Friday, July 27, 2012

Two Week Update

I talked to Levi's neurologist today and since there have been no obvious seizures we will begin giving him lower doses of the steroids starting tomorrow!  I'm very excited about this for several reasons.  First, I hate pumping chemicals into my children.  Second, hopefully his night time raging will come to an end and we will ALL sleep better.  But there is one more little benefit that will come from this.... by "little" benefit I mean hopefully he'll get little again!  I'm pretty sure I've already shared that the steroids make him absolutely ravenous.  After he's finished an adult-sized meal, he still wants more!!  So, to say the least, he's gained a little weight.  Most of it is water weight from the steroids, but the kid is HUGE.  His belly is so big that his belly button is COMPLETELY out.  COMPLETELY.  It's so big that Jeremiah was actually worried something was wrong with him.  His face has chubbed up so much that he can't open his mouth as wide as normal.  His lips are swelling too and are almost constantly pursed  because everything is so swollen.   I'm pretty sure he's gained three to five pounds in the two weeks that he's been on the juice.  So, the hope is that he will start to lose some of that water weight as we reduce his medication.

The scary part of it is that he could start having seizures again once we lower the dosage and we'd have to raise it back up.  So, please be praying for no seizures!!

We have our follow up appointment next Friday and he'll have to have another EEG.  So, I'm going to buzz his head.  I'm not a fan of the buzzhead look on little guys, but it will make it easier on him in the long run so that's what we're going to do.  The appointment should only take one day, but if he keeps having the night terrors (which could be a side-effect of the steroids or signs of seizures) after we lower the steroid dose, they might want to keep him overnight.  But, even then it would probably be just one night so I can't complain about that!

Well, there you go!  That's the news!

Here are Levi's before and after pictures.  Enjoy the chubbiness!





Wednesday, July 25, 2012

Some creative title about how life is going with Levi

This one will not be long.  I'm tired.  Tired and Emotional.  Tired because Levi has been up screaming throughout the night for the past three nights.  We're pretty sure it's the steroids.  I got two hours of very interrupted sleep last night and then another two hours split up and both equally interrupted this morning.  The night before wasn't as bad, but two nights ago was pretty rough.  I called and left a message for the doctor this morning and haven't heard back yet.  Hopefully we can give him melatonin or something.  I don't know how long I can do this without any sleep.  So, I'm tired.  Emotional because Levi has been  up screaming throughout the night for the past three nights (wait, I already said that).  I'm supposed to be going to a fun and free breakfast for artistic people in Minneapolis tomorrow morning.  I've been looking forward to it for weeks, but right now I'm so tired that I don't even want to go.  That makes me kind of emotional too.

So, there you go.  I don't want this to be a place where I can just vent so I hope I haven't been a downer to anybody.  We're still trusting God and Levi is doing well overall.  He's just not sleeping.  Even after getting such little sleep, himself, he still barely napped at all today.  It's currently an hour past his bedtime and he is up and rearing to go.  So, it's just where we are in the process of it all.  I wouldn't mind this part coming to an end very soon.  In the mean time, God is faithful and I know I can find my rest in Him.  I just have to actually do it.


Saturday, July 21, 2012

One Week

Levi has had one week free of seizures!  This is a good thing.  I think his meds were getting to him today so he wasn't quite himself again.  With all the days when he's perfectly normal, you think I'd be okay with a day or two like today but I'm not.  It just messes with me to see my baby so drugged and emotional.

The good news is that if he stays seizure free for another week, we'll begin to decrease the dose of steroids.  The scary things is that with this reduction the seizures could return.  We are hoping and praying that they never return, but as the doctors begin to regulate the medication, they could come back.  So, he could have to stay on the steroids for quite awhile (or forever). Our hope, though, is that we can completely eliminate all medication within the next couple of months.  There is a chance that this treatment could cure his seizures completely (a small chance, but a chance!).  So that's what we're praying for.  Feel free to join us!  :)

Lastly, Levi started yet another medication today.  Steroids lower our immune systems.  I knew this.  I've known several people who have stayed away from large groups of people and lived very cautiously because they were on steroids.  Apparently, Levi is on such a high dose of steroids, though, that his immune system is SO compromised that he now needs to take preventative antibiotics to help keep him from getting sick.  They're concerned that if he were to get sick, it would be severe.  So, he started his preventative antibiotics today.  Please also be praying that he stays healthy through all of this.  Most of you know how I hate pumping chemicals into my babies' bodies.  It's just not right!

