Keto Kraziness

So Andrew, Caleb and Andrew's mom headed back to Springfield last night. Andrew had to work today. I'm here, holding down the fort. Had several people say, "Oh enjoy your time! Just you and Luke....you can rest, read a book, watch movies." I got to thinking, 'Yea, this will be pretty nice. Just me and one baby!" Came all prepared with my book, Office DVD set, and laptop.

Wishful thinking I guess.

My word...has it ever been busy today!! If you need to get caught up on rest, don't check in to your local hospital.

You probably already knew that.

Between blood sugar checks, ketone level checks and all the other "checking in", Luke and I didn't get much sleep. Luke woke up at midnight. Not sure what woke him up, but it's never good when he's startled from sleep. He seized 35 times. This morning he seized another 50 and then has had a few more throughout the day. The seizure monster is still here.

Luke seemed hungry for his 8 am bottle. He drank it down, but unfortunately, it didn't settle well and up it came (not ALL 8 oz thankfully). Mommy and Luke both covered. Yuck.

New outfit, new sheets, new blankets.

Docs were a tad bit concerned about the vomiting so they put an IV in, just in case. So far they haven't used it.

Good news!! Ketone levels are UP, blood sugar is stable!!!

Shortly after the first clean up effort, Luke got started at the other end. My friend Amy in Kansas tells me parents should never make public the details of their children's "business". And I agree with her. I'll move on...

new outfit, new sheets, new blankets

Bridget, the dietician came in and taught me how to measure out the bottle. Me and my gram scale are soon to be great buddies. We also went through the computer program (Keto calculator) that will help us plan meals in the future, once Luke isn't just eating formula. As I was making the bottles, I realized, "Wow, this is A LOT of olive oil in one day" I'm pretty sure my Italian grandma doesn't even have that much OO in a day! As we're measuring......we hear funny sounds from Luke's bed.

new outfit, new sheets, new blankets

S0000....I ask Bridget if we can try to swap out the OO for heavy cream in two of his bottles. We'll alternate. The cream can slow things down, the OO gets things going (obviously!) so starting at 4 pm, we'll try that.

For now, Luke is doing well. He's a little sleep deprived, but other than that, ok. Of course, it will be awesome when we can FINALLY say he's seizure free. Day by day and moment and moment though, we realize that abundant life doesn't come in wishing it all way and living only for seizure-free days. As the blinkie at the top of this page says, "Be happy for this moment, this moment is your life." We enjoy every moment, we soak it in......THIS is the day the Lord has made, I will rejoice and be glad in it! Here are some photos of our moments...

Luke's latte!

His famous sleeping pose

This is my great aunt. Haven't seen her in years!! She surprised us yesterday with a visit. She officially set me straight on twins on the Hoggard side. My great-great grandpa was a twin. My great-great aunt had twins, my great-great aunt on the other side had twins, and two of my grandpa's siblings have twin grandchildren. (hope I got all that right!) Suffice it to say, when asked "Do you twins run in your family?", I will now say, "Yes!" Thanks Aunt D for settin' me straight!!

Our room

Grandma and Luke

Mommy's Keto meal.

Luke's IV

Luke and his many band-aids. He's about to run out of fingers.

Keto Kid

What a great day!! Happy to say, everything has gone so well today. Andrew, Luke and I got to St. Louis Children's this morning around 8:30. (Grandma and Caleb stayed back at the hotel). Luke was admitted and we settled quickly into Luke's private room. Yay! We're waaay up on the 12th floor with some awesome nurses, nerdy neurologists (hey, you WANT your neurologist to be nerdy, you know what I mean?), and one spectacular dietician!

Luke's dietician, Bridgette. She's great!!

Turns out Luke DIDN'T have to fast all day. They changed their policy for kids under 2. So, he ended up waiting only until 1 pm at which time we gave him his first Ketogenic meal! We've weaned the Topamax and today we're starting to wean him off Vigabatrin. Adios drugs, hello RCF formula, apple juice and....olive oil. Yea, for real. We had a choice of adding heavy cream or olive oil and the Italian half of me immediately blurted out, "We'll take the olive oil" My husband looked over and grinned and then shook his head at the nurses saying, "She Italian, what can I say?" Now before you feel sorry for Luke having to down what sounds like a nasty concoction, let me tell you. The kid LOVES the stuff. He has successfully guzzled 3 of these bottles now. He likes it, Mikey likes it!!!

Luke sucking air....drank the bottle DRY!

