Thursday, April 12, 2012
Keith and Iryna
Keith went to the GI specialist earlier this week. Keith has hypo-tonic cerebral palsy - which means low muscle tone. Keith's CP is mild, really only affecting his intestines/colon not being high tone enough to move his food through without help. He's on miralax 3x a day and he is still backed up. I thought I would check and see if there was something else wrong. He met with Dr Khubchandani once before and he ordered a barium enema (nothing wrong) and blood work(all came back fine). So he now is prescribing a chew-able table which will help the intestines work better. He said it shouldn't be a long-term solution, as the intestines would become dependent on the medication and not work on their own. I am hopeful that this will help him - no progress thus far.
In August 2010, I filled out paperwork to have Iryna screened by Dr Childers, a pediatric diagnostician in Jacksonville, FL. A year later, Iryna began the screening process. We went up to Jacksonville twice for her to be evaluated. Tuesday of this week - we drove up and got our results. At this point in the process, I began to wonder if it was even worth all the trouble, but I am happy to say that we learned a lot from Dr Childers. Iryna has a mild case of mental retardation. Basically, if the average person is driving at 100 miles down the road, Iryna is driving at 70 miles per hour. Iryna is mentally the age of 4 years old and I should treat her as a 4 year old. She does not have ADHD - in fact, there is nothing wrong with her attention span. Her hyperactivity is simply a part of her personality - all Iryna. Iryna struggles from anxiety and impulse control. Her current medication of vyvanse, according to Dr Childers, is enough to medicate a horse and he says it is sedating her. I don't see a sedative effect in Iryna, but I do know that she's not making much progress academically. He instructs us to give her a very small dosage of Prozac. We have the report and are currently in the process of seeing a new psychiatrist for Iryna, so hopefully we can get their opinion and begin making the change.
I have a hard time with the label "mentally retarded" and Tyler thinks it's because it carries a stigma for me. To me, she's just Iryna and a very sweet, bubbly, highly empathetic girl. Tyler and I feel very hopeful for Iryna. She has been blessed that she will one day marry and have children. I don't understand how all that will happen, but God knows his plan for Iryna and I will do my part in that plan. I know that many people who are slow still marry and have happy lives. Dr Childers did also say that most likely her mental retardation is hereditary. I don't know anything about her father and her mother drinks a lot, so I guess we won't be able to confirm that. Dr Childers also wants for us to have her seen by a genetics doctor. He thinks that her face suggests a syndrome, but he isn't qualified to know which one. He didn't confirm that she has FAS, although he wouldn't be surprised if she did. He also said that many people with FAS are very bright and that the mental retardation doesn't come from the FAS, which surprised me.
This afternoon, I am going to Orlando to see Dr Ramos - a pediatric cardiologist for Calvin and Silas. I will update when I have more information about their health.
Articulations by Jill Pierce at 12:21 PM