So there you go, things are still looking up, but I am nervous that reducing the steroids won't work.  Thank you again for all of the prayers!

Wednesday, July 18, 2012

Meds, Moods, and Foods

Levi has been seizure free since Saturday!!!  I hope this means his steroid treatments are helping and maybe we can start reducing the dosage soon.  The steroids have been rough on him.  He's pretty up and down emotionally during the day and hasn't been sleeping well at night.  But, I've been watching the clock and have noticed a consistency between his moods and his meds which makes me feel better to know that it's not some permanent change in his personality from the seizures. 

Aside from being a bit moody, he's also HUNGRY all the time.  And I mean HUNGRY!!  He just can't seem to get enough food. Our amazing doctor friend said not to let him eat too much and to try to give him only healthy snacks since he'll be wanting to snack all the time.  I haven't been grocery shopping since a week before we were in the hospital so I don't have much to feed him.  But I'm going grocery shopping today and am hoping to find healthy, all-natural, very low-calorie snacks.  I do plan on steaming some veggies, but if you have any other ideas please leave me a comment!  I'm wracking my brain trying to think of stuff and just don't know what to do.   It's so hard to deny your child food when he's so obviously hungry and I don't think I'm doing a very good job at it.  Not that I think we're supposed to completely deny him food when he's hungry, but we do need to keep it very healthy and only until he's just satisfied.

Overall, I think we're adjusting as well as we can to all the medication.  His mood is getting a bit more consistent as time goes on and we'll figure out the food thing.  Most importantly, of course, is that he hasn't had any more seizures!!  We have a follow-up appointment on August 3 and possibly a short phone consultation before that to adjust the steroids (which they will need to be adjusted if he continues on this streak of no episodes!)  So, please continue to pray for no more seizures.  Apparently, there's a chance that if this treatment works, he can go off the meds and continue to be seizure free forever!  I do believe it's only a 30% chance, but I have hope for it!

Monday, July 16, 2012

Moving forward

As far as we know, Levi hasn't had any seizures since Saturday.  There have been a couple of jerks while he was sleeping, but it seemed more like the usual sleeping jerks than seizures and they didn't repeat in clusters like the normal ones do.  So, hopefully that means the steroids are working.  With that, though, the steroids are definitely affecting him.  He was either cranky, crying, or screaming from the time that he woke up till 6:00pm yesterday.  He did give us 3 or 4, 5-10 minute breaks.  But, overall, he was a mess.  He just wasn't himself and that was hard to deal with.  I feel like I can handle 17 different medications and shots and probes and whatever crazy tests or treatment we have to face, but when my son is not my son it kills me inside.  So, the past couple of days have been a bit more difficult emotionally.  It's all starting to soak in.  I'm really realizing that life is going to be different for awhile and I'm not quite okay with that yet.  But, I know I will be.  Why?  Because Jesus is holding me!  Here is a scripture he's speaking through today.  I'm saying it aloud as I type each word.

"My sheep hear my voice, and I know them, and they follow me; and I give eternal life to them, and they will never perish; and no one will snatch them out of my hand.  My Father who has given them to me is greater than all; and one is able to snatch them out of the Father's hand."  -John 10:27-29

Here's another scripture that I am speaking over Levi's life.

"For in Him all the fullness of Deity dwells in bodily form, and in Him you have been made complete, and He is the head over all rule and authority."  -Colossians 2:9-10

Lord, PLEASE, let Levi be made complete through You!

Sunday, July 15, 2012

Home Alone 2

That' right.  I planned the title for this post before I titled the last one.  The good thing is that since there were like five of those movies, I can write like three more posts before I have to come up with a creative title again.  The bad thing is my sense of humor.  But, I digress.