What's the plan now? Well, every four hours Luke has his blood sugar checked. So far, so good there. No drastic dips. Praying it stays that way overnight. Secondly, we're waiting for his "ketone" readings to increase. It's the production of ketones that can sometimes, surprisingly, stop seizures. When the body processes fat, it produces ketones, hence the high fat diet. Believe it or not, that's it! It all looks so simple when I type it out like this. Of course, there are things that could go wrong, but they seem fairly minor at this point....blood sugar drops, which would mean he'd have to get an IV or extra apple juice, acidosis which would require a tweak in the diet, and potentially (though rarely) some vomiting and lethargy as he gets used to this new menu.

Nurse checking yet another blood sugar. Luke is NOT fond of this process.

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There seem to be so many different thoughts I could write at this point. But for tonight I'll just mention how much peace we feel. When it came time to decide how to treat these stupid seizures, I had the most peace about this diet option. And while I would still make the same choice, it hasn't always been easy these past two weeks....counting seizures, weaning meds, watching Luke's little body jerk beyond his control, all the while knowing you made the right choice, but just wondering how it was all going to play out. Luke seized 30 times on the way to the hospital this morning. I watched, I counted, I held his hand there in the back seat of our van and then I really couldn't do anything else but just close my eyes. I asked God to please grant us the peace we needed and the assurance of His presence. God really did that for us today. We checked in, rode the elevator up, found our room, walked in and.........peace.

There were three people watching over Luke today. First, his nurse who graciously listened as I told her Luke's history and how we'd come about making this choice for the Ketogenic diet. She said, "you did the right thing"...and not in a nurse kind of way and maybe not even in favor of the Keto diet, but in a mom kind of way of "you followed your heart, kid, and there's a lot to be said for that." peace. Secondly, his dietician spent a lot of time with us today. She's the barista serving up these yummy Keto drinks. :) We were talking to her about the use of the Keto diet in different kinds of epilepsy. She says, "Well, we use it for all kinds, but it's especially effective with infantile spasms." She rattled off about 5 more rare-sounding syndromes and conditions that have shown success with the Keto diet, but then came back to "But infantile spasms in particular have really responded to this diet" peace. Our last visit tonight came from the attending doctor. Never met her before. She comes in, meets Luke and looks at us and says, "So I hear you've been doing some reading. Your doctor tells me you all read the article from Johns Hopkins comparing ACTH therapy and the Keto diet. I applaud you for your interest in your sons care. I mean to sit and read through medical journals..... you guys are serious about educating yourselves on all this" (Thank you!! Thank you Dr. Neuro for acknowledging that us parents might understand a thing or two. And we are capable of plodding through medical journals and making sense of it all.) She goes on to say, "Now if it were me.." And I was thinking, 'Oh, here we go. She's gonna tell us she would have done the steroids, but she respects our decision and we'll just see what happens' But, no!! Her sentence ended with, ...."I would have done the same thing!!" ::sigh:: peace.

Must get to bed. Luke and I are snuggled in for the night...both of us in our Christmas jammies. For now I'm just pondering this....Do I wish Luke would never have another seizure? Yes. Do I wish were weren't staying another night at a hospital? Yes. Do I know what tomorrow will bring? Nope. Am I scared that I don't know what the future holds? Sometimes. Do I feel peace right now despite all of that? For sure!

The hospital looks beautiful!

Caleb and I in front of the BIG tree.

Caleb exploring St. Louis Children's art pieces. He had so much fun!!

Thankfulness, cont'd

M- MIRACLES! Yes, they still happen. every. single. day.

N- NAP time. J My boys take two LONG naps everyday. It’s wonderful.

O- Let me think…..The Ozarks…. The Office….sure, those will work.

P- Our PARENTS. So thankful for parents who have always loved us, supported us and showed us with their lives how to trust God and serve Him faithfully. We are who we are because of them and I am so thankful Luke and Caleb have such a Godly heritage.

Q- This is getting hard….. ? I dunno. Quiet nights. Can that count for Q? Both of our babies sleep through the night (most of the time). I remember when they didn’t. I have my sanity back. J And I know it’s not always a guarantee…babies that will sleep through the night. So, I’m really thankful ours do.

R- Republic Elementary II—my former place of employment. This one group of people has shown more compassion and generosity towards me and my family than you can ever imagine. I love you all, I MISS you and I could never thank you enough for all you’ve been to me.

