Back to Normal

Sorry for the bullets-so much to say...

• Since my last mega-post we decided we are not doing the Ketogenic Diet right now. Jim (my father-in-law) noticed that if we introduce the Keto Diet and Topamax at the same time we won't be able to figure out which one is working. That made sense to us and also made me feel relieved. This allows us to let Oliver drink as much water as he wants which solves some of the issues with Topamax. Dr. Mikati was in total agreement with us about this but, did ask if we could stick with the Low Glycemic Index for now. I feel fine about this because again, if we go changing too many variables, it makes things more confusing for Oliver's treatment. However, I am going to relax a bit about the LGIT. Go with the flow a bit more and slowly bring back in some carbs. I'll still keep the foods similar for now as we work through all of this. Overall, I feel like the death-grip of the diet has abated.
• The Topamax is controlling the seizures but it is making Ollie VERY dopey. He is like a drunk sailor all day long. He is falling and floppy- a continual space cadet. It is a challenge to keep him from hurting himself as he seems to have no spacial awareness. We are hoping this will get better. We plan to call the doctor tomorrow if there isn't improvement.
• As far as Oliver's development we have no idea where he is since the side effects are so problematic. When his seizures went away before he usually "took off" developmentally. This time we can't tell much due to the fact that he seems stoned most of the time. It is frustrating to "fix" one problem (the seizures) but trade it for another (drunk toddler). I mean we are thankful, but we also miss our wild, alert Oliver.
• The photos above are from his Easter Egg Hunt at preschool. The teachers there are so wonderful. I feel such gratitude for their prayers and love. Those hours each week when I get a break and know that Oliver is safe and well cared for, are precious to me. Anyway back to the hunt, Oliver, just wasn't into it. I just decided to let it be. Another year, hopefully and he'll get it?

Thorns & Roses

We remain thankful for all the goodness and love we see despite these discouraging days. Oliver continues to brighten our lives in unexpected ways which lightens the load. He is at a magical age! So much curiosity and freely given affection :) I wish you all could come to one of his dance parties.

Medical Update:

We had Oliver's lab work done on Tuesday and it came back within the normal range with the exception of the Co2 which was low. His level was 21 (26 and above is normal). We'll be giving him potassium to balance out this electrolyte imbalance.

Yesterday Oliver had 10 seizures. It wasn't good. He ended the night with 3 seizures all within 30 minutes or so. I am convinced that some of those were spasms and those are the really troubling kind. The spasms are thought to be much more detrimental to development than the complex partial seizures. Without an EEG or an expert it is hard to tell the difference sometimes. I know at least 3 yesterday clearly were spasms. It is important to differentiate because the treatments are for the 2 types are different.

We have the MRI and EEG scheduled at Duke for April 26th. With the new surge in seizures Boston is wanting us to work more closely with Duke. I am thinking we may have to go in next week for an EEG if things don't improve. We'll see what Dr. Mikati says about all of this. We are awaiting a call from his office.

In other news, yesterday was the first day I met another mom of a kid with TSC. Darlene and her son Landan drove down from Jacksonville to meet us. It was an enormous comfort to be with someone who "got it." They were both a great inspiration to me and I feel so blessed we were able to meet. I hope in the years ahead to make more friendships similar to this one.

As for the diet I have gotten some perspective recently mainly by talking it through with some wise friends. The fact that the diet isn't working has made me feel really sad and like a failure. I've never tried so hard to do anything in my life and never been more disappointed with the results. It took Julie (one of those wise friends who is also a special ed teacher) to remind me that all I can truly control is what I do. Sometimes I can even control the environment. How Oliver responds to what I do and the environment is beyond my control. So even if I do the diet "just right" and make the environment as helpful as possible, I still can't force Oliver to respond, perfectly every time. He is 2 after all! Try to make a person eat something they don't want to- it is impossible, I assure you! I think the other part that is very stressful is second guessing myself. The diet is exploding with such opportunities. It drives me crazy. So here is what I've decided about due to my new perspective on the diet debacle:

- I will continue to do this diet with excellence. I will continue to make the environment as helpful as humanly possible for Oliver while eating/taking meds. I will remain playful and creative despite the disappointments.

