Thursday, November 4, 2010

Weight gain

On a rainy afternoon, we headed downtown to Children's. An afternoon of lab work and the keto clinic.

Upon arrival, the parking lot was full. We were directed to park in the taxi/bus drop off. Unloaded and headed into the hospital.

Go to the lab.
The lab tech for Children's recognized Brayden and remembered that he was a difficult stick (the last blood work was with her and did not go smoothly). She did not even try this time and immediately got the head honcho to come get Brayden's blood work.

Next stop the keto clinic.
A few things to do at the clinic. First the dreaded weigh in...and no surprise Brayden has lost weight. Next, meet with the neurologist heading up the keto clinic. Finally talk with the nutritionist.

How did things go?
Brayden's seizure control is great. The best it has ever been.
Brayden's ketones and blood sugar are not where they need to be.
Brayden's weight is slowing falling off the growth chart.

Brayden has to gain weight otherwise, he may be pulled off the keto diet. We do not want him off the diet, it has been life changing for his seizure control. We are tweaking his food (a formula mixture of Elecare, Ross Carb-free, Microlipids, NanoVM and Water) to get in ALL of the calories at a flowrate his body can tolerate.

We have been trying to increase the amount of formula for his intake per day but the increase has been causing him to vomit more frequently.

Don't be fooled by his chunky cheeks, he is really a skinny little guy.


Wherever HE Leads We'll Go said...

So happy to hear about the seizure control. That is great news. Sorry to hear that he is still losing weight. So frustrating! Praying you are able to find a good balance of calories and volume that he can handle. Emily has chubby cheeks too, but is a long skinny girl!

kirstenpetree said...

I'm wondering..what is his weight? Layne is 21 lbs and just a little younger that's why I ask.