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.

OMG! Bertrand Sat Up!

Just right now, Bertrand was laying on the couch next to me and got to sitting completely on his own!!! Luckily, Matthew was sitting on the other side of the couch so he got to witness this too! We are so PROUD of our boy!!! YAY!!!

Flu Shots, Knee Update and More

Flu Shot Odyssey
Before being admitted to the hospital in November to start the diet, Bertrand needs his flu shots: seasonal and H1N1. This morning we were able to procure the first of his H1N1 shots (kids under age ten need two doses, a month apart, for full immunity) from the Salt Lake City Department for Public Health. Unfortunately, they were out of seasonal flu vaccines. Even more unfortunately, so is every clinic and pharmacy in the valley (excusez-moi, "intermountain region")! BUT, hallelujah! we have a savior! (and no one who knows me should be surprised...) CostCo has come to the rescue! Tomorrow, October 22 from 10AM to 2PM is the very last day they will be offering the seasonal flu vaccine! (Apparently there are shortages of the seasonal vaccine because all production has been shifted to H1N1.) After Bertrand's physical therapy session, we will fly to the CostCo and hopefully get needlified before they too run out!

Get Well
Speaking of the flu, my dear friend Karen and her two adorable little boys are now sick! :( We're keeping them in our thoughts and hearts. This is the same wonderful, darling Karen who has been there for us every time life has gotten rough the past few months. (Just last week she was bringing over meals when my knee was out!) We hope they get well soon.

My Knee
Today I went to see orthopaedic surgeon, Dr. Steve Aoki. As I was being funneled through the admitting process at the University of Utah Orthopaedic Center (awesome facility, BTW), the receptionist, billing person, x-ray technician, and nurse, upon hearing that I was going to see Dr. Aoki all said, "Oh! He's the best one!" "He's the doctor I go to!" "He's the doctor I take my daughter to!" "I loooove Dr. Aoki!" So, I am pretty impressed before I even see the guy. Boy was I surprised when a human being, no god-like resemblance at all, walked into the exam room. ;) Anyway, Dr. Aoki seems nice. The x-rays, as expected, show no damage. Also as expected, he thinks I likely have a torn meniscus and ordered the MRI. My follow-up appointment to go over the MRI is next Wednesday.

Big Boy Room
Tonight is the big night! Bertrand is graduating from his crib in the nursery to the queen sized bed in his "Big Boy" bedroom! We finally got and assembled his extra-long, super-fancy, bed rails! Tomorrow morning I'll take pictures to share of my big boy in the bed! :)

Moving Forward: Ketogenic Diet

Eliza Hamilton, the ketogenic dietitian, got back to me today! (She'd been sick all last week.) We'll be moving forward with the ketogenic diet as soon as we can do a Monday admission to the hospital. It could be as early as next Monday! (She is checking.) All ketogenic diet admissions are required to be done on a Monday in case it takes the full 5 days to transition to the diet.

The chief determinant on if Bertrand can be admitted next week is if there is a "free bed". Unfortunately, all hospitals are facing flu season right now and it is shaping up to be a particularly bad one. Almost all the beds are full already. Since going on the ketogenic diet is considered "elective" basically everything else takes priority over Bertrand's admission.

Ideally, they would like for Bertrand to have both flu shots by the time he is admitted--since flu is easily caught at the hospital. However, everywhere I've called today for the flu vaccine is booked by a month or more, or they are completely out. I've left a message with Eliza about this.

At least, with a 3-5 day stay, there won't be any fasting involved. They'll just slowly ramp up his ratio of fats to carbs, giving his body time to adjust. Also, the one "required" purchase to start the diet is The Ketogenic Diet: A Treatment for Children and Others with Epilepsy: a book I have already bought! Except for the shots and waiting for the KetoCal prescription, we're ready to go!