- I will acknowledge that I can not make Oliver respond to the diet any certain way. (You have no idea how hard this is for me being the type-A, control freak that I am)

- I will not look backwards and second guess myself. Waste of time. Can't be undone. Focus on my "daily bread."

- I will have courage. I will try again everyday. It feels like running into a brick wall most days, but I will keep trying. Every morning I will suit up and get ready to run, hoping one day I'll bust through the wall or the wall will be removed.

- If we "quit" the diet because it doesn't work, I can rest assured I did ALL I could to make it work. In the end, Oliver and I both have to be in sync with the diet for it to work. It is that simple.

I want to end with something good. I've laid out all these thorns and I want to end with a rose. This song has been a great comfort to me during the past few weeks from Sandra McCracken's CD, Feast or Fallow. The whole CD is awesome, richer with each listen. Listen now if you want. My favorite lyrics from the song "Petition" are:

"You raise your hand to still the storms

That rage inside my head

Revive my heart with gratitude

Love quell my doubt and dread

Give me a sure and rested soul

From every fear relief

The spirit’s power and presence mine

To ever comfort me"

More Tweaks

Yesterday at the eye doctor we got great news. So far, Oliver's eyes seem unaffected by Sabril. This is what we expected because this was considered the baseline appointment. Nevertheless we are really thankful! The appointment took a while so I was really glad Grandaddy Jim was with me. Oliver was really good considering the environment and the 2 hours we were in that tiny office. He had a seizure at the end of the second eye exam and I was glad the doctor got to see it. He said he didn't see anything to be worried about with his eyes (lazy eye, directional eye gaze, etc.) It is always good when an expert can witness one and give us their thoughts. Unrelated to Sabril, the dr. said Oliver has a moderate astigmatism. He said we would know more at Oliver's six month follow-up and it is possible when he is 3 or 4 he'll need glasses. I feel like glasses are the least of our worries, I mean we are worried about blindness so, glasses we can do!

Yesterday I spoke with Heidi (the nutritionist) in Boston. As I guessed, I had been doing a few things wrong with the diet. I was giving Oliver a few products that I shouldn't have. Also, he was too low on protein and calories. Basically there are some more tweaks that need to be made. I've been cooking and readjusting more today so hopefully the balance will be better. Oliver had a whopping 10 seizures today so I am really motivated to get this right! That is the highest seizure count ever. They said it might get worse before it gets better- I sure hope that is what is happening?

Marathon

I am told it is a marathon- not a sprint...

On Monday, I met with a lovely woman, Porter Young, who has had a child on the Ketogenic diet for 4 years. The Keto is different from the LGIT but, they are similar enough to get some great advice. Porter was a ray of sunshine and was such an encouragement to me. She gave me some great ideas on how to manage my time and plan out meals. I left her house (2 hours later) feeling energized and thankful I made a new friend. The best part was meeting someone who understood what this diet business is like, what it really means to make it happen day in and day out.

So after my meeting I revamped my plan. I knew there had to be a better way. I would guess I was spending an average of 2-3 hours a day on the diet. That is not sustainable. No matter what your system is, this takes time, but 14-21 hours a week is insane! Somehow I didn't have an extra 14-21 hours a week hanging around :)

I started my new system by using some of Porter's recipes. Once a week I'll crank out a 4-5 recipes that can be used all week. I called in a helper (Shaunna Kennedy), God bless that woman. We were like little worker bees in this kitchen. We got so much done and it was super duper helpful to have an extra set of hands. ((Side note: Shaunna's hubby, Sam, built our file cabinet for us the other day. The Kennedys are AWESOME and are really showing us the tangible love of God. Who knew a file cabinet and peanut butter balls could be such a blessing but, they are real gifts to us!))

