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!  

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!

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

Nice Weekend

We had a super busy but fun weekend.  Sunday morning we had the baby dedication at church.  I'll post the video on here later.  It was very nice, quite a few babies were dedicated.  Then we had a wonderful lunch with family and friends to celebrate, then on to a quarter auction to benefit ALS, and finally to our bowling league, where we learned we were in first place (yay!) and won all our games and maintained that status.  Today Levi and I walked in the park with Miranda.  It was a gorgeous morning!  I was able to get some stuff done while Levi took an amazing 4 hour nap, and we've had a pleasant evening.  The seizures haven't been too bad.  This morning he had very few, but this afternoon and evening he made up for it.  I still think we are on the right track with Banzel.  He is on half a pill twice a day, and we are due to increase to one pill in the evening tomorrow.  Next week he will increase to one pill twice a day, and that is our goal dose.  Please pray with us that Banzel completely takes away both types of seizures!  Thanks for all your prayers!  Hope your weekend was wonderful as well!

Seizure Diary:

Sunday: Spasms - 43 in 25 episodes; Partial - 31

Monday: Spasms - 33 in 20 episodes; Partial - 24

Less Seizures Today!

Today was another very good day!  Levi woke up this morning with bright eyes and smiles for everyone.  He's such a little darling in the morning.  It's so funny, when he wakes up he clicks his tongue.  It's really loud and too cute.  We had breakfast and did a little shopping.  He was too busy checking everything out to nap much, just a few catnaps here and there when his eyelids were too heavy to hold open.  So I expected an evening meltdown, which did come but wasn't too bad.

We set up his playpen and put him in it for the first time this morning.  He really seemed to like it!  I noticed halfway through the afternoon that his seizure count was pretty low, and he ended up with a low count for the whole day!  I'm ready to see those numbers keep dropping until they are GONE!

Tomorrow is the baby dedication at church.  He has a sweet little suit to wear that Moga bought him for Easter, but he was unable to wear because we were in the hospital.  I didn't think it would fit, but I tried it on and, although snug, he will be able to wear it!  I'll post pics of the handsome little guy.  Thank you for all your continued prayer that the seizures will go away!

Seizure Diary: Spasms - 32 in 19 episodes; Partial - 15

A Good Day!

Levi was such a good little guy today!  After breakfast (he really seems to like banana raspberry oatmeal) we went for a walk in the park.  He absolutely loves riding in the stroller and checking everything out for a few minutes before he falls asleep.  I put him into a more upright sitting position today, which he seemed to like, and he did pretty well holding himself in the center.  Our next stop was the grocery store.  He was quiet but very alert.  It's so wonderful to see his bright eyes taking everything in!  He seems to be seeing more than before as well.  His head control continues to get better!  We are definitely on the right track!

Seizure Diary: Spasms - 42 in 24 episodes; Partial - 34

Lots of Smiles

This morning we had a nice breakfast with Moga (my mom).  It was nice to get out of the house and just visit a little bit.  Levi was lounging in his bean bag when Moga came in, and he started moving his arms and legs.  I think he was excited to see her!  He's never done this before, so I was as excited as Levi!  He's been super smiley the last couple days.  He used to only smile when bounced and, strangely, sometimes with a spasm.  But now he smiles a lot.  I do believe it's the decrease in Keppra.  I spoke with the neurologist today because Levi has had a lot of seizures the last couple days, and I assume it's the fact that we are decreasing Keppra and still on a very low dose of Banzel, but I wanted her to be aware of it.  She said we could return to 2 mls of Keppra, or wait and see how he does when he gets to a higher dose of Banzel.  We decided to wait.  We've seen so much progress in the last week and a half since the first decrease that we don't want to risk regression.  Then today, praise the Lord, he didn't have quite as many seizures!  One thing I find interesting is that the spasms and partial (or focal) seizures are almost equal.  The spasms used to highly outnumber the partial.  I don't know if it means anything, but I'm sure glad to see the spasms going down again!  Please keep the prayers coming!

