Carter's still been having frequent stomach aches. We saw his GI recently and he thinks that Carter may have an overgrowth of bacteria in his small intestine causing his pain. He is 'at risk' for this due to the surgery he had at birth and resulting short bowel syndrome. He had this problem about 3 years ago but that time he didn't have pain, just unexplained fevers.. We are trying the same treatment we did then. 1 week of Flagyl 3x a day, 2 weeks probiotics followed by a week off and then the same cycle one more time. Hopefully this will resolve his pain issue. If not then we need to decide how much the pain is interfering with his day to day life and if it's severe enough that we need to do an endoscopy and really see inside. It's so hard to say exactly how much the stomach pain effects him because he has a lot of muscle pain throughout the day also. So hard to see him in pain so often. It's just not fair and has been rough on all of us.
Since starting on growth hormone back when he was 2 years old we've had a mainly unexentful Endocrine journey. That is beginning to change.. About 2 years ago his IGF-1 level starting running high, we lowered his growth hormone dosage in an attempt to control it but it didn't help. When we saw his Endocrinologist in January, he had only grow a little over 1/2 and inch in almost a year but gained 10 pounds. We decided to go ahead and increase his GH dose since it was effecting his growth and not helping the IGF-1 levels. Hopefully he will start growing again, crazy to see how fast he slowed down and went from being about the same size as his peers in the beginning of kindergarten to the smallest in the class now at the end of first. The nutritionist at Cincinnati children's will review his 3-day food log and see if his weight gain is dietary. I don't think he's been eating more the past year then he did before; but we're looking forward to input. If his diet is okay then Dr. Wong wants to evaluate him for insulin resistance. It can develop as a result of the steroids he takes.. We also found out that high IGF-1 is common in boys on steroids and GH so we are less worried about that. There are studies beginning on IGF-1 as a possible treatment for Duchenne, I personally feel (and some doctors have said they agree) that the high IGF-1 has helped Carter. He still has great strength and has maintained in that regard over the past 2 years although he is getting fatigued easier now.
We saw Cardiology and Allergy/Pulmonary a few months ago, all is good in both departments. No changes in his heart or lungs yet. We will be re-testing his food allergy levels in his next blood draw. Keeping our fingers crossed we will see a decrease in his levels for milk. It's been a few years since we've seen where his blood levels are at.
Today we had his IEP meeting and discussed what he will need next school year. He will be using a scooter daily at school starting next year, we will do some kind of assembly for his classmates to talk about muscular dystrophy and general defferences/compassion/etc.. He had a problem with kids laughing at him when he was bringing his scooter this year and is very hesitant to take it again although he knows its necessary. He will also will be getting a more supportive chair with armrests and a foot rest to keep his posture better during the school day. He gets uncomfortable now and is always up and down in his seat. Next year we will also begin pushing typing over writing in class. We will meet again with his adaptive PE teacher, principal, nurse and new teacher before school starts next year to go over everthing again and make sure we have all the right tools in place for him to continue to be successful in school. He's very advanced academically and we want to keep school as a positive thing for him.
We are getting closer to the release of Saving Our Sons One Story at a Time, please view the link on the right to pre-order your copy!! I will have copies to sell in person as well once it's released. =)
I'm sure I left out a lot from my update, I really need to write more frequently!
<3