S- Smiles—You parents know what I mean when I say…there’s NOTHING like opening the bedroom door in the morning, peeking around the corner and seeing your child grinning from ear to ear. I am thankful that despite some long, exhausting days , my two sweet boys can both smile and giggle and make me pause in wide-eyed amazement.

T- 242—our Sunday school class. This amazing group of people has meant so much to us over the last 5 years. They know what it means to “bear one another’s burdens”. So thankful to have these people to share the journey with!

U- U2 concert!!!! I surprised Andrew for his 30^th birthday this year and we headed to Oklahoma for a concert he’s been dying to experience! It was worth the money and driving through the night. J

V- Our VAN!! So loading two infants in and out of a vehicle turns out to be a very difficult task. Really thankful we found a great deal on a great van this year.

W- The WORD….as in Scripture. So thankful for God speaking to us and revealing Himself to us through the Bible. Thankful to have it my language and the freedom to read it whenever I want.

X- Sheesh…was this alphabet thing my idea? I’m moving on…

Y- YOU

Z- I’m gonna have to get creative here. Zero: The number of times God has left my side. This is what I know for sure today…..He is ALWAYS with me.

P.S. As I’m typing this, Luke is laying the floor babbling. “Ba ba ba ba ba…da da da”. Luke started babbling a few months back and then kind of just….stopped. Maybe in response to these stupid seizures…who knows. But anyways, he’s been squealing and smiling and all that, but the babbling of syllables was gone for a while. And today, it’s back. He just seems more “present” the last couple of days. In the words of Sara Groves, “It’s the everyday miracles that keep my hope alive….” Thank you, God. Thank you for being with Luke. Thank you for every struggle and every challenge that teaches us how to truly live……how to recognize the miraculous in our every day life. Thank you for the struggles that allow us to see just how big you really are and for allowing us to know our weakness so, in turn we can know your strength.

Ketogenic Diet

After a ton of research, lots of prayer, discussion, silence, more reading, more prayer......and then finally just a mommy's "gut" instinct, we've decided to put Luke on the Ketogenic diet in an effort to control his infantile spasms.

Our other option at this point was to try to something called ACTH therapy, steroid injections given twice a day. This method is known to be very effective, but somehow I couldn't get a peace about it. Technically, it waits ....there on the back burner, ready to be used, but I truly pray Luke never needs it.

The plan now is to wean Luke off of one of his anti-seizure meds (Topamax) over the next two weeks. We will then take him to St. Louis Children's (not sure on a date...somewhere around the 7th of December) and he will admitted for about a week to start the diet. The diet change at this stage is thankfully just a change in formula. Luke does eat some table food, but he hasn't really taken to it much. So, it shouldn't be a huge change for him to just drink a different kind of formula for a while.

Your unending support, ceaseless prayers, words of encouragement...it is all so very much appreciated!! God is with us!

Decisions, decisions

We just talked to our docs in St. Louis this evening. They have scheduled Luke to be admitted to St. Louis Children's on Wednesday, Nov. 25th. Luke started a new med, Vigabatrin, about three weeks ago to control his infantile spasms. The seizures haven't stopped even though we have increased the dosage (in fact on most days, the seizures are worse than before), so it's time to look at a different option.

As we've stated in other posts, Luke's prognosis is very, very poor at this time. The prognosis can be "better" with QUICK and COMPLETE control of the seizures (that is 100% seizure free, not just a reduction in seizures). So, that is the goal right now.....getting the seizures stopped...and getting them stopped as soon as possible.

Luke's doctors are recommending that Luke be admitted on Wednesday and begin ACTH therapy.....an aggressive steroid treatment used to treat infantile spasms. The treatment will require a 3-4 day hospital stay. Afterwards, Luke would return home and we would be giving him steroid shots at home for another 4-6 weeks. Luke will have a suppressed immune system and will have to stay at home for the course of the treatment. He will be closely monitored by a home health nurse as the steroids can cause high blood pressure and other serious medical problems.

Over the past couple of weeks, Andrew and I have become increasingly interested in something called the ketogenic diet. It is a high fat diet sometimes effective in treating infantile spasms and other forms of epilepsy. The diet can be quite difficult to follow and hard to implement in toddlers/small children. But, because Luke is still mostly on formula, he would be able to switch to ketogenic baby formula and remain on this diet for a couple of months to see if it helps at all. Luke would be admitted for one week to begin the diet and achieve "ketosis" and then sent home with the formula. We can't start this diet until he is weaned off of one of his meds, Topamax. It will take two weeks to wean him off of this med.