Next, I bought loads of little tiny containers. Porter boxes up all of her daughter's meals for the day in one container or with rubber bands. So 50 new containers later, I was able to box up everything (except for drinks) that Oliver will consume for the next 4 days. Next, I calculated it all to make sure we had the correct amount of fat/protein/carbs and each day is "in balance"! I am really hoping that for the next few days I can relax? So all in all, if this works, it definitely saves time.

So yesterday I spent 4.5 hours on the diet. Whew! And that is with Shaunna's help! This thing is a beast however if I only have to do that twice a week that would be 9 hours instead of 14+

The hardest part of it all is that Oliver had 5 seizures yesterday. I can' t help but wonder if I did something wrong with the diet. (( Don't worry- You don't have to reassure me that I didn't make a mistake, it is ok, I probably did.)) I just have to give myself grace and spend more time on the phone with the dietitian. It stinks to feel like I might have "messed up" the medicine for Oliver. I know it is just part of the learning process and it will get easier.

As for those 5 seizures, we increased the Sabril this morning. The folks in Boston said it is too early to tell if the diet is working for Oliver and in the meantime we need the seizures to stop. Due to the seizures in the day- last night Oliver had a stomp party, on the hour, every hour. It sounded like a small elephant was doing a River Dance directly above our heads. Wish I had been in the mood for some Irish clogging. Surprisingly, I was not. When I went in his room at 4 AM, I opened the door and he yelled "Hi!" like it was 7:30 AM. Gotta love those toddlers :)

We're off to the eye doctor. Hoping for good news and a seizure free day :)

Let's end with some encouragement for the marathon:

May the God of hope fill you with ALL JOY and PEACE as you trust in Him, so that you may overflow with HOPE by the power of the Holy Spirit.

Romans 15:13

Bumpity Bump

Yesterday Oliver had 3 seizures. I think it is due to going down on one medication, Keppra. This med seemed to do the least for the seizures and was the first the doctor wanted to wean. Perhaps it was doing more than I thought? The seizures could conceivably be triggered because I messed up the diet. I don't think that is likely but, it is certainly a possibility. The pressure of that is daunting- gotta bring my A game all the time, every single day :)

This morning I went back to a 1/4 pill of Keppra (instead of none) and it seemed to help. Oliver had a better day and we only saw one, very mild seizure. So, all hope is not lost. Just a bumpity bump on the TSC coaster. We'll see how tomorrow goes...

On Wed we have our appt. with the pediatric opthamologist. Part of the waiver you sign to go on Sabril says you'll have an eye exam within one month of beginning the med. We are praying that the Sabril isn't damaging Oliver's vision. At this age it is very hard to tell that there is damage until it is severe. So, we'd love your prayers on this matter!

Oh, "No!"--It's another Mardi Gras Parade

It has been more than a week since we started the how-much-fat-can-I-get-in-this-meal-diet. Honestly, it hasn't gotten much easier- probably a bit harder. They say it gets easier...? I sure have been praying it will. Good thing the good Lord doesn't tire of our prayers- I've been asking for boat loads of help from Him (and everyone else) the past 8 days. Thanks to the many helpers-you make me feel sane :)

Oliver's favorite word these days is "NO!" He says it even when he doesn't mean it----- gotta love those 2 year olds! :) He's been saying "NO!" with special enthusiasm to many of my LGIT recipe creations. (In his defense one really did look like something you wouldn't normally eat). Regardless, of outward beauty, you would think with all the fat they'd be yummy? Frankly, the rejection is getting a bit old, if you know what I mean. The first few times you "shake it off" but on smoothie try # 3 (within 15 min) I start to feel discouraged and creatively challenged. There are only so many "creations" you can make with these nutritional guidelines.