So, Levi is doing well.  He had four seizure on Friday, two yesterday, and none, so far, today.  He's doing pretty well taking his medication, which I can tell is starting to affect him.  Apparently steroids make you pee your entire body weight by the end of each day (this may be a slight stretch...) so Levi has had the most full diapers EVER.  Not a big issue to deal with so I'm not complaining.  The steroids are also having the usual side effects - irritability, aggressive behavior, hyper-activity.  As many of you will know, Levi is a very active child.  If I turn my back on him for more than three seconds he has either climbed up on top of the highest piece of furniture in the room or he has put some sort of choke hazard in his mouth.  In between climbing and eating everything, he runs.  There is no walking with him, only running and climbing.  That's pretty much a normal day with Levi.  So, now please imagine that sweet normal Levi with a little (or large) steroid boost.  Levi on steroids is even more active, but with a pinch of aggressive and a dollop of cranky.  But, he's still my sweet boy and I wouldn't have him any other way.

In other news, we broke down and bought wrist watches yesterday.  If Levi does have a seizure we have to be able to time it accurately and our phones just weren't cutting it.  It actually feels really weird to wear a watch again, but I'm getting used to it.  Of course our watch purchase is completely irrelevant to how Levi is doing, so feel free to skip this part.  Oops.  Too late.  I guess I should have said that before hand instead of after.  Sorry.

So, overall we're all doing well.  We're tired.  I'm still nervous about being able to properly parent a child who has seizures.  But, I have a firm belief that God gives kids the parents that they need to have and parents the kids that they need to have.  So, God must think we can do it.  So, we will.  With Him, we will!

Friday, July 13, 2012

Home Alone

They sent us home today.  Like I mentioned before, I don't know that I'm ready to be home, but here we are.  We're getting on with life.  It will be a whole new life, for awhile at least.  For instance, Levi had four seizures today.  My job, as stay-at-home-mom is to make sure none of those seizures last more than five minutes and that he doesn't have more than two in an hour, otherwise I have to administer emergency medication and call his doctors.  So, I pretty much have to watch him every moment of the day until we've found a treatment that manages the seizures.  And that is the next step - finding a successful treatment.

And the current treatment plan is:

We were sent home with five prescriptions!  We have already begun weaning him off of one, which will be finished tomorrow.  Another is the emergency medication that I mentioned previously, so we'll only use it if we absolutely have to.  But, that still leaves three that he has to take on a daily basis - the vitamin B6 - twice daily, prednisolone (a strong steroid) - 4 times/day, and Zantac once/day (because the steroid will upset his stomach).  So, they are hoping (WE are hoping) that the steroid will help to calm/stop the seizures.  We have a follow-up appointment in two weeks to determine whether the steroids are helping.  This will include another EEG (with all the wires connected to his head).  Depending on EEG results and whether the seizures have increased, stayed the same, or decreased they will either increase the steroid dosage, keep it the same, or begin to gradually decrease it.  We'll have another similar appointment 2 to 4 weeks after the initial follow-up appointment. The hope is that we can gradually taper Levi off of the steroids completely and stop the seizures altogether.  At the very least, though, we'd like to get them under control and potentially put him on a milder medication to manage them.

There will be more test results coming in a few weeks as well which could change the treatment plan if any of them come back revealing a specific cause for the seizures.

So, there you go.  This is the plan as I understand it. (Speaking of "as I understand it", I would like to throw a disclaimer out there.  All of the information/conclusions. in this and previous posts, from the doctors is "as I understand it".  Seizures are such a complicated condition that even the neurologists don't claim to completely understand them and then I'm expected to understand the neurologists as they try to explain something that they don't completely understand.  With that, I'm sure I have plenty of misconstrued information about seizures, etc...., but it's what I understand is going on at this point.)

Thanks again for the calls and texts and prayers!!  Even just seeing the huge numbers of people reading this everyday is amazing and so encouraging!  We have a HUGE support group.  Thank you!

