Another ER Visit, Ketogenic Diet Decision

Thursday night for about an hour and a half during dinner time, Levi was having back to back seizures.  We were just about to either call the neurologist or take him to the ER when they stopped.  He was really tired afterwards, but acting normal.  At 4:00 the next morning he woke me up with more nonstop seizing.  We called Cardinal Glennon and then took him in to the ER.  We figured they would give him a rescue med, which he has never before needed.  By the time we got there the seizures were occurring normally again.  We spoke to a new neurologist about possibly starting Depakote in the future, and received a prescription for diazepam, a seizure rescue med, in case he had that problem again.  By this point we were definitely certain that we wanted to start the Ketogenic diet -- the sooner the better!  One of the neurology nurses came to visit us while we were still in the ER to speak with us about the diet and give us a questionnaire to fill out regarding Levi's current eating habits and what types of food he likes.  We let her know we have made the decision to go ahead with the diet, and filled the paperwork out before we went home.

At this point, this is where I stand.  I'm tired of trying medications that work so well for some kids but either do nothing or cause more seizures for Levi.  I'm tired of watching him go through seizure after seizure and be able to do nothing but try to comfort him.  I'm tired of counting seizures and dreaming of the day when they will STOP.

It's my belief that drug therapy has been tried, and has failed, so it's time to go on to other methods of epilepsy control.  The Ketogenic diet is our first choice.  It's a high fat, low carb diet that forces the body to burn fat instead of sugars. No one really know why this works, but it does, in about 2/3 of the children who try it.  You can ready more about it at www.charliefoundation.org or www.epilepsy.com.  We are looking to begin the diet in mid may.  It requires a hospital stay of at least 3 days to get him acclimated and bring his body into a state of ketosis.  In the meantime I would like to wean Clobazam (Onfi) all the way off and not begin any new meds.  We have a neurology appointment on the 18th of this month and I'll see what they think of my plan. LOL

On to brighter things, even though Levi has been having many extra seizures, and sometimes strange jerking movements, he has been very alert and happy!  He smiles a lot, and holds his head better than he ever has.  When he sleeps he has been curling into a little ball, it's so cute!  He wants to stand a lot, and his entire body seems so much stronger!  I stand him on the floor between my legs while I'm sitting on the couch and only have to watch his head a little.  It's truly amazing to watch him begin to wake up!  Hopefully this diet will be the miracle we need.  It really is the only thing out there that has actually cured epilepsy for some people.  Prayers are always very much appreciated!  

Dietitian Appt, ER Visit, and More...

This last week has been a busy one for us!  My youngest sister Casey just moved back to the area (YAY!) and we had three of her six children last weekend while they moved.  It was awesome!  We had Faith, 7; Allie, 6; and Titus (aka Cheetoh), 1.  We went for walks, played Zumba on the Wii, and had a great time.  It was a lot of activity for Levi, but he did seem to enjoy himself.  Titus kept talking to him.  I think it's so good for him to be around a baby close to his own age.  He can learn so much from Titus!

The first part of the week Levi was floppy and listless.  On Tuesday he ran a fever and had a strange wheezy, labored breathing pattern, so off we went to the Cardinal Glennon ER.  We left the house around 8:30 and didn't get home until 4am!  As usual, they did a CT scan and x-rays to be sure that his shunt was working well, which it is, thank God!  He had an IV for fluids, and we were sent home.  I was concerned that the labored breathing was due to the increase in Clobazam last week, but fortunately that was not the case, and it was only a virus.

Thursday we had our first appointment with the dietitian in the hopes that she could give us new ideas for increasing his caloric intake.  He's growing taller just fine, and he looks more pudgy, but for some reason he is stuck at 17 pounds.  So the dietitian, Barbara, switched his formula to Nutren Jr. or Pediasure Peptide, both vanilla flavored.  These each have a higher calorie content than Nutramigen.  She sent us home with samples and told us to call next week and let her know which works the best.  We started with Nutren Jr., which he took readily at first, but now not so much.  It's just like when we tried to switch him to milk, and he ate less and less until we gave in and put him back on formula.  It has been challenging, to say the least.  Last night he flat refused to drink any more after he downed the bottle with meds (less than an ounce), and wouldn't take pedialyte either.  So I spent an hour dropping pedialyte into his mouth with a straw until it was gone.  Boy was he mad!!!  I wasn't too thrilled, either. lol

Barbara wants Levi to eat more table foods, so we will be blending up our meals for him.  I switched him from Gerber yogurt to Yoplait, which he is thoroughly enjoying.  He is eating his solids very well, thank God!  We just have to get him past this hump with the new formula, and all will be well.

As far as seizures go, we have seen some great improvements!  He is down to about 40 a day now, and they seem to come in groups.  Thursday he was actually seizure free for about 5 hours, and yesterday for about 3 hours!  I will be contacting the neurologists on Monday to see if we can/should go up on Clobazam again.  We have an appointment with them on the 18th, but this is not something I want to put off!  Hopefully we have room in increase and he will become seizure free for good!!!