* price includes shipping

	KetoCal	PediaSure
cans/case	6	24
oz/can	50	8
total oz/case	300	192
$/case	$164*	$48.99
$/oz	$0.55	$0.26

KetoCal costs roughly twice as much as PediaSure, what Bertrand drinks now. Insurance tends not to cover KetoCal unless it is being administered via feeding tube. In our case, there is a possibility that insurance would cover it since Bertrand's liver issues so drastically reduced our seizure medication options, but I am not sure it is worth the hassle to get it covered. If KetoCal helps reduce or STOP his seizures, it is worth way more than twice what PediaSure costs!

UPDATE: Unfortunately, next week the hospital will be full. Bertrand is now scheduled to start the ketogenic diet on Monday, November 16th.

Review: "Keto Kid"

Keto Kid: Helping Your Child Succeed on the Ketogenic Diet is by Deborah Snyder. It was one of the few ketogenic diet books still in print on Amazon.com. At only 160 pages, I accidentally finished it in about two hours last night. You'll find what I liked and didn't like about the book below. If I could do it over, I'd try finding it at the library or buy a used copy online instead. The parent of an older child with a more conventional seizure disorder may find this book helpful, but, as the author makes many assumptions which do not apply in Bertrand's situation, I did not.

What I did like:

• The appendix contained useful templates of notes for a variety of situations to involve and inform stakeholders in your child's situation (friends, neighbors, teachers, grandparents, etc.). These ranged from dealing with classroom parties to dealing with trick-or-treating.
• There is a section on ketogenic recipes which would really help with an older child, including a one that Matthew is looking forward to: cooking with bacon. :)
• The book brought up that you can't use processed foods. I hadn't heard of this before, but at least initially with the diet, everything must be made from scratch. Even Matthew's beloved "bacon" is actually sliced side pork from a butcher because it cannot be salted or smoked like the store bought variety.

What I did NOT like:

• Even though it was published fairly recently in 2007, a lot of the information in it, product information in particular, was a bit outdated. (At least it points you in the right direction and google can do the rest.)
• The book does not cover the ketogenic diet in babies or very young children (under age 5 years).
  
• There is no mention at all of KetoCal, which is a standard formula used on the ketogenic diet.
• There are no ketogenic baby food recipes in the book, but there are some that could be modified for baby.
• The book does not cover the ketogenic diet with substances other than food--toothpaste was the only exception. In very young children on the ketogenic diet, there are concerns with the carbs in soaps, wipes, lotions, etc., especially given the amount of carb those items contain relative to a young child's size and weight.
• Before reading the book, Matthew and I had discussed going on the Atkins diet in solidarity, even if Bertrand is completely unaware of our sacrifice. However, it is not be safe for pregnant women or people with other health issues to limit their carbs! So the author's repeated insistence and deriding of parents who do not assume at least part of the diet with their child was hurtful and potentially dangerous.

Annoyed...

I am annoyed with myself. It seems like my body always gives out when I need it the most. For the past month my right shoulder had been hurting, so I was taking motrin/advil/aleve 1-3 times a day. The pain FINALLY went away for the most part yesterday. So of course this morning I woke up with "crepitation" in my right knee. It feels and sounds crunchy--like I have gravel in it. It is locked at about a 170 degree angle. It hurts slightly, but is more annoying than painful since I can't walk right or move it.

How do I know it is "crepitation"? Bertrand's therapists over at Shriners Hospitals gave it a test drive. Regardess of the cause, they told me that I need to see an orthopedic doctor as soon as possible. (Because I have so much free time to see a doctor!) I'll be seeing orthopedic surgeon Steven Aoki next Wednesday. For once the MRI will be for me, not Bertrand. I just hope that my knee can be helped with exercise instead of surgery.

Carrying an adorable 30-pound weight on my right side almost all the time, everyday is probably not helping the situation. :)

Ketogenic Dietitian Follow-up

I just left a voicemail for Eliza Hamilton, the dietitian, since we had not yet heard from her. We want to start the ketogenic diet soon because we are severely limited in seizure medications because of Bertrand's liver problems. The medications most effective at treating his types of seizures have possible liver failure as a side effect for patients with no liver problems. Not cool.

