This little guy, just 7 years old...well, turning 8 in May, is having a really tough time. He had surgery in November to resolve the chronic reflux he was having. Over the course of the summer and fall, he was getting sicker and sicker. He was irritable. He was vomiting and regurgitating multiple times an hour and nothing we tried was helping. Surgery seemed like the only option. Of course, I was aware that surgery is not without risk and not without potential complications. It was not an easy decision but I did decide to go ahead with it because it did seem to be the best option.
Since his surgery on November 4 but probably more since Christmas, he has begun losing weight. He has lost about 5-6 lbs. When your starting weight is 54 lbs, this is very significant. And when people begin to notice and make comments about it, it is significant. He also began falling asleep every time we were in the car. He began falling asleep in school. I noticed his appetite was severely diminished and he was often sick after eating and would need to rest for a while after eating.
After trying to work on it myself, I finally realized it was a bigger problem then I could handle and probably a bigger problem than I was even aware of. So, I got him in to the doctor last week. He had some blood work done at that time as well and it shows that he is beginning to show signs of malnutrition.
So, for the next month, I am making a very deliberate and concerted effort to increase his caloric intake in any way I can. The doctor wants him to drink two supplemental shakes a day and to take his Prevacid again. In one month, we will go back in and see how he is doing and if he will need more tests.
What I suspect, now that I have begun to do some research on my own is that he has something called Dumping Syndrome in which his stomach, because of the surgery, is now emptying too fast into his intestines and thus nutrients are not being absorbed because they don't have the time to sit in the stomach and get broken down further. He seems to have the symptoms of the fatigue and stomach pain after eating, the weight loss and malnutrition.
The treatment is exactly what we are doing now and it may be a long road to recovery for him. He is going to have to learn to eat differently. I am going to have to learn to feed him differently. The other children will have to learn that he will get snacks and things at different times and will get offered things that they will not. It is going to be something that affects all of us.
I have been talking with the school psychologist and the school nurse. We are developing a 504 plan which is to put some things in place that will allow us to help him recover. He can have his Ensure in class. He likes that he has a "desk refrigerator" as he calls it and he has some yummy enriched cereal bars and snack bars at school. I am so grateful to the school for how they have just jumped right in to help me out and to help him.
I did not have that experience with some of the other schools I have worked with. I had a difficult time working with a principal when BB was being diagnosed with ADHD and we were trying out different medications to figure out which one was going to work best for him. She labeled him a sociopath. He was 6 years old. I tried to explain that it was the medication and that it was blunting his affect and personality and this was not him. But she saw him in this troublemaker category and refused to see him any other way. I felt that she labeled me as well. I was in my last year of nursing school and frantically trying to balance classwork, clinicals, 4 children and a part-time job and then a child with a learning disability. I was at my wits end but I think she saw me as witless and pathetic. That was how she treated me; patronizing me and asserting her power and authority.
Contrast that experience with what I am experiencing now and I am completely blown away by the care and concern I am receiving for each one of my boys. It is very humbling.
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