This whole diet thing is so different than regular toddler meal times (which are already, how should we say, difficult). We don't have the luxury of "waiting til he gets hungry enough to eat it" with this diet. Oliver has to eat because the food is the medicine. I must calculate everything he puts in that cute pie hole which takes a surprising amount of mental sharpness. So if he rejects salami, I try something else with similar fat/carb/protein content because I need him to consume 110-115 grams of fat a day! As a side note- that is A LOT! So basically every morning begins a new Mardi Gras parade of fattening foods {minus the beads, boobs and booze of course} :)

After the parade starts, I gear up for my new job as food clown--hawking my creations--even singing about that yummy avocado/heavy cream smoothie. The good news is I think I am turning out to be a rather decent food clown. Now if I could just join the circus...maybe one that visits spas...

As for the seizures (the reason for all this nonsensical talk) he had 4 Sunday, which is more than we had seen in a while. The great news is he has had another seizure free streak (Mon AM to tonight)!!!! Was it the med or the diet, a long term miracle- just too early to really know- regardless we will celebrate it. Thank you, good Lord! Now that is the reason I go on clowning and cooking. Could there be a better reward for the long hours and smoothie rejections?

Cauliflower tastes like potatoes?

Oliver continued to make his food preferences known today. Does he like salami? Not so much...good thing I bought enough for the US Army at Costco. I mean who doesn't like Salami?

What did he like the most from the whole day of food taste testing? Drum-roll please....Mock Garlic Mashed Potatoes (made with Cauliflower). I have to say they were very yummy! Once you get the consistency right, I seriously bet you could fool people into believing they were taters. Not only did Oliver like them but, my other guy, Andrew liked them too! If that isn't success, I don't know what is :)

So really you should give them a try sometime. If that rave review doesn't convince you, think about how much time you'll save by not having to peel potatoes.

http://www.foodnetwork.com/recipes/george-stella/mock-garlic-mashed-potatoes-recipe/index.html

As far as seizures, Oliver had 2 today. Tonight he had one where his body trembled all over. It was brief, but it was hard to watch. He hasn't done that before. He was totally wiped out afterward so we put him to bed early. We were told that the seizures might increase in the beginning of the diet before they decreased. At this point, we aren't super worried, mainly we're weary.

Today, Oliver asked for "Papa" on and off. (Andrew wasn't working at home-he was scouting locations for a movie.) It was really sweet because he's never done that before. He kept looking for him in all his usual spots. Thankfully, papa made a grand entrance right before Oliver fell asleep. It was a sweet little time of bedtime prayers and songs for our family of 3. Not a bad way to end this hard workin' day!

Diet Update

OK quick little background. Most of you know I went to grad school for clinical social work, which means I was trained to be a therapist. Our program focused on the Strengths-Based/Solution Focused modality. In SBSF you ask clients to rate things on a scale from 1-10. 1 being the worst you could possible imagine and 10 being the very best. So as I've used my training to think about this diet, I thought I should rate it. Yesterday was a 4 and today (so far) has been a 6. I'm guessing the diet will never be a 10 kind of experience but, maybe in a month or so I can say it is an 8 or a 9? Mainly, I just want it to work for Oliver and be sustainable, long-term. Sorry to be so dorky with the 1-10, but it helps me to explain it :)

I would say Oliver has eaten around 50-60% of what we've offered him. He isn't loving all the textures (do you know his Daddy?) but we are hoping with repeated exposure he'll learn. The real challenge is that you want the ratio to stay the same 60% fat, 20% protein and 10% carbs for each day; so you have to calculate as you go. It is sort of like checking your budget before you buy something. It helps to have a running total in your head or a strict plan. So far my very detailed plan isn't working so I'm trying to be more flexible and do the math. If planning is my strength, plan Bs surely aren't. I'd like to think since this all happened with O that I've gotten a teeny-tiny bit more flexible? Surely this diet is an exercise in plan-B, and C, and D!

