Lunch Time

Both kids are "feeding" themselves. :)

Update on Health, Therapy, Diet, & Family

Bertrand & Victoria enjoy snuggling on the couch with Abuelito.

Health:

Bertrand, Victoria and Mama have gotten their first colds of the season. Both kids are staying active and in high spirits in spite of the illness. In Victoria's case, this is her first cold ever and she has handled it like a champ. In Bertrand's case, this is his first real cold since restarting preschool 4 months ago AND he seems to be getting over it as quickly as Victoria and me. This is remarkable! His immune system appears to be doing better than ever.

Therapy:

As mentioned before, we jumped at the opportunity for Bertrand to attend another intensive therapy session at Now I Can. The 2 week session starts on Monday! Because of Daddy's travel, Mama's volunteer commitments and Victoria's cold, Bertrand's Nana is coming to the rescue. She will be taking Bertrand to Now I Can, so I don't lose (more of?) my mind.

Diet:

Since starting vitamin therapy, Bertrand has improved substantially. However, I was concerned about the high quantity of fat soluble vitamins (A & E in particular) that he was receiving. On October 31, his geneticist did me the favor of running levels for vitamins A & E. Bertrand's results were in the low normal range!

Vitamin A 0.36 (normal range: 0.20 - 0.50)

Vitamin E 6.0 (normal range: 5.5 - 9.0)

Why was I excited about this? First of all, this meant that Bertrand wasn't in danger of vitamin toxicity. Secondly, this meant that Bertrand had been extremely vitamin deficient, if after 3 months of vitamin mega-dosing he was just barely in the normal range! We were justified in our concerns.

Since then, Bertrand's vitamin & mineral supplements have been adjusted with the guidance of a naturopath. Bertrand continues to cry tears regularly, even to display emotion, which for us is a great sign!

One of the items which the naturopath brought up in Bertrand's initial examination was the possibility of dairy allergy or sensitivity. So on a lark, I bought some soy milk for Bertrand a week ago. There was noticeable improvement in his breathing and seizure level the next day. And, since then he has been doing very well despite his cold. We're still waiting on the blood test result for dairy allergy which the naturopath ordered, but regardless I will be more insistent when speaking with Bertrand's pediatrician about a referral to an allergist.

Family:

The past few weeks have really underscored how lucky we are to have family close by. Nana, Papa, Titi Saby and Uncle Steve have become vital to the functioning of our family! We loved having Abuelito and Uncle Dan out here for thanksgiving, even if the stay was too short. :) We're already looking forward to seeing them again, and more uncles and aunts, soon!

Standing in front of a gingerbread "house" at the Grand America.

Keeping Life "Interesting"

Pink eye or scratched eye?

Warning: This post contains Too Much Information (TMI).

Bertrand woke up late from his nap and had lunch. During lunch I noticed that one of his eyes was pink! He'd also scratched his nose, so I was inclined to believe the eye had also been scratched. However, being Friday, if it was pink eye, I'd have an easier time getting a prescription called in today than tomorrow. I changed his very messy diaper, making a mental note to cut-out Bertrand's miralax, and called his pediatrician's office.

As I was hanging up the phone with the nurse, I heard Bertrand retching. I turned around to find him covered in vomit! Poor baby! As I was cleaning him up to get him in the bath, he went through several more cycles of diarrhea and another of vomit. I managed to get him cleaned-up along with his room's carpet, bean bag, and myself. At this point he'd lost a lot of fluid and didn't want to take anything--food or drink. He'd vomitted everything since 10am--it was almost 4pm.

Matthew and Sabrina are out-of-town, and Bertrand's nana is with with his great-grandma in the ER. We like to limit family members in the ER to one at a time. Bertrand is at risk for ketoacidosis and hypoglycemia because of the ketogenic diet and dehydration thanks to the fluid loss. As we've seen, he can go downhill fast. And, once he is in the hospital, Bertrand likes to find reasons to stay there. It was vital to get fluids in him.

So, I called in the "big guns": our neighbor, Nurse Cathy. She is an angel. She left work early to watch Bertrand, and confirm his pink eye. I was able to pick up his prescription & sick baby supplies (pedialyte, pediasure, boogie wipes, etc.) in record time. Once the sweet ambrosia that is Pediasure--well, a KetoCal/Pediasure/water solution--touched Bertrand's lips, he FINALLY drank. And, it stayed down. His color started to come back. An hour later he was ready to drink more, and he was able to take his medications.

I can't help but feel like I dodged a bullet. I even went so far as to continue with Bertrand's zonegran wean (stepping him down to the last 25mg) and there still haven't been additional seizures. He is making at MOST trace ketones. This isn't how I wanted to wean the diet again--under threat of hospitalization--but now I am not sure I want to raise the ratio if he is doing fine. We'll hold steady the next few days and see what happens.

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.

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

Occupational Therapy: Session 3/31/09

Today Bertrand met with Annie Miller, Occupational Therapist, and Maggie Chaney, Nutrition Consultant. Meeting with Annie, on top of being fun, always generates lots of great concepts to try with Bertrand.

1. Bertrand was issued a cut-out-cup for cup drinking. (Didn't go so well tonight, but we'll try again tomorrow with yogurt smoothie.)
2. We will continue Bertrand's body brushing program with added muscle compressions.
3. Bertrand will be encouraged to touch himself with a particular emphasis on his mouth/face area.
4. We'll provide mouthing opportunities with soaked cloths and wrist rattles.
5. Because the thin consistency of juice may be turning him off, we'll try thicker fruit nectar.
6. If we can accomplish it, V8 Splash would also be a good source of for vegetables.
7. Generic cheerios soften more quickly so, if soaked, they may succeed where brand name Cheerios have failed. :)
8. Because of Bertrand's largely milk/formula diet, he does not get as much sodium or potassium as he should. We should speak to Dr. Samson-Fang about adding "Lite Salt" to his baby food.

Of all the recommendations, Matthew's favorite is hydrotherapy. Since I am a firm shower person, I can't fathom putting Bertrand through his paces in a bath tub much less a hot tub. But, if Matt is willing to both shell-out for the hot tub (tax deductible prescribed medical expense) and work with Bertrand in it, I will support them. And, I'll videotape it! ;)

Eating at Chez Bertrand

Bertrand has become an increasingly picky eater the past few months. He is a far cry from the little 3 month old who would eat anything you put in front of him. In an effort to whet his appetite, I've been trying a variety of foods on Bertrand. While yogurt is still king, we had moderate success with the two items below.

This frittata was remarkably successful with Bertrand. I've been on a frittata kick thanks to the amazing frittata pan I got for x-mas. I made it from left over veggies in my fridge: squash, new potatoes, cucumber, green onions, parsley, swiss cheese, and, of course, egg. I thought that this would be my first flop, due to the hodgepodge nature of the ingredients--it wasn't. Bertrand loved in particular the egg, cucumber chunks and squash. Go figure.

Bertrand hated this "chili" the first day, but loved it the next. While I was making adult chili, I set aside a handful of kidney beans, and once our chili was done, I added a tablespoon full of our chili to the beans and threw it all in the food processor. It's worth mentioning that the adult chili base wasn't your traditional chili. There was lean ground beef (seasoned with adobo), roma tomatoes, green bell pepper, red & yellow onion, red pepper flakes, garlic, fresh cilantro, ground black pepper and sea salt. The result was a nuanced and flavorful, but mild, chili. Matt agreed with Bertrand that it was even better the next day. :)

Happy Little Trees... Yummy Little Food

Bertrand likes to play with his pictures.

In our ongoing efforts to expand Bertrand's palate, we've delved into the past to find techniques that work. When I was little, my mother would draw pictures to get me to eat. Turns out, it works for Bertrand too! Shapes, colors, funny faces... Bertrand enjoys the distraction from the peas. Therefore, he eats! I hope it keeps working. :)

Bertrand, Le Gourmand

The conversion of minestrone into full, happy baby.

Today we found the trick to getting around Bertrand's picky eating: feed him cuisine. Turns out little Bertrand is a gourmand. Zwieback toast: no, no! Pyrenes Onetik Poivre Vert (a French/Basque cheese with green peppercorns): oui, oui! Homemade zuppa di minestrone Milanese: sì, sì!

Maybe baby food is too bland? He seems to love spices. And, no, he has not shown allergy symptoms to anything so far! The only symptom he is showing is increased appetite for solid food. :)

Thanks to Titi Mimi (pictured above) for the great cooking and inspiration!

Big Boy Food!

"Mmm... That tastes interesting."

Today, Bertrand munched happily on a graham cracker that I held for him, and ate 'tender chicken and stars' for dinner without too much drama. :) Our boy is growing up!