Bertrand has hundreds of seizures per day. Even on the Keppra he has one every few minutes which, while an improvement from having a seizure every few seconds, are still a great impediment to learning and development. Also, the Keppra does not work at all on his startle or drop seizures, but at least possible liver failure is not a side effect!

We understand that it is not optimal to force his body to use fat instead of glucose to run it, but otherwise he won't be able to use his little body or learn anything at all. I want my son to have a chance to live his life fully. This is one of the tough choices that parents have to make.

So, we are going to give the ketogenic diet a try--at least for two months. Realistically, we have no other choice.

Bertrand's 100th claim!

We passed a milestone of another sort this morning: Bertrand's 100th medical insurance claim!

We once joked about building a mural out of Bertrand's medical ID anklet tags. We had no idea we could've actually done it.

The total insurance payout for Bertrand has been $100,857.83. Cristina will look up our share when taxes roll around.

We hope now that we've switched the emphasis from diagnosis to treatment that we'll be able to manage his medical costs better.

What's Next? A Three Wolf Shirt?

"I'm not cheating, I'm playing by my own rules."

Ketogenic Diet Update

I just heard back from Paula Peterson, with Primary Children's Medical Center Neurology Department. Paula is the nurse practitioner who would be working with Bertrand, along with Dr. Sakonju, to start the ketogenic diet. Bertrand would be the youngest patient to start the ketogenic diet at the University of Utah. As a result of his age, rather than the typical 2-3 day hospitalization to start the diet, his would be a 3-5 day hospitalization.

As I was explaining to my fabulous sisters who were staying with us this week, the ketogenic diet is basically a super strict Atkins diet. There are next to no carbohydrates allowed. Beyond his actual food intake of fat and protein, Bertrand wouldn't even be able to use normal baby wipes, shampoos, soaps, or medicines with any traces of carbs since it is believed they may be absorbed through the skin. And, you'd be amazed at what has carbs that you wouldn't expect!

As Evelyn's dad explains, "the theory is it [the ketogenic diet] puts your body into ketosis, which causes your body to produce ketones. The theory is that these ketones bind with amino acids in the brain when the brain begins using them for energy (in place of glucose), and... does something to the chemical makeup of the brain that reduces seizures in about 50% of people, with about 30% of people showing a 90% reduction or more."

Much like with Evelyn, it may actually be easier to start Bertrand on the diet now than to wait. Bertrand has sensory integration issues which make him a very picky eater; currently milk/formula/pediasure and yogurt comprise the bulk of his diet. Since he prefers to drink his food, using the KetoCal baby formula would make an easy transition. And, since he has yet to develop a taste for typical kid's foods like juice, mac & cheese, french fries, cookies, pizza, etc., by starting him on the diet now, he'll never miss or feel deprived of those foods.

To implement the diet at home, away from the hospital, we'll have to administer daily urine tests for ketone levels. (Just a little cotton pad in his diaper. No, I was not about to ask Bertrand to pee into a cup!) Also, all of his food and drink must be weighed on an electronic scale and recorded carefully in a jourmal. And, since everyone knows how much Bertrand loves getting his blood drawn, there will be more frequent blood tests. :-P

There are several concerns with going on the ketogenic diet: hypoglycemia, kidney stones and stunted growth. Because of Bertrand's age, growth is a primary concern. However, both Matthew and I have come to believe that short stature in exchange for developmental progress is a trade we are willing to make. After a few months, if his seizures are not diminished on the diet, we'll have to slowly work him back on to a normal diet. Rapidly reintroducing the carbs after being on the ketogenic diet can cause grand mal seizures in some cases.

Moving forward, we'll be starting our 3 day food diary tomorrow morning. We'll be working with Eliza Hamilton, a dietitian, on preparing for and implementing the ketogenic diet. I hope to be hearing from her and scheduling B's hospitalization soon! I also hope that she can help us manage Bertrand's triglycerides within the scope of the ketogenic diet. (Cholesterol is a factor which, if not reigned in, could torpedo Bertrand's permission for the ketogenic diet.)

