Bertrand has fully entered the fine tuning stage of the ketogenic diet. We are pretty sure that he is medically safe going into week 4. He is no longer sick or dehydrated and his glucose test from yesterday was great at 71 (normal range 60-180 but for the diet >40 is considered good).
The first few weeks on the diet brought a big reduction in the number of his startles (myoclonus) and the elimination of his drop (atonic) seizures. Then over the past few days his startles started increasing, the drops returned with a vengence, and I was heartsick watching my baby turn back into a staring little vegetable.
What changed? Nothing except Bertrand got well and his appetite returned. For the first time since he'd started the diet, Bertrand was getting his full fluid and calorie allotment. While I am quite happy that Bertrand is getting his fluids (his urine before was a little too yellow in my opinion), I think his dietitian may have overestimated Bertrand's calorie requirement. I've been participating in a ketogenic diet support group online, and there are bigger, heavier, more active four-year olds on the diet with lower calorie allowances than Bertrand!
I've also been keeping a very detailed log of Bertrand's daily intake and activities. All of his drops seizures happen within 15 minutes of drinking his KetoCal shake. And yesterday was the straw that broke the camel's back. Bertrand had 5 drops and 12 startles! This was as bad as the first day on the diet! (How quickly I got spoiled. I would've killed for seizure numbers like that once upon a time and now they are too high. I guess that's the miracle of the ketogenic diet!)
Today I went renegade and dropped Bertrand's calories to 950--almost 200 calories lower than what his dietitian prescribed. While his ketones still read as only moderate, he had only 1 startle and 1 drop all day! And, they both took place in the morning! For myoclonus (startles), this is the best we've seen since starting the diet! He was also more alert! My greatest hope is that we get Bertrand's very first myoclonus and atonic free day tomorrow--for his birthday!!!
PS - Turns out that my cold which won't go away is strep throat. I started a course of antibiotics today and am already starting to feel more human! Woo hoo! :)
December 8, 2009
December 7, 2009
Driving Under the Influence
As Bertrand and I made our way out of Primary Children's Medical Center today, we were almost hit by a car. This wasn't a major occurrence and I should probably be writing instead about how our observation at the Carmen B. Pingree Center for Autism went (well), how Bertrand's blood draw went (awful) or how many drops he has so far today (unfortunately, two). But, no. The driver of the little burgundy honda takes precedence today because her tear stained face belied the fact that she was driving, like I have so many times, under the influence of grief.
There have been countless times, as Bertrand and I left one of his doctors appointments, when I have almost hit someone, run stop signs, red lights and missed turns--all in the same 3 minute drive home. Once I was so bad, I pulled over at my husband's office (conveniently located between our house and the hospital) because I was simply not safe to drive. I've since thought that doctors, much like bartenders, should be obligated to ask, "do you need a cab?" after giving the news that a child is dying because of a metabolic/neurodegenerative/genetic condition, cancer, etc. Or even non-fatal news like a child will never see, walk or learn.
Speaking from experience, grief generated from news like that tears your soul out. You're a shell of a human behind a wheel. You wouldn't notice if the sky turned green and pigs were flying--much less a pedestrian trying to cross the road. I'd feel safer in a car driven by someone who drank a 6 pack of beer than in a car driven by a parent ravaged by grief--it is that debilitating. For those of you out there who don't understand this comparison, I am happy for you and hope you never do. For those of you reading this blog who do understand this comparison maybe you'll share in my guilt that I should've gotten that woman a hug and a cab.
There have been countless times, as Bertrand and I left one of his doctors appointments, when I have almost hit someone, run stop signs, red lights and missed turns--all in the same 3 minute drive home. Once I was so bad, I pulled over at my husband's office (conveniently located between our house and the hospital) because I was simply not safe to drive. I've since thought that doctors, much like bartenders, should be obligated to ask, "do you need a cab?" after giving the news that a child is dying because of a metabolic/neurodegenerative/genetic condition, cancer, etc. Or even non-fatal news like a child will never see, walk or learn.
Speaking from experience, grief generated from news like that tears your soul out. You're a shell of a human behind a wheel. You wouldn't notice if the sky turned green and pigs were flying--much less a pedestrian trying to cross the road. I'd feel safer in a car driven by someone who drank a 6 pack of beer than in a car driven by a parent ravaged by grief--it is that debilitating. For those of you out there who don't understand this comparison, I am happy for you and hope you never do. For those of you reading this blog who do understand this comparison maybe you'll share in my guilt that I should've gotten that woman a hug and a cab.
December 5, 2009
A History of Bertrand
A long overdue summary of the life and times of Bertrand Thomas Might. Much like the man himself, this is a work in progress. :)
Conceived four years into marriage while his mother and father were finishing stressful graduate degrees, the pregnancy with Bertrand was surprisingly smooth. Being cautious, his parents opted for all the additional testing available to healthy, unrelated, 20-somethings, including the first trimester screen and a third trimester ultrasound. His mother gained 28 pounds. Bertrand was the textbook fetus--he measured exactly 50th percentile every time and constant hiccups early in utero indicated healthy lungs.
Bertrand was born via vaginal delivery on December 9, 2007. His due date was December 10th, so he was fashionably early. Bertrand’s third trimester ultrasound indicated that he would be born weighing about 8.5 pounds and 20 inches long. His parents were shocked that he weighed 5 pounds 12 ounces instead. Bertrand’s height was 19.5 inches. The first two days went relatively well, but due to hemorrhaging on the part of his mother and jaundice on his, Bertrand entered the neonatal intensive care unit for two additional days.
The first two weeks at home with Bertrand were paradise, but that paradise crumbled as Bertrand began to deviate from the norm. He began to suffer from around the clock “colic”, he would never spit up, he didn’t cry tears, his teeth started coming in at about two months. Bertrand’s moro (startle) reflex was impossible to trigger intentionally, but he would startle with no observable cause. And then there were the infant tremors that, while assured to be normal by medical professionals, were increasing in frequency. Finally, at his 6-month well-baby check-up, Bertrand’s pediatrician recommended that he see a developmental specialist.
Because of the family’s July 2008 move to Salt Lake City, a mess with referrals and problems with medical system in general, Bertrand’s developmental specialist appointment didn’t happen until Bertrand was 8.5 months old. In August 2008, Bertrand was tentatively diagnosed with “movement disorder”, hence the name of this blog. This “diagnosis” was more to fill in the blank on intake papers than an accurate description of his condition. It was also at about this time that Bertrand started losing what few milestones he’d accomplished and what few skills he’d attained, such as the use of his hands and rolling over. No one could harbor the hope that Bertrand was somehow still normal, or worse--that something was not terribly, horribly wrong. After that very first appointment with the developmental pediatrician Bertrand’s medical odyssey commenced.
Bertrand had over 10 tentative diagnoses in the year after that. Only the first few were non-fatal. The rest were all neurodegenerative and terminal. Each time a diagnosis was ruled out, the next one was hanging over Bertrand like the sword of Damocles--until the doctors ran out of deadly diseases with which to label him. Bertrand has flummoxed the medical establishment. While uncertainty still hangs over his head, so does HOPE. His medical team has switched from hunting for a diagnosis to treating what symptoms they can. They have started with Bertrand’s epilepsy, with autism to follow.
Conceived four years into marriage while his mother and father were finishing stressful graduate degrees, the pregnancy with Bertrand was surprisingly smooth. Being cautious, his parents opted for all the additional testing available to healthy, unrelated, 20-somethings, including the first trimester screen and a third trimester ultrasound. His mother gained 28 pounds. Bertrand was the textbook fetus--he measured exactly 50th percentile every time and constant hiccups early in utero indicated healthy lungs.
Bertrand was born via vaginal delivery on December 9, 2007. His due date was December 10th, so he was fashionably early. Bertrand’s third trimester ultrasound indicated that he would be born weighing about 8.5 pounds and 20 inches long. His parents were shocked that he weighed 5 pounds 12 ounces instead. Bertrand’s height was 19.5 inches. The first two days went relatively well, but due to hemorrhaging on the part of his mother and jaundice on his, Bertrand entered the neonatal intensive care unit for two additional days.
The first two weeks at home with Bertrand were paradise, but that paradise crumbled as Bertrand began to deviate from the norm. He began to suffer from around the clock “colic”, he would never spit up, he didn’t cry tears, his teeth started coming in at about two months. Bertrand’s moro (startle) reflex was impossible to trigger intentionally, but he would startle with no observable cause. And then there were the infant tremors that, while assured to be normal by medical professionals, were increasing in frequency. Finally, at his 6-month well-baby check-up, Bertrand’s pediatrician recommended that he see a developmental specialist.
Because of the family’s July 2008 move to Salt Lake City, a mess with referrals and problems with medical system in general, Bertrand’s developmental specialist appointment didn’t happen until Bertrand was 8.5 months old. In August 2008, Bertrand was tentatively diagnosed with “movement disorder”, hence the name of this blog. This “diagnosis” was more to fill in the blank on intake papers than an accurate description of his condition. It was also at about this time that Bertrand started losing what few milestones he’d accomplished and what few skills he’d attained, such as the use of his hands and rolling over. No one could harbor the hope that Bertrand was somehow still normal, or worse--that something was not terribly, horribly wrong. After that very first appointment with the developmental pediatrician Bertrand’s medical odyssey commenced.
Bertrand had over 10 tentative diagnoses in the year after that. Only the first few were non-fatal. The rest were all neurodegenerative and terminal. Each time a diagnosis was ruled out, the next one was hanging over Bertrand like the sword of Damocles--until the doctors ran out of deadly diseases with which to label him. Bertrand has flummoxed the medical establishment. While uncertainty still hangs over his head, so does HOPE. His medical team has switched from hunting for a diagnosis to treating what symptoms they can. They have started with Bertrand’s epilepsy, with autism to follow.
December 4, 2009
Family medical leave granted
I've been granted family medical leave for next Spring, so that I can be the father and the husband I need to be while we see Bertrand through the critical first six months of the ketogenic diet.
I resisted applying for leave as long as I could, because there was a part of me that clung to the hope that a diagnosis and an instant cure would somehow materialize for Bertrand. I do have hope that the ketogenic diet is going to make a big difference for Bertrand, but it's clear it's not going to happen overnight. It's going to take months of measurements, calculations and patience to see its full effect.
We also need to push Bertrand harder than ever in therapy to make sure he gets the most out of his emerging abilities. Cristina is an amazing mother, but she's been sacrificing her own health and welfare for Bertrand, so I need to step in and provide that push. Now that I have leave, I can.
I feel very lucky to work at the University of Utah. My colleagues (and their families), the department and the administration have offered unflinching support to me and my family throughout Bertrand's ordeal. To every one of you reading this blog, THANK YOU!
I resisted applying for leave as long as I could, because there was a part of me that clung to the hope that a diagnosis and an instant cure would somehow materialize for Bertrand. I do have hope that the ketogenic diet is going to make a big difference for Bertrand, but it's clear it's not going to happen overnight. It's going to take months of measurements, calculations and patience to see its full effect.
We also need to push Bertrand harder than ever in therapy to make sure he gets the most out of his emerging abilities. Cristina is an amazing mother, but she's been sacrificing her own health and welfare for Bertrand, so I need to step in and provide that push. Now that I have leave, I can.
I feel very lucky to work at the University of Utah. My colleagues (and their families), the department and the administration have offered unflinching support to me and my family throughout Bertrand's ordeal. To every one of you reading this blog, THANK YOU!
December 3, 2009
Video of Bertrand on week 3 of the ketogenic diet
If I could pick one phrase to describe today, it would probably be "face palm". The sad part is that so many things went right today! But, as my dad always says, "I can only be as happy as my most unhappy daughter"--or, as in my case, son. Well, the video (just for you Elizabeth!) can speak for itself, or you can read the good, the bad and the troubleshooting below.
THE GOOD
- Bertrand had much better fluid intake today!
- I found the CARBmaster yogurt for him at a grocery store!
- Bertrand did two 1 hour stander sessions for 2 hours total! A first!
- In the stander he was in proper position, resting on his forearms!
- Bertrand was in a very sweet, happy mood all day. :)
- People remarked at how well he was tracking!
- And, he looked, smiled and interacted with them for the first time!
- He had his first drop (atonic seizure) in over a week.
- He had at least 12 startles (myoclonic seizures)--3X more than yesterday.
- He still didn't completely fulfill his fluid requirement.
- While this could've just been a bad day, I doubt it.
- We added TWO new things today: Vitamin D and grape Powerade Zero.
- His seizures started after the D-laced breakfast, well before the Powerade.
- But, to be on the safe side, we'll be removing both tomorrow.
- If that helps, then I'll try slowly adding back the Vitamin D first.
- But, if that doesn't help, we'll remove the carnatine supplement again.
- We'll work from there.
December 2, 2009
A Bad High School Chemistry Problem
This is a recent post from a ketogenic diet support group mailing list. I wonder who could've written it?
My son is only 23 months-old. He is at the 50th percentile for weight (12.5kg) and about the 40th for height (33.5in). We started the diet at 3:1 ratio, a little over 2 weeks ago. The dietitian refused to give me her calculations (personality clash), but he supposed to have 4 meals of 40.7g KetoCal 3:1, or 162.8g KetoCal (1137 Calories) per day.
Based on the past two weeks and my prior calculations, I think this is too high. Using "The Ketogenic Diet" book, my calculations for fluids matched the dietitian's at 1150 ml per day. However, I got a RDA of 1125 Calories (160.9g KetoCal per day)--85% of that RDA would be 995 Calories (136.6g KetoCal per day).