Tonight he enjoyed dinner. Mushrooms sauteed in a lot of butter mixed with quinoa. Carrots with butter and cinnamon and the usual, heavy cream. I feel really good about that :)

Today I spent an hour in our local, natural/organic grocery store, Tidal Creek Co-op. I found the almond flour I was looking for which is awesome--oh wait, it costs $10.47 a pound!!! That is going to be an expensive batch of muffins! I also found some other packaged options that might taste good. Every mom of a toddler knows you want to have a stash of food somewhere when the inevitable, really ugly, tantrum happens. Perhaps the $3.49 pumpkin seed bar will do the trick? I'm already calculating cost per bite and it better calm him down or start sprouting a money tree (it is a seed, right?)

As I checked out at Tidal Creek I realized that I left my reusable grocery bags at home (gasp). Oh and my Birkenstocks (just kidding, sort of). OK I can't help it, I digress...the lady in front of me really did have on Birkenstocks with tie-dye socks. Hippie sighting are the best! OK back to the bag, so basically I had to do the walk of shame with my paper bag. I am dramatizing a bit but, if you have ever been in Trader Joe's or Whole Foods you know the feeling. At least I didn't commit this faux-pas on Earth Day :)

((Oh and just so I don't get blasted...I do use reusable grocery bags-most of the time..and just because you do too, or you eat "all natural" doesn't mean you are a hippie...but if you are a hippie, I like you...I just think your Birks and socks are out of fashion...Dear Hippies...I think you are groovy...thanks for giving us so much good "health" food! PS- my mom enjoyed being one of you a long time ago. wink.wink.))

So many of you have asked about the diet specifics. Here are the things "on" the diet. Portions are rather large of the veggies and fats, smaller with the fruits. There is a lot more to it than that but, for my curious, foodie friends...here ya go:

Approved Fruits:

Apple

Berries

Cherries

Grapefruit

Grapes

Lemons

Limes

Nectarines

Oranges

Peaches

Plums

Strawberries

Tangerines

Kiwis

Mangoes

Pears

Veggies:

Artichoke

Asparagus

Bamboo Shoots

Bok Choy

Beans, green or wax

Bean Sprouts

Broccoli

Brussel Sprouts

Cabbage

Carrots, fresh, boiled

Cauliflower

Celery

Greens (Collards, swiss chard (yeah right, what the heck is that?), lettuce, spinach, kale)

Cucumber

Mushrooms

Peppers

Eggplant

Tomato

Yam

Zucchini

Bread/Grains:

McCann’s slow cooking scottish/irish oats

Kellog’s all bran

Museli

Post Bran Flakes

GM Fiber One

Chex, Mult-bran or wheat

Quiono

Jospeh’s Low Carb Pita and Lavash Bread

Fats:

Avocado

Bacon

Butter

Cream/Half&Half

Cream Cheese

Coconut Milk

Black Olives

Oil

Margarine

Mayo

Nuts

Peanut Butter- “ALL Natural”

Salad dressing

Seeds

Shortening

Sour Cream

Tahini

Meat/Protein:

Eggs, tofu, tempeh

Cottage, Ricotta, full fat cheeses, mascarpone

Hot Dogs

Beef, Chicken, Pork,

Beans ok but, high in carbs- limit intake

Bologna, pimento loaf, salami, sausage, pepperoni

D-Day (Diet Day!) Round 1

It is 7:57 AM and we've officially started the diet (gulp). The first meal didn't go as planned. Big surprise, right? When did Oliver stop liking eggs with cheese? We started off strong with him sucking down his "milk" AKA 2 oz. of heavy cream. As far as the eggs go there were loud shouts of "NO!" So the first meal wasn't a success, guess it is normal to strike out the first time.