He's been much more awake lately, too!  The fast movement/shaking of his eyes is greatly improved as well.  He seems able to focus much more, and has been so happy!  His toothy grins are just priceless!

That about brings us up to speed.  We look forward to having a wonderful Easter tomorrow, made that much sweeter because last year we spent Easter in the hospital.  We hope you all have a Happy Easter!  Don't forget to thank Jesus for giving his own life for each one of us!!

Another Clobazam Increase/Positive Improvements!

Yesterday was another awesome day for Levi!  We began by driving to Hanger Prostetics and Orthotics so he could be fitted for hand splints.  He will have a combo splint, one part for functional use, then an add on part for keeping his hands open while sleeping.  We had a super experience at Hanger!  They were so friendly, and the person who helped us, Brian, was extremely knowledgeable, friendly, and terrific with Levi.

When we arrived at Hanger and I opened the car door, Levi gave me a huge toothy grin (he smiles with seizures a lot, but this was definitely a purposeful grin without a seizure!), and again when we were inside and I swung his stroller around to face me.  His vision seemed much clearer at times.  He made eye contact with Moga several times, for a longer period than normal.  Levi was so happy.  It's nice to see him content and trying to interact with us, instead of just laying around like a zombie.  Is this due to the lower dose of Phenobarbital?  I would think so.  When we began the wean he was at 8 mls a day, and we are now down to 4 mls!

The seizures were severely less yesterday as well.  Before the sudden spike in seizures over a week ago, he used to have in the area of 30-50 seizures a day.  Since then he's been hitting 70-80 plus a day.  Yesterday he had around 40!  Last night at supper we increased his Clobazam to 15 mg.  It will take a few days to see results, but we are praying that this works and we do not have to go forward with the ketogenic diet!  We thank God for blessing us with these very positive improvements!!

Nice Day!

We are still seeing about the same number of seizures today, but he has had a very good day!  This morning he had therapy with Diane, for which he was super cooperative. Levi slept for most of the time I was bowling (don't ask how THAT went, it was not good LOL).  He woke up a little after noon with smiles, which is always nice to see.  He hung out in his lambie chair while I took some pics to post on the Etsy store.  He is never hungry when he first wakes up, so I waited half an hour or so before trying his bottle.  He wasn't too enthusiastic about it, but did finish half of it, about 4 ounces.  During the remainder of the afternoon he laid under the play gym and looked at toys, lounged on the floor and watched the light box, and stood for a good 20 minutes in his "mustang" (as Patrick likes to call it) gait trainer.  He was full of smiles all day, and even threw in some huge grins when Moga talked to him, and when I bounced him.  After supper Patrick and I took him for a stroll around the neighborhood.  Now he is cuddling on Daddy's lap, and will have his supper soon.  It was a wonderful day!

Still About the Same...

We increased Clobazam to 12.5 on Friday evening.  I expected Levi to be super tired after, but to my delighted surprise he remained pretty alert for a couple days.  He's fighting sleep like never before, and I really think his evening meltdowns are more related to extreme sleepiness than teething, although that is definitely also a problem.  The seizures continue to be very high.  He had 70 spasms and 18 focal seizures yesterday.  He is super tired today, from the seizures, the meds, or most likely a combination of them both.  He's content to lay in my arms and try to stay awake.  That's about all he has energy for right now.  Hopefully he will perk up this afternoon.  I haven't heard from the dietician yet about scheduling for the ketogenic diet.  Looking forward to speaking with her!  Will keep updated.

Clobazam Increase

I just heard from the neurologist.  We are to continue with the planned decrease in Phenobarbital and increase to 12.5 mg Clobazam today, and then in one week will increase Clobazam again to 15 mg.  I thought 12.5 was the max dose, so I'm glad we have not yet reached the ceiling for this med.  We are also getting the ball rolling for the ketogenic diet, just in case we need it.  That way we won't have to wait for all the scheduling, insurance approval, etc.

Clobazam is supposed to be very effective at controlling both infantile spasms and focal seizures, so let's flood the gates of Heaven with prayers for this to work!  These increased seizures over the past few days have really come out of nowhere.  The last med change was 3 weeks ago, I can't think of anything that would have set them off.  I'm thinking it's an attack from the enemy.  Maybe Clobazam is our miracle med!  Levi has reached so many people for God.  He is a living testament that the Lord heals, that He is faithful, that we can count on Him.  Of course the devil wouldn't like that!  James 4:7 says "Submit yourselves, then, to God.  Resist the devil, and he will flee from you."  Matthew 18:20 says "For where two or three are gathered in my name, there I am with them." Please join me in praying for little Levi!

Father God, we lift Levi up to you this day.  We know that your word is true, and that it does not return to you void.  You said that by your stripes, we are healed.  We claim that for Levi right now, Lord, in the name of Jesus!  Protect Levi from the forces of darkness.  We recognize the devil's work here, Lord, and we expose it to your light.  Your word says resist the devil and he will flee.  We bind the enemy right now and forever, Jesus, in your precious name!    Thank you for healing Levi! Thank you for bringing a complete end to these horrible seizures!  Thank you for throwing his health issues away once and for all so he can progress and learn and grow.  We love you, Lord, and praise your holy name!  Amen!