ABNORMAL LAB RESULTS 10/12/2009
Triglycerides: 105 (30-100) High
VLDL: 21 (?-?) High
Calcium: 10.2 (8.7-9.9) High
Albumin: 4.1 (3.1-3.9) High
Alkaline Phosphate: 354 (145-320) High
ALT: 306 (5-45) High
AST: 172 (20-60) High
Hydroxyproline: 0 (6-50) Low

Fall Break Reading Material

I just bought the following books from Amazon:

1. "Seizures and Epilepsy in Childhood: A Guide (Johns Hopkins Press Health Book)", John M. Freeman MD; Paperback; $14.96
   
2. "The Ketogenic Diet: A Treatment for Children and Others with Epilepsy", M.D. John Freeman; Paperback; $13.04
   
3. "Keto Kid: Helping Your Child Succeed on the Ketogenic Diet", Deborah Snyder; Paperback; $11.53

Neurology Update

Bertrand's Keppra has been upped to 2.0 mL twice a day. Since he has tested negative for seizures sensitive to vitamin B, we won't be doing a B6 tablet such that is frequently used along with Keppra. It should take around 1 to 2 months to see the full results from medication. If he is getting too sleepy, we can try brand name Keppra over generic since it absorbs better.

We are waiting to see if B is approved to start the ketogenic diet. It would be easier for him since he still takes a bottle. If approved, B would have to fast for 24 hours and then be hospitalized for 2-3 days. Monday, after 12-hour fasting, Bertrand will be going in to get blood work run to see if he can be a candidate for the diet. However, his age alone (at Utah) may rule it out.

Lastly, I believe we will switch our neurologist. I cannot stomach further communication issues.

A Week Long Update

Medical

• We got a call back from the Carmen B. Pingree Center for Autism. They may have a paid slot open for Bertrand in their Spring 2010 session, staring February! We'll hear more in November.
  
• Bertrand will be following-up with his neurologist, Dr. Sakonju, this Thursday. We've crafted an action plan for Bertrand's treatment and we'd like her buy-in on it.
  
• Bertrand's Keppra prescription just ran out! We're used to getting a bit extra from our other pharmacy because they know how tough it is to give any meds to B. I am frantically trying to get it refilled now.
  

Family

• We just said goodbye to Bertrand's Nana and Papa Might. They spent a few weekends looking at possible Utah homes and installing new hardwood floors off our kitchen! Now Bertrand can zoom around with me once he learns how to use his KidWalk!
  
• Bertrand celebrated his Abuelita Gisela's and Titi Saby's new jobs yesterday. He gave them calls over Skype. He is very proud of both of them! :)
  
• We are preparing for a visit later this week from Bertrand's Aunt Beli and Titi Saby (my sisters). I am so excited, I can't wait! Neither can Bertrand!
  

Books

• Bertrand started trying to turn book pages again! He is less touch defensive and is more open to receiving help with his hands.
  
• Last night, I started reading to Bertrand and Matthew the english version of one of my childhood favorites: "The Little Prince." (I own it in english, spanish, french and russian.) We got through the first two pages. Boa constrictors, woo hoo!
  
• Finally, Bertrand got his own graphic novel: Logicomix! Well, Bertrand Russell that is. He is the first of our Bertrand's name sakes. Here is a review:

"This is an extraordinary graphic novel, wildly ambitious in daring to put into words and drawings the life and thought of one of the great philosophers of the last century, Bertrand Russell. Interwoven with breathtaking excursions into logic and mathematics, in language we can all understand, is the trajectory of Russell's personal life -- his parents and grandparents, his wives, his inner conflicts. The book is a rare intellectual and artistic achievement which will, I am sure, lead its readers to explore realms of knowledge they thought were forbidden to them."

- HOWARD ZINN, historian and author of A People's History of the United States