Hopefully snack will go better. At least the heavy cream was a success! Who knew? Oliver even asked for more :)

Here is my set-up for the diet. We traded out the old banana hook for the food scale (bananas aren't on the diet). Sad since they are the most convenient and cheap fruit ever. Then the tray-o-medicene. We've got 3 seizure meds and 2 breathing meds. Lastly, my laptop for counting every single thing OT consumes. I'm trying to figure out a system for all this math. Funny how I avoided math like the plague in college and grad school and now it is my main brain activity of the day :)

I'm going to go look for my big girl panties...

SEIZURE FREE for 1 WEEK!

We have officially broken a record. Oliver has been SEIZURE FREE for 1 week! With all the travelling madness we didn't want to let this moment pass us by. This is not any kind of guarantee for the future but, we want to REJOICE and to GIVE THANKS! This is an AWESOME day. Oliver is doing so well and we are savoring this season. I really just want to shout for joy! WHOO-HOOO!!!! YIPPEEE!!! THANK YOU LORD!!!!

We still have moments, as all parents of kids with epilepsy have, when we think "was that a seizure, a little tiny one?" So there are still moments of doubt but, for now we are THANKFUL! We are letting the joy linger in the air. We are letting our minds and bodies relax in this peaceful place.

Psalm 66:5

Come and see what the Lord has done, how awesome his works in man's behalf

Boston Trip

Our trip started in a hurry as we left late Monday night to beat the epic winter storm. We arrived in Boston at 1 AM. On Tuesday morning we got a call from Dr. Thiele's office to see if we could come in ASAP. Our appointment was originally scheduled for Wednesday so we were really thankful we decided to fly out Monday night.

Getting to the appt. Tuesday was an adventure. Our amazing hostess, Carolyn, elegantly battled the treacherous road conditions and delivered us safely to our appt. It took us 1 hour to get 2 or 3 miles. The roads were unlike anything I've ever seen. There were HUGE banks of snow on every corner.

At the appt. we first met with Heidi, the nutritionist. Oliver wasn't feeling well and slept through most of that time. It was really helpful to be "all ears" as we learned about the complexities of the diet. We left with a packet of information that will help us in the days to come. I am considering starting a completely different blog about this diet since there are few resources and it is fairly new. If I do, I'll let you know. I'm sure you are just dying to read more of my ramblings :) I feel excited about this as an option but, really overwhelmed at the HUGE lifestyle change it will be for us. I know I can do it but, dang if it won't be some long hours (at least in the beginning). We've decided we'll start next week once I have time to buy the food and get a plan. Some of the approved brands are only available online. I also need to spend time at Tidal Creek Co-op and Harris Teeter seeing what brands they carry.

After we met with Heidi we were able to meet with Dr.Thiele. She had another pressing appointment so it was a miracle we got to see her. Our meeting was rather brief because she needed to get home to be with her kids. The weather and road conditions were really bad and the schools were letting out early. We were really grateful we got all this done in one chunk of time.

She answered all of our questions and left us feeling encouraged and hopeful. We asked about the vision risks with Sabril. She said since Oliver was on such a low dose the risk to his eyes was very minimal. She said she wouldn't be worried, at all, if her own son was on it at this low of a dose. She was extremely encouraged that Oliver is responding so well to such a low dose of Sabril. Apparently the dose could be more than quadrupled so there is lots of room to move up. We talked about our options if the diet/Sabril don't work. In a poignant moment I asked "if these 2 don't work are we out of options, other than brain surgery?" She said "there are always options." And that is why we love her so much- you really feel like this thing is manageable, not easy but, manageable. She said if, big if, these don't work our next step would be another EEG to see if we can figure out where the seizure activity is originating. If an area is found then he may or may not be a candidate for surgery. There are many "ifs" but we are glad we understand the process. It feels good to know what we are dealing with and how to move forward.

If the diet works then she said in 3-4 months Oliver can discontinue the Sabril. We'll also try to wean him off the other 2 meds during that time as well. It will be a slow, methodical process so we'll have to be patient as we adjust. It would be a dream come true to have Oliver seizure and med free!!!!