Our doctors have been REALLY great. It's wonderful to hear them say over the phone, "We've met Luke twice. You're his parents, so we trust you completely. We want this to be a team approach". We really feel we will get their support either way. If left up to them, they would do the steroids first and then if that doesn't work, try the ketogenic diet. Their reasoning for this is simply that the steroids will work faster and since we're trying to preserve his brain, we want to get him seizure free as soon as possible. The steroids are just very intense and we (well I say "we"...mostly it's just me.. Kristi) are very scared of this treatment. Personally, I'm just not sure it's the answer for Luke. If the steroids do work, they'll work by Christmas, whereas the diet can take 2-5 months to work.

Of course, most of all, we want what is best for Luke. All we're looking at are stats....and the medical community's best guess of what will work. Every child is different, and so it's hard to know what to do next. Thank you for your constant prayers. We have a such a huge support system...it's amazing!! Please pray God will give us wisdom. We asked the doctors to give us until Monday and then we would call with our decision....

An ever present help in time of need!!

Really trusting this promise tonight. As you know Luke's docs in St. Louis started him on a new med about two and a half weeks ago now. In addition to the new med, they increased his Topamax dosage quite a bit too.

For the last.....4, maybe 5 days, it's been very evident that Luke is having more seizures and not less. Could it really be, I keep asking myself. Am I just imagining this? Could the medicine that's supposed to be helping him actually be making him worse?

Couldn't get this thought out of my mind this evening as I've watched little Luke seize so much the last few days. Put a call in to St. Louis about 10 minutes ago. Thankful that Luke's doctor was actually the doctor on call tonight. Calmly I said, "Am I just crazy or could this medicine be doing the exact opposite of what we need it to do?" "Mmhhh." She says. "Never heard of that".

The paperwork that came with the Topamax says, "Contact your doctor immediately if your seizures get worse". So, I'm thinking it's happened at least once before for them to put the warning on there.

Her answer was "I'll look into it."

Our docs are GREAT. They truly are. They are just so finite in their wisdom. And, unfortunately the only answer right now is.... try this drug and if it doesn't work, wean off of it and try another drug and if that doesn't work, try another...and on and on the vicious cycle goes. The next one we try will be drug #4, and well....we're just not getting anywhere.

I hesitate to type out the same two words, PLEASE PRAY!!! I know you're praying your hearts out. But...please pray!

I hung up the phone, grabbed my mom's hand and put my other hand on Luke and asked God again for the impossible. Trusting tonight that my God will be just that...An EVER PRESENT help in times of trouble. And feeling really grateful that His answer is never, "mmmh...I'll have to look into that."

Will keep you posted. Thank you for praying.

Whew...it's been a long day. Thankful for a safe trip to St. Louis and back.

Luke had the EEG first. He does so great...it must be old hat for him now. They attach 25 different wires to his head and secure them with some very STINKY glue. It's yucky. But anyway, he fell right to sleep, which was great because they always need some portion of the study to be while he's sleeping. So, the EEG showed no changes. :( I'm not surprised...he seizes everyday, so I didn't really expect his brain to look any better today. Still, it's hard to actually have them say that to you. The plan now is to increase the med and see if that helps at all. We return to St. Louis on Nov. 25th. If nothing has changed by then, they'll discontinue this med and do the steroid therapy. Sigh. I get a knot in my stomach every time I think about it. I just really don't think Luke would handle steroid therapy very well. It's suppresses the immune system (they told us we'd be home bound again for 3-6 months since it's flu season), can cause dangerously high blood pressure and has several other adverse side effects that I think would be really hard on Luke. So, the truth is, I'm pretty scared. We have 12 days for something big to happen. Nothing's impossible, I know.

Luke also had a spinal tab this afternoon. He did well for that also. Had to be put all the way under, but he handled the anesthesia ok. Thank God. This was done to check chemical levels in the brain (specifically neuro transmitters from what I understand). They are still trying to figure out exactly WHY he is having the spasms, so that's why they did the spinal tap. The results of that won't come back for several weeks.

If you're reading this and praying, thank you. The longer we travel this road with Luke, the more we come to understand we are truly FEARFULLY AND WONDERFULLY made. It's just unbelievable how every intricate detail has to come together just right in order for things to work like they should. It's comforting to know we are asking Luke's CREATOR to take care of him. We have some great docs, but it seems now, more than ever, we need a miracle.