To Increase or Not to Increase.....THAT is the question!

Patrick and I had decided when Levi first began Clobazam that we would finish out the increase schedule.  Many of the meds he's been on in the past made the seizures worse as we went up on the dosage, and so of course we did not continue.  After the last few days, however, I'm questioning the wisdom in that.  Upon initially starting Clobazam, the infantile spasms seizures maintained at the same amount as when he was on Clonazepam (which Clobazam replaced), and brought the focal seizures from around 12 a day down to about 4.  The length and severity seemed much less as well. We were pleased.  As we've increased the dose, both types of seizures have gotten worse.  The focal seizures have gone up to around 20 a day this week, with longer duration.  We also have to keep in mind that as we are increasing Clobazam, we are decreasing Phenobarbital.  So what are the answers here?  I certainly don't know.  I plan on calling our neurologist tomorrow and letting her decide.  She knows way more than I do!  So far our next step will be the ketogenic diet.

Our OT Diane worked with Levi on a ball this morning.  It was just an ordinary play ball.  She draped him over it and rolled him, and it was the perfect size for him to kind of lean over while standing and bearing weight on his legs.  He loved it!  I was so excited I ran right out and got one for him.  We haven't used it yet since he wasn't feeling well today, but I'm looking forward to playing with him and doing some therapy that is fun!  Our vision therapist, Becky, brought some brightly colored toy flowers that Levi enjoyed, and I picked up some of those as well.  I put the blue and yellow one on the side of his lambie bouncer.  He was mesmerized!  For the rest of the afternoon he watched his toys, the flower on the right, the other toys on the left.  It's SO good to see him seeing better and being interested in something!!

Even though he was a bit under the weather today, he took a super long nap and woke in a good mood.  He was full of smiles and huge grins.  Unfortunately he was also full of seizures.  So much so that we didn't get very far into the bottle that he actually wanted because he kept seizing.  He made up for it at dinner, though!

Please pray for wisdom for us as we consider what should be done about Clobazam and the ketogenic diet.  Thank you for all your prayers!

Such a Big Boy!

It took Levi a couple weeks this time to come out of the stupor from increasing Clobazam (Onfi).  He was tired and floppy the majority of that time.  Now he's alert, doing well with head and trunk control, smiling and grinning, kicking his legs, and more.  He doesn't mind being put up on his arms or elbows, which he used to hate, and works hard to bring his head up while in that position.  We took him for a walk all around the neighborhood on his little trike, and he loved it!  I was worried he would become uncomfortable, but he was thrilled the whole time.  He wore his little sunglasses, drawing attention wherever we went.  He's always been good at that though. lol  

We increase Clobazam/decrease Phenobarbital for the final time this weekend.  I'm assuming this is our max dose.  We haven't really seen results with this med, which is disappointing because it's supposed to be so very effective with infantile spasms and focal seizures.  It's not over yet, though!  Although I usually look forward to med increases in the hopes of seeing less seizures, I'm dreading this one.  I just hate to see him go from happy and trying to progress back to limp and floppy.  Who knows, though, he may sail through this increase with energy.

If Clobazam does not work, the next thing we will try is the ketogenic diet.  Please keep Levi in your prayers!

Fun with Aunt Heidi

Yesterday was an eventful day!  Aunt Shelly and I bowled in a tournament in Jerseyville, and Levi went to hang out with Aunt Heidi.  I have to say, that visit agreed with him very much!  The past few days he's been a little monster at mealtimes, and hasn't wanted to eat.  While he was with Aunt Heidi, he finished an entire bottle (which he hasn't done in a few days), and polished off a whole jar of baby food.  What?!  He's going to Aunt Heidi's more often!  He was grinning, and holding his head up better than he ever has before.  After we left her house, the magic continued.  He sat in the cart for about an hour while we shopped at Walmart with not even a frown of displeasure.  We stopped for supper, and he was a delight.  By this time it was past his suppertime and heading on into bedtime.  So what do you think happened when I tried to feed him?  Complete and total meltdown!  It was all I could do to shovel the medicine-laden food into his mouth, and coax him to finish the formula/medicine cocktail.  He was SO tired!  Once I finally got him to sleep, he was happy again, and slept through the night.  It was a wonderful day!  I'm praying he has many more of those from now on!

Fun Day!

This warm, gorgeous weather is exactly what we needed!  Levi and I went for a walk.  He enjoyed being outside.  The sun seems a bit much for his little eyes sometimes, so he wore his cool sunglasses Aunt Mishy got for him.  He didn't seem to mind them at all.  After a while he drifted off to sleep, which provided great picture opportunity :)  This evening we avoided a teething meltdown, thanks to Daddy.  Now he's sitting on my lap trying very hard to keep his eyes open.  I'm sure if I stop typing and disturbing him he'll be happy to snuggle in and fall asleep.  Good night!

First shorts of the season

I'm too cool ;)

All tuckered out