Thursday, July 12, 2012


Neurologists came in this morning with results of the MRI.  There was some hyper-intensity in his brain on both sides, which just shows some immaturity in the brain, but they weren't too concerned about it and didn't feel that is was connected to the seizures.  They said his brain should continue to develop normally, but that it just seems like some of the physical development is just happening a little slow.  But, it will catch up.

With that, they weren't able to be conclusive regarding the cause of the seizures.  Levi did have the lumbar puncture yesterday to test for multiple issues, many of them being malabsorption problems.  In other words, they're checking to see if there are certain substances that his body is not absorbing correctly.  For instance, the vitamin B6 issue would be a malabsorption issue.  We'll have some results within a couple of days, but most of them will take as much as two to three weeks.  If it is not a malabsorption issue, they said it is likely to be a genetic problem.

They have prescribe steroids for Levi and want to keep him here for a couple of days to observe him while he gets started.  He will take these steroids for 4-6 weeks and then we'll have a follow up appointment with another EEG (NO FUN!!), which means we could be here for another couple of days 4-6 weeks from now.  Depending on results at that time, they may change his medication.  The doctor also gave me SOME hope that this is something he could grow out of.  Of course, this is after I asked.  :)

All of that said, I have to share this:  Since we've been here, Levi has actually reached a few developmental mile stones!!  Hearing this, the neurologist said that most children with his condition would be doing the opposite which made him fairly confident that Levi will be just fine developmentally!!  This just goes to prove that God is way bigger than our physical situations!

 A couple of pics of Levi this morning.  Too busy playing and climbing to take a decent picture.

Wednesday, July 11, 2012

A Little Update

 Daddy and Levi playing with his new toy from Nana.
(pre-turban removal)

Today they did a lumbar puncture and an MRI to try to determine the cause of the seizures and we haven't heard from them yet other than that they did see some abnormalities in his brain function.  We should find out, tomorrow, what they feel is causing the seizures and how they would like to treat them.  Of course, this could be a difficult prognosis so I'm hoping for the good news but preparing, mentally, for bad news.

Depending on how they want to manage the seizures, I suppose it is possible that we could go home tomorrow????  But, it's hard to tell.  I don't know that I'm ready to go home, anyway.  I just don't feel qualified to care for a toddler with seizures.  I guess that's my latest struggle, but this too shall pass.  It has to.  I have to move on some time, right? And, God is in charge!

Good News!!

Good News!!  The head neurologist just paid us a visit and said that Levi's condition is pretty positive considering the circumstances!  After further observation, they are finding that the background activity in his brain during non-seizure moments is not typical for his condition.  From what I understood, in most cases of infantile spasms, there is irregular brain activity even during non-seizure times, but for Levi the more dangerous irregular activity only occurs during the seizure.  This is a sign that the condition shouldn't cause any developmental delays.  They said he is still having the spasms, but they think that since he presented symptoms so much later than most (it usually presents as early as 2 months) that the effects on his development will probably be minimal.  Nothing is conclusive of course, but he was more on the positive side.  Levi does have some slowing in the left side of his brain and they will be trying to determine the cause of this with the tests today - MRI, lumbar puncture and blood work - at around 1:30.

The other good news is that they have finally removed the EEG probes!!!  My baby is free to wonder around again without constraint! 

Please continue to be praying about the results of today's testing since the cause of the seizures are unknown and could still require serious treatment.  BUT, overall, the neurologist's outlook is a bit more positive than it was yesterday afternoon!!  Thank you JESUS!!

We'll keep you posted!

Here are a few more pics of Levi with his "hat", without his "hat", and with the probes ALL GONE!!

Levi with his baby who also had an EEG.  Too sweet not to share

After the gauze was removed, but still connected to the probes.

ALL DONE!!!  No more probes!  No more wires to trip over!  We went to the playroom after this!