Seizure Diary:

Wednesday: Spasms - 50 in 32 episodes; Partial - 47

Thursday: Spasms - 34 in 26 episodes; Partial - 30

Making Progress

Today we decreased Keppra again.  We were at 2 mls twice a day and now are down to 1.5 mls twice a day.  Last week we saw some better head control, a bit more arm movement, and he was more alert.  This morning Levi had a huge meltdown when I put him in the stander, and although I took him out after a few minutes, he proceeded to cry for almost an hour.  I'm sure his teeth were bothering him.  He was biting down hard, and once the Tylenol kicked in he finally fell asleep.  I was pretty sure he wouldn't do anything in therapy, but I was wrong!  He woke up when Mary came in and cooperated with her very well.  She gave him a piece of gold crinkly paper to play with.  He held it with his left hand and actually brought his right hand over to it and felt it!  Not just once, but a few times.  I was so amazed I almost had a meltdown of my own.  I'm really looking forward to more progress as we continue to come down off Keppra.  Unfortunately, the partial seizures seem to be on the rise, but hopefully once we get to a good dosage of Banzel they will go away!  He is on half a pill once a day right now, and tomorrow we will go up to twice a day.  I'm praying we will begin to notice less seizure activity!

Seizure Diary:

Saturday: Spasms - 38 in 29 episodes; Ticks - 1; Stiffs - 6; Both - 26

Sunday: Spasms - 41 in 22 episodes; Ticks - 5; Stiffs - 4; Both - 22

Monday: Spasms - 48 in 22 episodes; Ticks - 2; Stiffs - 0; Both - 41

Tuesday: Spasms - 43 in 24 episodes; Partial - 26

Levi's First Haircut

I know, I know, no one wanted those curls cut off, but he was becoming a cross between Buckwheat and Rapunzel, so it just had to be done.  Moga came over and tried to cut them off, but they decided to stick around!  So for all of you who begged me not to cut them, you will be glad to know that, although much shorter, the curls remain intact.  He was amazingly good the whole time, and let Moga snip away as much as she wanted.  I'm loving his new do, it's soo adorable!

He's had a pretty good day.  He slept in his crib for the first time in almost three months!  Which means, of course, that I was able to sleep in my lovely memory foam bed for the first time in almost three months! lol  I definitely felt better for it this morning, and he must have, too.  He woke up with smiles and let out this darling "gummy" grin.  What a way to start the day!  He had a couple cranky episodes, I'm sure due to his teeth, and was much more awake and alert.  I love seeing that sparkle in his eye!  He's standing very well, too.  Any time we pick him up (when he's not in his brace) he sticks those legs out and wants to stand on them.  He plants his feet flat on the floor, not tippy-toed like a lot of babies, and straightens out his legs.  It's so adorable, and so on target developmentally that I'm amazed.  This kid is awesome!  His head control is getting better as well.

We are looking forward to a fun weekend.  Hope you all have the same!

Seizure Diary: Spasms - 23 in 11 episodes; Ticks - 0; Stiffs - 0; Both - 23

Before Pics

First Haircut!  So Handsome!

First Dose of Banzel (Rufinamide)

We had a hold up with the insurance, so it took us a few days to get the Banzel, but we picked it up and gave him the first dose late this afternoon.  It's in pill form, so we crushed it up and put it on top of his baby food.  He's used to taking Topamax like that, so it went off without a hitch!  He turned cranky about half an hour after he had it, which was quite a bit earlier than his normal crying spells.  The first day on Sabril he was extra clingy.  I think it's just the first day on a new drug makes him feel different and he doesn't understand.  Hopefully tomorrow his crankiness will be gone!  Please pray with us that this new med will STOP both types of seizures quickly!  The least amount of meds he's on the better.

We had a fun day spent in Edwardsville today.  We had lunch with a friend of Patrick's, and this evening went to a concert at the amphitheater on the riverfront, featuring a Journey tribute band and a Bon Jovi tribute band.  They were both pretty good.  I liked the Journey band the best.  It was warm, but we had a cool breeze, and it was definitely nice to relax outside.  Levi liked most of the music and of course he loves to be outside!  He's snoozing in Daddy's arms now, all fresh, clean and ready for bed :)

His seizures have still been down today.  They have been consistently low since last Monday.  The Banzel doesn't have too far to go to take them completely away, so hopefully that will happen very soon, on a low dose of medicine.  I will keep everyone posted.  Have a wonderful weekend!

Seizure Diary:

Tuesday: Spasms - 43 in 14 episodes; Ticks - 0; Stiffs - 1; Both - 25\

Wednesday: Spasms - 34 in 12 episodes; Ticks - 1; Stiffs - 0; Both - 23

Thursday: Spasms - 24 in 12 episodes; Ticks - 0; Stiffs - 0; Both - 24

Looking cute before church last week

Levi and Mom at the concert