A Big Boy Day

Normally, I try to limit the number of activities I subject Bertrand to on therapy days, but happily today Bertrand proved that my over-protectiveness is no longer necessary! He handled six crazy errands and then his occupational therapy at Shriners Hospital like a pro. At one point I was holding him on my hip at Ace Hardware, talking to him about paints and enamels (he wanted a yellow spray paint can but I explained to him that we needed clear enamel spray) and he was so engaged, it felt like I had a normal baby. He sat on the counter, flirted with the cashier and "helped" me check out. He was so well behaved all morning and afternoon that I thought he'd certainly fall apart at therapy. Bertrand proved me wrong! At the start of therapy he communicated he was thirsty WITH A SIGN (not a fuss!), drank, and proceeded to have a fuss free therapy session! He is now taking a well-deserved nap, and I can't help but feel so proud of my big boy. Days like today give me hope for tomorrow. :)

Review: "The Ketogenic Diet"

A few days ago I read The Ketogenic Diet: A Treatment for Children and Others with Epilepsy by John M. Freeman et al. The authors are members of the Johns Hopkins team which has developed, preserved and championed the ketogenic diet. The book is in its fourth edition and, after reading it, I can see why it is required reading for almost everyone commencing the ketogenic diet. I highly recommend it to anyone interested in learning more about this alternative, non-alternative treatment for epilepsy!

Due to decades of scientific research done on the effectiveness of the ketogenic diet, the authors stress that it is not to be viewed as “alternative” medicine. The diet IS traditional western scientific medicine. The mechanisms that grant the diet’s effectiveness are as well understood as (and even more well studied than) the mechanisms which govern modern seizure medication’s effectiveness. Sadly, by this I mean, that all epilepsy treatments remain a bit of a mystery to the scientific community.

The book is every book you’d want or need to start the ketogenic diet rolled into one. It covers the history of epilepsy and the ketogenic diet. It attempts to explain the possible biological and chemical mechanisms at work in the ketogenic diet and even the very promising, modified Atkins diet. The Calculations section is basically a workbook, which leaves one more confident about being the sanity check for your dietician. The recipes (both Ketogenic and Atkins) are excellent, and in this section and through out the book, the diet’s use in infants is heavily covered! Lastly, the book is peppered with anecdotes and examples drawn from a vast pool of humanity, which bring the content to life.

While the book is forthright on the limitations and expectations one should have regarding the ketogenic diet (I am now back to being pessimistic about Bertrand’s odds of being helped by the diet), I was heartened by a section entitled “Speculation: The Future Role of the Ketogenic Diet.” The authors hypothesize several additional uses for the ketogenic diet outside of epilepsy--the one that caught my eye was as a treatment for cancer. If I ever get cancer (brain cancer in particular) I have nothing to lose by trying this experiment!

“Brain tumors appear to feed on glucose. Indeed they “steal” glucose from the surrounding brain tissue, causing the surrounding tissue to die. Whereas normal brain tissue can use ketones such as beta-hydroxy butyric acid (BOH) as an energy source, tumor tissue does not appear to have the ability to metabolize ketones... Would it be possible to “starve” a tumor by reducing its glucose supply, while feeding the brain with ketones?”

Fascinating, huh? :)

Tracking Seizures

In order to objectively judge the efficacy of the ketogenic diet, we need to find a way to count Bertrand's seizures. This poses a BIG problem because he has several seizures (2 to 6) every minute, even in his sleep. That is close to 6,000 seizures (absence, complex partial with automatisms, drops, and startles) a DAY! (The number of XL spikes and XL events on his EEG are double to triple that, so I am glad I don't have to try and count those!)

Knowing that, is there any wonder why he is so severely developmentally delayed? He can barely follow through on his impulses or commit anything to memory! When I try to count and log all of his seizures, I literally can't do anything else. By the time I'm done checking off the kind of seizure and writing down the duration, he's already had another one and I've missed it. It is very frustrating--but imagine how much worse it must be for Bertrand. :(

Furthermore, due to the nature of his seizures you have to be staring Bertrand in the face--you can't be across the room or sitting on a chair--you have to be on his level at all times. Every eye roll, head jerk, mouthing motion, and meaningless hand movement indicates that a seizure is occurring. I'd gladly stand a 24-hour vigil for B, except that someone has to play with him, feed him, change his diaper, get his books/toys, stroll him, (not to mention, use the restroom, cook, clean, etc.). Besides, it's not fair to seemingly ignore a baby even if it is for his own good.

So, I've been searching for seizure tracking resources. There are all kinds of spreadsheets and programs. One that I thought would be particularly useful is called SeizureTracker.com. Seizure Tracker is a free online program. You can print reports out from it and there is even a mobile version that works well on my iPhone (if AT&T's EDGE network isn't acting up). Furthermore, multiple parties (such as Mom and Dad) can be logged on to the same account thereby automatically syncing the seizure log! Seizure Tracker is fantastic if you've got at least a minute or two between seizures.