Tuesday, July 10, 2012


I'm pretty sure I'm stuck right in the middle of one of the most life-changing weeks of my life.  It's right up there with getting married and having babies only on the other side of the spectrum.  I'm not really that excited about the changes that are taking place.  But, since this week has such potential to completely alter how I live my life I want to document what's happening.  As rough as this week has been (so far), I want to remember it and I know alot of people who probably have alot of questions about what's happening so here goes....

It all started just over a month ago.  I was laying, face down, on the chiropractors table while Levi sat in the stroller playing with a toy.  At one point, my chiropractor stopped and asked me to get up and look at my son.  So, I did.  She was concerned because he had started jerking forward, as though he were falling asleep with his eyes open, every twenty to thirty seconds.  I only saw a couple of small jerks and Levi responded well to me when I approached him so I attributed it to a sleepy baby.  Levi had his eighteen month appointment just a couple of weeks later so, with some tips from my mom (a nurse), I watched for any other seizure-type symptoms.

I did see a couple of minor things that were concerning so I made sure to mention it to his doctor who said to keep watching and call if it got worse.  One week and one day later - this past Saturday - Levi had another episode.  A big one.  At about 10:15am, Levi started trembling and then repeating the jerking motion that had occurred at the chiropractor.  One single (falling asleep with his eyes open-like) jerk every ten to fifteen seconds.  We grabbed the camera and taped the episode.  It lasted for about 3 minutes, but after it was over he was almost completely unresponsive and just slept for almost an hour.  Our dear doctor friend, Roger Crouse, told us if it happened again to go to the E.R., but otherwise make an appointment with a neurologist.

It happened again.

That evening just before 6:00pm, he did the same thing.  We briefly contemplated waiting for an appointment, but THANK GOD we didn't.  Jeremiah, my mom and I took him in to the E.R. where he had yet another episode.  Because he had no known history of seizures, they felt we should stay over night, but gave us the option to go to Mayo Clinic hospital an hour and a half away in Rochester, MN.  They have a pediatric neurology team.  So, we packed up, made the drive to Mayo Clinic and after check-in and check-up's we finally made it to bed around 4:00am.

On Sunday we waited.  And waited.   And, yes, we waited some more.  The neurologists were wanting to see an episode and they just weren't.  Sometime in the mid-afternoon, the pediatrician came in and said since Levi hadn't had any more episodes, they had decided to release him and schedule some follow-up appointments for later in the week.  I was so frustrated because I KNEW something wasn't right, but they weren't convinced.  As the pediatrician left the room I said a little prayer, "God, if we need to be here, please let them see what they need to see!"  I hadn't even completely finished the thought when Levi started another episode.  This episode was a smaller one, but Levi was very disoriented afterward. The doctor hadn't been out for even a minute.  We were able to get a nurse who witnessed the end of it.

We stayed.

Well, I stayed.  Jeremiah has a huge project due on Thursday so he had to go home so he could go to work.  Plus, we wanted one of us to be with Toby since we'd already been gone for an entire day.

The neurology team scheduled an EEG for Monday morning.  EEG's are a way of measuring a person's brainwaves in hopes of catching any unusual activity.  EEG's can last anywhere from one hour to five days, and are a NIGHTMARE for an eighteen month old.  They had to literally super glue thirty-two small, sequin-sized probes to his head.  The process went something like this:  Measure head, make thirty-two marks on head, put super glue and probe on head, put a little straw type thing that blows air on the probe to dry the glue, repeat until all thirty-two probes are glued on, put a blunt, needle sized object inside of each probe and scrape skin off of head to increase electrical connectivity, fill each probe with some weird electrical gel formula, fill each probe with lotion, wrap head in gauze, cover in another layer of a gauze-like stocking cap, add lots of tape and hope it works.  To say the least, Levi hated it.

Mom had come over that morning so she had to help us hold my baby down for almost one hour of torture.  He screamed and thrashed the entire time until it threw him into another episode.  Yes!  The probes were on! He had an episode! They got it recorded!!  Kind of.  But, it wasn't a good enough recording since they were still wrapping his head when it happened which distorted the reading, Sooooooo...... we waited some more.  We did get to come back to our room, but Levi can't leave until the observation is over because he's hardwired to the wall and they're video taping his every move.  The neurologists said we had to wait until he had another episode.