Our next appt. in Boston (barring a crisis situation) will be in the summer. That trip will also include all our annual tests- brain and kidney MRI, EEG, etc. We are looking forward to much better weather on our next trip to Bean Town :)

Throughout our appt. in Boston Oliver was wheezing and looked rather sickly. The nurse thought we might should have him checked by a dr. and by the end of our time with Dr. T she was also recommending that. With the weather being so bad the pediatrician (in the same building) wouldn't see us so we had to schlep to the ER. We were ill equipped to walk through a blizzard but, thankfully it was not too far.

Once in the ER we were taken back immediately. We were there for 8 hours and Oliver got 5 breathing treatments. It was really crazy. There was a chance he was going to be admitted. They tested him for the flu and other viruses. They even speculated that he might have pneumonia. The final virus test came back as RSV. So instead of Andrew having the flu earlier in the week he probably had RSV and then Oliver got it too. Since Oliver already has RAD (Reactive Airway Disorder) the RSV hit him hard. ((In case you are wondering...you don't get diagnosed with asthma until you are 5 because so many kids outgrow wheezing.)) Needless to say we were exhausted! At that point, it had been an enormously stressful and draining string of days. We were very low on sleep and high on stress. By 9 pm Oliver was in a condition that allowed for us to be discharged.

Amazingly, Carolyn, was able to safely pick us up and get us home on Tuesday night. We didn't sleep well mainly due to Oliver's constant coughing but, we were so glad not to be in hospital room. The rest of our time in Boston was in the townhouse. The weather was really bad and with Oliver's illness, going outside didn't make much sense. It was nice to look out the window, onto the street, and feel like we were in a snow globe. The snow was gorgeous and the people watching on the sidewalk was superb.

We ended our trip with a slightly delayed flight home; a blessing since cancellations were abounding. We were so thankful to get home and get rested! Travelling with a toddler has to be on the top 5 of the "Most Stressful Life Events List."

When we got home and walked in the door we saw this...

It is such a big part of the Boston Trip Story. In short it was a HUGE basket of gift cards, notes, babysitting certificates, snacks, wine, beer, etc. It was amazing. It made us cry. We felt totally unworthy of such a luxurious and thoughtful gift. So many friends contributed to it and we felt incredibly loved. We've said this before and it is so true, we are rich in friends. We couldn't ask for a better community of people to be planted in. We'll treasure the date nights and wonderful ways these gifts have pampered us. It is really overwhelming and humbling. Our hearts were so full of gratitude and surprise. It was a really, really great homecoming gift!!!!

One friend put spiral bound index cards in the basket. It is full of encouraging scriptures. It is a treasure! The cover said this:

"He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young."

Isaiah 40:11

Low Glycemic Index Treatment

I've talked before about diet(s) that can control seizures. There are 2 very effective ones. The first one is the Ketogenic Diet which is highly restrictive and very high in fat. It is very intense and to begin you must take your child to a hospital so they can do a 48 hour fast. Can you imagine that with Oliver? You have to literally weigh all the food you feed your child so it makes eating out virtually impossible.

The good news is there is a less restrictive, but still challenging diet, called the Low Glycemic Index Treatment (LGIT). This treatment was pioneered by our team in Boston. They published their first study on its efficacy in 2005. Here is the link to a video about an 11 year old girl that went on the treatment and reduced her seizures from 20 a to one a week!

http://www2.massgeneral.org/childhoodepilepsy/families/rose.htm

We are considering this diet as a treatment option if Clobazam doesn't render Oliver seizure free. So far we have seen 2 seizures today that were shorter and less involved than the ones a week ago. We can go up quite a bit on the Clobazam dose before we optimize it. Our hope is once we go up a bit more they will go away completely.

Lastly, for the 1% of you that want to know a little more than that, here is more info on specifics:

http://www.charliefoundation.org/content/low-glycemic-index-treatment