My son is struggling to drink his 1150ml of fluids, I think, because he is too full. He likes the KetoCal, so that isn't the problem. (Before the KD he hated juice, water or anything not milk.) His average fluid intake has been 856.9ml per day. Therefore, this puts his KetoCal intake at 137.1g per day or 85.2% of the RDA I calculated.
If those Calories seem fine according to the Johns Hopkins book, why am I bothering you? Because his dietitian has said she will lower his ketogenic ratio from 3:1 to 2.5:1 if he is not getting the fluids in! BUT WE ARE SEEING RESULTS AT 3:1! From over 30 drops per day down to no drops the past week! And only 4 myoclonus today, with far less absences and partial complex seizures! If anything, the ratio goes up!
Furthermore, his glucose, etc. are fine. His CO2 was a bit off, indicating some mild dehydration, and I am worried about that. Should I test diluting the KetoCal further, doing the fewer Calories (which he has been doing anyway)? I am tired of fighting with my son, especially when I think he is right.
None of this would be an issue if we could have an open dialogue with our dietitian. But, our dietitian dislikes us, her job, or something. We even heard the nurses talking about what "a bitch" the dietitian was being to us (or possibly in general). I think she may have threatened lowering the ratio just to keep me from emailing her. I've only emailed her 3 times in 2 months--not excessive!
*Sigh.* Nobody claimed the ketogenic diet would be easy. :)
My son is only 23 months-old. He is at the 50th percentile for weight (12.5kg) and about the 40th for height (33.5in). We started the diet at 3:1 ratio, a little over 2 weeks ago. The dietitian refused to give me her calculations (personality clash), but he supposed to have 4 meals of 40.7g KetoCal 3:1, or 162.8g KetoCal (1137 Calories) per day.
Based on the past two weeks and my prior calculations, I think this is too high. Using "The Ketogenic Diet" book, my calculations for fluids matched the dietitian's at 1150 ml per day. However, I got a RDA of 1125 Calories (160.9g KetoCal per day)--85% of that RDA would be 995 Calories (136.6g KetoCal per day).
My son is struggling to drink his 1150ml of fluids, I think, because he is too full. He likes the KetoCal, so that isn't the problem. (Before the KD he hated juice, water or anything not milk.) His average fluid intake has been 856.9ml per day. Therefore, this puts his KetoCal intake at 137.1g per day or 85.2% of the RDA I calculated.
If those Calories seem fine according to the Johns Hopkins book, why am I bothering you? Because his dietitian has said she will lower his ketogenic ratio from 3:1 to 2.5:1 if he is not getting the fluids in! BUT WE ARE SEEING RESULTS AT 3:1! From over 30 drops per day down to no drops the past week! And only 4 myoclonus today, with far less absences and partial complex seizures! If anything, the ratio goes up!
Furthermore, his glucose, etc. are fine. His CO2 was a bit off, indicating some mild dehydration, and I am worried about that. Should I test diluting the KetoCal further, doing the fewer Calories (which he has been doing anyway)? I am tired of fighting with my son, especially when I think he is right.
None of this would be an issue if we could have an open dialogue with our dietitian. But, our dietitian dislikes us, her job, or something. We even heard the nurses talking about what "a bitch" the dietitian was being to us (or possibly in general). I think she may have threatened lowering the ratio just to keep me from emailing her. I've only emailed her 3 times in 2 months--not excessive!
*Sigh.* Nobody claimed the ketogenic diet would be easy. :)
December 1, 2009
Back home and sick--but happy.
We really enjoyed visiting family in Kentucky, but it still feels great to be back at home. This quick post will be a shotgun one--full of bullets. (Thanks, Fawn!)
- Bertrand has been sick for the past two weeks. He is still congested, but getting better.
- The KD was working and he had started using his hands enough to pick up germs. ;)
- Today he was back to resembling KD day 3. Just 5 startles today. No drops in ~a week.
- He had roseola, a virus which results in fever, hives and SURPRISE convulsions. :-P
- Bertrand lost 0.6 pounds since last Tuesday due to the sickness and lack of appetite.
- He is now sleeping a lot: 2 hours in the AM, 3.5 hours in the PM. Carnatine may help.
- We'll be restarting the carnatine supplement tomorrow since it didn't cause the hives.
- B is due for blood work this week, but I am afraid it'll still show signs of dehydration.
- We're struggling to meet the requirement of 1150 mL of fluid because B doesn't drink.
- The ketogenic diet, for Bertrand, is going to take 6-12 months to see full effect.
- Matthew is putting in for family leave to help achieve full results sooner rather later.
- If B can achieve seizure control, there is a small chance B can attain normal intelligence!
- Holiday decor, birthday party, sub for santa, are on hold because now I am sick!
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