In the mean time, Monday morning's episode left Levi even more disoriented than before.  His responses were very minimal and very slow while he was awake and then he slept for almost four hours afterward.  He was fine after he awoke.  But, we thought that maybe his slowness and disorientation would leave answers on the EEG for the doctors.  Nope.  So, we stayed another night, waiting for another episode; hoping it would happen; hoping it wouldn't happen.  Ever again. 

It happened.  He had another episode yesterday morning and the neurology team was able to get a good reading from it.  Levi's response to this episode was probably the hardest thing I've had to deal with so far.  He had a few minutes of very slow, disconnected mental response.  And then, at one point, he was looking at me and instantly fell asleep.  He slept for almost five hours.  From 12:45 until some time between 5:00 and 6:00.  But, it was a DEEP, HARD sleep.  He wouldn't wake up for anything.  He didn't even stir.  At all.  I'd been doing pretty well until this point, but I couldn't help but worry he would never wake up.  I've never seen anybody sleep so hard.

It was during this time that the neurologist in charge of our case came in with the diagnosis -  Infantile spasms.  Have you ever wished your kid had epilepsy?  I have.  Infantile spasms were the last thing I wanted to hear.  Epilepsy is usually pretty easily managed, kids frequently grow out of it, and the seizures don't tend to be dangerous.  Infantile spasms can be more difficult to manage, kids can grow out of them (they didn't want us to get our hopes up, though), but the seizures can be dangerous.  Most children diagnosed with infantile spasms are developmentally delayed because of their seizures.  The good news is that we caught it early so there's a chance that if we are able to manage Levi's seizures he may not experience any developmental issues, but again, the neurologist didn't want to give us false hope. (Something to be praying for!) The other good news is that sometimes infantile spasms can be caused simply by a deficiency of vitamin B6 so Levi was immediately treated with a high dose of vitamin B6.  If this is the cause for his seizures he may just need to have his B6 monitored and he could never have any more issues ever again.  It could start working immediately, but it might also take a few days. PLEASE PLEASE PLEASE, I can't say it enough, PLEASE pray that this is the case.  If a vitamin deficiency isn't the cause, the treatment and management can become much more complicated.  Depending on the cause, we'd have three options: 1. One medication that may or may not do a good job managing the seizures 2. another medication that frequently causes peripheral blindness that tends to spread 3. Brain surgery.

So, you see why I'm pleading with you to pray for a vitamin deficiency!  Levi will have an MRI today (Wednesday) as well as a lumbar puncture, urine test, and blood tests so doctors can try to find the cause of these seizures.  Once they find the cause it could take another day or two to get treatment managed.  I have a feeling that whatever treatment is necessary, even brain surgery, they'll want to do it as soon as possible as his seizures are taking more out of him every time.  But, we just don't know what will happen.  I could be wrong. 

So, now you know the details.  As I read over them I'm amazed at the great measure of peace I have.  I do have my moments, but I'm able to have a short cry and move on.  God gave me Levi.  God has a plan for his life and I know that He will carry it out.  I'm not freaking out.  I'm not angry.  I'm not scared.  In fact, at my worst moments, when I start to cry, I'm overwhelmed with thankfulness.  I know that God's in charge and I'm not (thanks Wendell Nickerson!!).  He's got it covered, whatever happens, and I'm so thankful for that.  I'm thankful for Levi, whether he's Levi with seizures or Levi without seizures (preferably without:).  I'm thankful that I have not been able to keep up with the texts and calls of everyone who is praying for us.  I'm thankful that no matter what happens, no matter how hard this next season of life could be God is still God - Comforter, Prince of Peace, Immanuel, Father, friend.  He really is all I need.

Thank you everyone who is praying.  Thanks for the encouraging calls, texts and emails.  Thank you Lord that you WILL have your way and that you are holding us in your hands.

I'll keep you posted....

Here are a couple of songs that have carried me through: