I am writing this post with a heavy heart, a large sigh of prayer and an attempt to control my crazy mom inner voice that wants to freak out.
Brayden is still not gaining weight.
Those results came back and Brayden is still not absorbing enough.
We did not change the ketogenic diet immediately because Brayden hwas sick with strep and then we went out of town.
Now we are back, Brayden still has not gained any weight. We changed the recipe for the ketogenic diet, still planning to wean him off; increasing the carbs and decreasing the fat (the fat is harder to absorb).
Brayden is struggling with malnutrition and I am getting concerned that it is getting serious. A little over a week ago, Brayden started losing lots of hair...hair all over his bed covers, the car seat, his chairs. Then his skin is peeling. His is so thin (despite the look of his cheeks), bones protruding and causing discomfort. All tell tale signs of malnutrition. The past year of his troubling sleeping and misery all could have been because of starving.
So I started to panic about the hair loss, skin peeling and seizures. I put calls into the doctors.
1. Ketogenic team - Neurologist and Nutritionist who consult with Brayden's primary Neurologist. They said to continue the course and wean off the diet, paying close attention to changes in seizure activity
2. GI doctor - increasing the pancreatic enzymes and ordered bloodwork to check the pancreatic levels
3. Pediatrician - who helps me consolidated and interpret all of the information coming from the different doctors and test. Order bloodwork to test his thyroid, a possible cause for the weight loss.
Brayden was a champ getting his blood taken (I call and request certain people, so we minimize the sticking).
Brayden will continue weaning off the diet, praying that will help...
Oh, it makes me terribly sad to see his hair all over the place. Is he really starving and he cannot tell us? How is this compromising his health, comfort, etc.? Brayden has always had such thick hair. I joke that God gave him such thick hair to cover up his tiny head (from microcephaly) and balance out his super chubby cheeks. I constantly run my fingers through his hair, it is just as comforting for me as it is for him...