains, but he wrenched the chains apart, and he broke the shackles in pieces. No one had the strength to subdue him. 5Night and day among the tombs and on the mountains he was always crying out and cutting himself with stones. 6And when he saw Jesus from afar, he ran and fell down before him. 7And crying out with a loud voice, he said, "What have you to do with me, Jesus, Son of the Most High God? I adjure you by God, do not torment me." 8For he was saying to him, "Come out of the man, you unclean spirit!" 9And Jesus asked him, "What is your name?" He replied, "My name is Legion, for we are many." 10And he begged him earnestly not to send them out of the country. 11Now a great herd of pigs was feeding there on the hillside, 12and they begged him, saying, "Send us to the pigs; let us enter them." 13So he gave them permission. And the unclean spirits came out, and entered the pigs, and the herd, numbering about two thousand, rushed down the steep bank into the sea and were drowned in the sea.

14The herdsmen fled and told it in the city and in the country. And people came to see what it was that had happened. 15And they came to Jesus and saw the demon-possessed[c] man, the one who had had the legion, sitting there, clothed and in his right mind, and they were afraid. 16And those who had seen it described to them what had happened to the demon-possessed man and to the pigs. 17And they began to beg Jesus[d] to depart from their region. 18As he was getting into the boat, the man who had been possessed with demons begged him that he might be with him. 19And he did not permit him but said to him, "Go home to your friends and tell them how much the Lord has done for you, and how he has had mercy on you." 20And he went away and began to proclaim in the Decapolis how much Jesus had done for him, and everyone marveled.

Tuesday, September 13, 2011

Lethargy, Ambulance, and Hospital

Yesterday morning poor little Levi could hardly stay awake during his breakfast, and went right back to sleep as soon as he was done.  I had noticed that he'd slept deeply through the night, but since he was awake to eat I wasn't really concerned.  He typically takes a nap right after breakfast, so that was not startling, either.  He had been running a low grade fever, so I decided to cancel his 9 month checkup at the dr.'s office, where he was also going to receive the 6 month immunizations he is overdue for.  I couldn't reach the office, and since my appointment was at 9, I decided to take him in.  Thank God I did!  When I got to there, I realized that Levi did not wake up when I dressed him, and I could not get him to wake up.  Dr. Jones had a very difficult time waking him as well, but she finally brought him around.  They checked his pulse ox, which was fine, but his heart rate had dropped to 80.  She called the ambulance.  It was deja vu!  Literally, this is almost exactly what happened last time.  I was shook up, of course, but at least it wasn't complete shock like it had been in December.  Dr. Jones suspected that Levi had had a severe seizure and was wiped out from it.

We were sent to St. Anthony's to make sure he was stabilized.  I made it very clear that we needed to transfer to Cardinal Glennon as soon as possible.  The paramedic was great, he assured me he'd get us there as soon as possible.  The staff at St. Anthony's were great as well.  All the nurses were charmed by Levi, and his adorable curls.  Very soon we were screaming down the road to Cardinal Glennon, where we ended up sitting in er for many hours.  Thank goodness our family showed up to keep us company and the waiting wasn't so bad.  Levi had been awake and stable for quite a while by that point, so they ran some tests and we took turns cuddling him.  We learned that the CT scan of his head (they always do a shunt series when we show up in er, no matter why we are there) was improved from the last scan months ago. Yay!  The shunt adjustment back in June really made a difference!  Our favorite neurologist, Dr. Chrusciel, came to see us, and she said they believe his meds are to blame for the lethargy.  She said if Banzel was going to work, it would have already, and in fact she thinks it has made the seizures worse.  So we are weaning that off beginning today.  His phenobarbital levels are a bit high, so we are taking him from 9mls once a day down to 8.  She then mentioned that we had a couple options to explore.  The first is the ketogenic diet.  Oh, I dreaded the day that would be brought up!!!  It's a crazy diet where Levi would eat only certain formula, at certain times of the day, in certain amounts.  If he's hungry, he can't eat until it's time. If he's not hungry when he's supposed to eat, it must be forced down anyway. Any bit of spitting up and you have to replace what came out.  It's very strict! I've read two blogs of children who tried it, it didn't work, and took months. We agreed a while back that the diet would be a last resort for us. Many children receive seizure freedom from it, but many don't. So we chose the other option, Lamictal.  It is also a very slow process, and will take a couple months to reach the goal dose, because it must be increased very slowly.  We will start it hopefully today, and increase once every two weeks.

We had another scare as we were putting Levi into the car to go home. He had fallen asleep, and when we put him in the carseat, he again did not wake up or respond.  It took us a couple minutes of talking, patting, shaking to get him to open his eyes.  Once he did he was awake all the way home.  Thankfully we have not had any more episodes like that.

Please keep Levi in your prayers.  Please pray that Lamictal is the drug that's going to STOP these seizures!  There is also a serious side effect which involves a rash.  Please pray that Levi does not have this problem!  I can't tell you how tired I am of counting seizures and watching him suffer through so many every day.  He is currently having anywhere from 60-80 a day!  Thank you so much for your prayers!  

Thursday, September 8, 2011

What in the Heck is Banzel Doing, Anyway?

Levi has been on Banzel for three weeks now.  We reached the goal dose of one pill twice a day on Monday.  I don't know what to say about it.  Has it helped?  I don't know.  His partial (ticking) seizures are three to four times what they were when they first started, but I think Sabril is to blame for that.  In fact, the two types of seizures are about equal now.  He has anywhere from 20 to 40 a day of partial and infantile spasms each.  He did begin having longer, harder partial seizures, so we started him on clonazepam in the evening again, and that really helped.  The doctor said we could begin decreasing Banzel because it can cause an increase in some seizures, but we decided to wait a while and see what happens.  We are still holding Keppra at 1.5 mls twice a day for now.

As far as therapy goes, Levi is doing well.  He is really trying to hold his head up.  When he sleeps on his tummy he props his legs up on his knees in perfect crawling format, which is also perfect for weight bearing on his hips.  Too cute, and great for his hip development!  He is kicking his legs more and exploring with his feet, which is adorable, but he still doesn't do a lot with his arms and hands.  They are pretty tight, so we are doing exercises to loosen them, working on weight bearing on his hands, and soon he will have hand splints to keep his hands open while weight bearing.  He won't have to wear them all the time, though, thank God!  We are sick of restrictive devices!

Levi still needs lots of prayer.  If you could please pray specifically, as always, for a STOP to his seizures before they cause him any more damage we would greatly appreciate it.  Also, please pray for head control and more arm movement.  He is trying so very hard, and we can tell it's just so difficult for him!  I still believe it is because of the sedating effect of all the meds he's on, but regardless, he needs to be able to hold his head up so he can sit up, crawl, walk, run, skip, and play like all the other little boys and girls!  Thank you so much for your prayer!  We are lifting you up as well!

Thursday, September 1, 2011

Seizures, Seizures, GO AWAY!

Well, Levi is still having seizures.The infantile spasms are much reduced from what they used to be, thank God, and the partial, or focal, seizures have increased, which I believe was due to Sabril.  I'm afraid I may have to raise the dose on Keppra again.  We have seen so much improvement in Levi's movement and holding his head that I'm really reluctant to do that, but I may need to.  I think I"ll still wait a day or two to see what happens.  Tuesday we increased Banzel to one pill in the evening (he was on 1/2 pill twice a day) and we will go up again next week so that he will be on 1 pill twice a day.  Currently that is our goal dose.  I don't know what the max limit is for this med.  Since we started Banzel the seizures are down a bit, especially in the morning, and I don't really notice any side effects, thank God!  After the nightmare of Sabril I was nervous to try something else.  I read a blog of another little girl who battled infantile spasm seizures for two years, trying med after med that didn't work, and Banzel was the one that finally took her seizures completely away.  It's very encouraging, especially since her mom didn't notice a change until they reached the right dose and then BAM they were gone!  Oh, Lord, PLEASE let that happen for Levi!!  I would really love to begin decreasing Keppra again and get rid of it.  Who knows what this little guy will be capable of sans that super sedating drug!  The plan is for Banzel to take away the seizures, then we will begin to wean off the other meds one by one, until he is just on Banzel.  This could potentially be accomplished by Christmas.  What a lovely gift that would be!  A seizure-free, alert and happy baby!  If you could please pray specifically for these things we would very much appreciate it!  And we are praying special blessings on all of you as well!

I can't believe it's September 1st.  I love Fall, it's my favorite season, and I'm really looking forward to going for walks with Levi, crunching around in leaves, watching the gorgeous colors of the trees, and smelling the crisp Fall air.  Hopefully we can fit a camping trip in, too.

Seizure Diary:

Tuesday: Spasms - 42 in 27 episodes; Partial - 21

Wednesday: Spasms - 29 in 21 episodes; Partial - 20

Thursday: Spasms - 40 in 30 episodes; Partial - 30