Unfortunately for Bertrand, Seizure Tracker proved too cumbersome in the handling of rapid succession seizures. The online nature of the program resulted in seconds wasted waiting for the page to refresh and the inability to log seizures when there was no internet connection (damn you, EDGE!). Also, for our purposes, it was too much of a good thing. There was no option to hide unnecessary values such as "Mood" or "Possible Triggers", which while I'll agree are important, can't be filled out while the next seizure is already occurring.

Simply having a downloadable, offline app of the program which syncs with the online version (for when the network is down) would be a huge improvement. Integrating the app with the iPhone's timer or the computer's built-in clock would also aide in working with rapid fire seizures. And, while I know it asking much of a free program, the ability to hide fields such as "Mood" and "Possible Triggers" would be helpful. However, if you have a child with a more traditional seizure disorder, these aspects may not be as vital, so Seizure Tracker will work great.

So, how am I going to solve Bertrand's seizure tracking issue? I've decided to track his seizures for one hour every day and extrapolate from it. That hour will be from 2PM - 3PM. This time is exactly in the middle of both Keppra doses, so the medication level in his blood should be fairly representative. This is also after his lunch and before his snack, so it should be a good time to observe Bertrand au natural. Using shorthand I'll log his seizures in a notebook, and adjust my logging system as needed. By tracking just this one hour a day we hope to see the effects of the ketogenic diet, and if we're successful with the diet, we can graduate to using Seizure Tracker!

Happy Halloween!

Wow! Halloween on a Saturday night is quite the animal! We gave out 75 treat bags and then a bucket of loose candy from 6:30PM to 7:50PM. Candied out, we had to call it quits before 8PM! Last year I over-bought candy and this year I under-bought. Here are some pictures of Bertrand (the world's very first King Bee) celebrating Halloween! :)

Bertrand tells Mama she needs a new costume!

Bertrand playing with his best friend, Kevin. :)

A Halloween miracle! Bertrand allows Mama and Dada to enjoy a dinner with friends!

Bertrand trick-or-treats at our neighbor's house! Afraid of Bertrand's tricks (possibly involving a stinger), Mr. Tom quickly hands over the treats! ;)

The Good Wizard, Bertrand's friend Daniel, also receives treats from Mr. Tom.

Two majestic and fierce creatures, the King Bee and the Queen Lobster (B's good friend Veronica), confront one another!

The King Bee gets ready to depart from his friends, the Wizard and the Lobster (not shown).

Bertrand's candy haul doubled in size from last year! Two houses, two pieces of candy!

Knee News

Going in to my orthopaedic follow-up appointment, my knee felt great! I was hoping the knee pain was all in my head or at worst I'd be facing a torn meniscus. I was wrong. The MRI of my right knee showed cartilage damage and fissures. I am facing a knee replacement. At only 28 years old, I was shocked--but I could clearly see what the doctor saw on the MRI. At the rate that knee surgery is progressing, Dr. Aoki's advice is to avoid him for as long as possible. (Google says that replacing the cartilage with special polymers, rather than using cadaver cartilage, is coming online!)

According to Dr. Aoki, I have to "get as much mileage out of that knee as possible." I need to cut out high impact activities, but I have virtually none. I can go to physical therapy or just do patellofemoral exercises at home. I need to strengthen the muscles in my leg to help take some load off the cartilege via gliding eliptical machine or bicycle. For most people, losing weight would be an easy option, but I am already underweight. I can continue to take daily antiinflamatory medication like Aleve.

I am a bit depressed over the news. I'll start to do the exercises and look into buying a bike. I never thought about using the first floor bedroom for myself, but I guess that will have to become a possibility. What gets me most upset about this is, that about going to the doctor, Matt was right! ;)

Orthopaedic Braces

Today, Bertrand's physical therapist at Shriners, Cindy, suggested that we get Bertrand some leg braces. It is Cindy's hope that the braces will be able to restrict/calm the movement in Bertrand's feet thereby freeing up his concentration so he can focus on walking--rather than keeping his feet steady. (More than for physical benefit, I see this as Bertrand's attempt to stay abreast of his fashion maven friend, little Miss Hannah!)

In other news, we were late to Shriners for the first time today. The staff was shocked, but still in their staff meeting. (Basically we just didn't have to wait as long as we usually do.) Why were we late, you ask? As you can see from the picture below, we have our first real snow! The picture was taken this morning and it is coming down even harder now. It looks more like Christmas than Halloween! It is definitely time to look for a 4-wheel drive car.

A Good Day

Flu Shot
Done! Bertrand's requirements for hospitalization in November are now fulfilled! But, the poor nurse vaccinating Bertrand experienced my special-needs-mommy-warped sense of humor.

• nurse: "Due to the seasonal flu vaccine shortage, we only have vaccines with Thimerosal available. Is that alright?"
• me: "That's the mercury, right?"
• nurse: "Yes."
• me: "Hahaha! He already has autism and seizures. Mercury is the *least* of his worries. Go to town."

Allgrove Syndrome
Pending. They said to try back in another week. The test is supposed to take from 6-8 weeks, and is very rare, so I guess we'll get results back closer to 8 weeks. At least from a customer service perspective, GeneDx is the best genetic testing lab I've dealt with. In the future, if we ever have to do prenatal testing, I want it done through them.

