Sunday, May 31, 2009
Saturday, May 30, 2009
Ambrose finally got his hearing aids. It was quite a production. We had to bring him to the audiology department as they needed to use some equipment that is not portable to adjust his hearing aids while he was wearing them. It was quite a production as there is no O2 in any of the rooms there and the PICU generally does not like to send there patients out of the unit. I appreciate them letting us do this as we have been anxiously awaiting getting them and it will eliminate one of the many trips back to the hospital (which is a little over an hour from our home.) for follow up appointments. It is hard to say if they are helping him. It will take a while for him to get used to them. He was having quite bit of feedback in his left ear and it was agitating him. He was rubbing his ear against thing to knock it out. They are both in now and not bothering him.
Thursday, May 28, 2009
Wednesday, May 27, 2009
Tuesday, May 26, 2009
Monday, May 25, 2009
Sunday, May 24, 2009
I'm pleased to report that Brosie is doing well with the trial periods off of pressure support and he is sounding great! Today he will have 3 3 hr. periods off pressure support. He seems fine with it. I am thrilled that he is sounding so good but am growing impatient. When he no longer needs pressure support he will still need to be weaned off CPAP. Amazingly his IV is still working. This is day 6. A record.
Saturday, May 23, 2009
Thursday, May 21, 2009
Wednesday, May 20, 2009
Tuesday, May 19, 2009
Monday, May 18, 2009
Wednesday, May 13, 2009
Monday, May 11, 2009
Sunday, May 10, 2009
Friday, May 8, 2009
Thursday, May 7, 2009
Wednesday, May 6, 2009
Tuesday, May 5, 2009
Well, Little Brosie is doing very well if I do say so myself. He is now spending 4 hours on and 4 hours off CPAP and is tolerating it pretty well. He is also tolerating his new diet and his urine is starting to show some ketones, evidence that his is starting to become ketotic. Yeah! The attending just stopped in and said maybe he can go home this weekend (at the earliest) if he keeps doing so well.
Monday, May 4, 2009
The ketogenic diet is a high fat, adequate protein, low carbohydrate diet, primarily used to treat difficult-to-control (refractory) epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fat rather than carbohydrate. Normally, the carbohydrates in food are converted into glucose, which is then transported around the body and is particularly important in fuelling the brain. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. When the body produces ketone bodies—a state known as ketosis—this has an anticonvulsant effect.
The diet has just enough protein for body growth and repair, and sufficient calories to maintain the correct weight for age and height. The "classic" ketogenic diet contains a 4:1 ratio by weight of fat to combined protein and carbohydrate.
Developed in the 1920s, the ketogenic diet's popularity waned with the introduction of effective anticonvulsant drugs. In the mid 1990s the Hollywood producer Jim Abrahams, whose son's severe epilepsy was effectively controlled by the diet, created the Charlie Foundation to promote it. Publicity included an appearance on NBC's Dateline programme and …First Do No Harm (1997), a TV movie starring Meryl Streep. The foundation sponsored a multicentre research study and the results, which were published in 1996, marked the beginning of renewed scientific interest in the diet. The potential use of the diet as a treatment for medical conditions other than epilepsy is, as of 2008, still at the research stage.
In 2008, a randomised controlled trial showed a clear benefit for treating refractory epilepsy in children. This added weight to conclusions drawn from the many earlier uncontrolled trials of the ketogenic diet's efficacy and safety, which already provided sufficient evidence to recommend clinical use. In children with refractory epilepsy, the ketogenic diet is more likely to be effective than trying an alternative anticonvulsant drug. There is some evidence that adults with epilepsy may benefit from the diet, and that a less strict regime, such as a modifiedAtkins, could be effective.[1
The diet is now available in a
canned formula called Ketocal. I learned how to prepare it today and
he had his first feeding this afternoon. They will be checking
his blood sugar a few times over the next 24 hours and will be
fasting him overnight. We have to check the specific gravity
and ketones in his urine frequently. This is something
we will have to do at home too. They have to change some of
his meds because they may contain carbohydrates. Even
one gram of carbs could throw off the whole balance. They say
about 1/3 of childtlen have a greater than 90% reduction in
seizures with half of this # becoming seizure free. Another
1/3 have a 50% reduction. And 1/3 discontinue the diet due to
it's ineffectiveness or difficulty. Some people see results in the
first few days, some take 6 weeks.
Wish us luck!