Epilepsy Conference
Attending! November 14th the Epilepsy Association of Utah Presents: Educational Conference 2009. Admission is free. It will be at East High School (840 South 1300 East, Salt Lake City, UT 84102) from 9 am - 1 pm. Registration begins at 8:00 am.

Topics will include:

• Basics of Epilepsy
• How to participate in the IEP team
• Women and Epilepsy
• Handling caregivers stress - Q & A Session
• Dravet and Febrile Research - New answers
• Disability Laws how do they affect me?
• And Much More

Autism Conference
Attending! November 18th and 19th the Carmen B. Pingree Center Presents: Parent Conference Fall 2009. Cost is $25 an individual or $30 per couple. It will be at the Carmen B. Pingree Center (780 South Guardsman Way, Salt Lake City, UT 84108) from 8:30 am - 3 pm. Registration begins at 8:00 am.

Matthew has to teach on November 19th (the only day I want to attend if Bertrand is out of the hospital), so my fabulous friend Lynn offered to babysit so I could attend! Thanks, Lynn!

Sessions I will attend include:

• SpecialCare: Budgeting for everyday needs, as well as, long term financial security.
  
• Understanding Individual Education Plans (IEPs): How and why schools use them and how to obtain one for your child.
  
• Information and advice on enrolling your child in special education services with the Salt Lake City School District.
  

Speech Therapy
Successful! At 45 minutes this was Bertrand's longest session ever! Bertrand can usually only make 20-30 minutes before his frustration becomes insurmountable. Today he displayed his ever-increasing attention span and his improved motor control. I am so proud of my son!

Home Refinance
Done! I still don't quite believe it, but we finally signed our refinance papers today. It only took 10 months, 6 loan officers, countless phone calls and emails, not to mention a few tears of anger/frustration on my part. But, it's done! All of that effort was worth the $400-500 extra we'll save each month! It'll all happily go to KetoCal. :) It still amazes me that we own a home with a yard for so little more than what we paid for our tiny apartment with a gravel patch in Atlanta.

Today has been a good day. :)

Bertrand's New Bedroom

Bertrand loves his new bedroom! As you can see from the messy floor in the top picture, he plays in it a LOT. Many people who love him made this room possible! He's such a spoiled little guy--in a good way. :)

B's favorite amenities, as compared to his old nursery, are: (1) a working radiator, (2) fewer windows with new blackout shades (for his light sensitivity), and (3) an inherited queen-sized, antique bed which is great for crawling practice!

And what has become of Bertrand's old nursery? It's now Mama's new sewing/craft room! Everyone is happier with the new arrangement, but Daddy most of all. This winter, by not running the nursery space heater, our electric bill will be cut in half!

Wii Sports Resort with Bertrand

The past few weeks have been a lot of fun. I'd tried playing the Wii with Bertrand months ago, but he wasn't interested. After he went on Keppra, I tried again, and this time, he's showed a lot more interest.

Bertrand's favorite game is Wii Sports Resort.

Wii Sports Resort includes an adapter that increases the motion sensitivity of the controller, to the point that when you play the sword-fighting game, the on-screen character mimics every movement exactly. It's clear to us that Bertrand can associate the motion of the controller with the on-screen movement.







In fact, if we put him in front the TV, he makes little scoots forward toward the screen, trying to touch the characters inside.

Bertrand isn't coordinated enough to hold the wiimote, but he likes being a part of the game-playing process, and it can keep him entertained for up to a half an hour at a time. (That's an eternity for Bertrand's attention span.)

It will be a lot of fun trying out new games with him over time. :)

End in sight for flu shot odyssey?

Et tu, CostCo? Today, CostCo failed me. I feel like this marks the passing of my innocence or something. We were not able to get a pediatric seasonal flu vaccine at CostCo--although I was able to get the seasonal flu vaccine. Bertrand acted possessed the entire time there, so we kept getting dirty looks. (B was just tired and, as a result, a little extra seizurey since he'd worked hard at physical therapy before being wisked away, and thereby missing his morning nap, in our desperation to get him his flu shot.) Luckily, I derive some pleasure in staying visibly calm and ignoring the ignorant. :-P

However, in reality, I was anything but calm. I was panicked that I'd have to drive to South Jordan or further to find the vaccine for Bertrand. Or worse, we wouldn't get the vaccine in time, and Bertrand's diet initiation would be postponed until December! (Of course, Bertrand just fell into a coma-like sleep while being strapped in to his carseat--he wasn't worried at all.) I decided to call Bertrand's pediatrician's office again, but this time leave a message for Dr. Samson-Fang instead of dealing with her office scheduling staff (who were all unmoved by our plight last time). Bertrand is now getting the shot first thing this Monday morning!

I've been so traumatized by this flu shot odyssey that such a conclusion sounds too good to be true. I won't believe it until after Bertrand is screaming with the Bugs Bunny bandaid strapped to his chunky little thigh.