The Beginning of What Was to Come
December 04, 2013
Finally, my fiancé and I had a long talk because nothing was working. My son was still hyper, his eating was slowly getting better through my fiancée’s cooking, but was still not great. Cognitively, my son was not getting better. He was also still constipated. His eye contact was poor and his writing skills were still poor. Even though they have gotten better through therapy, his fine motor skills were still giving him trouble. His social skills were well below average as he had limited interaction with us and others.
We decided to go to a children’s hospital in a different state. This time, we got in to see a psychiatrist. Following an evaluation, she gave her diagnosis and we continued treatment. Her diagnosis was exactly the same as I had been told by previous doctors and therapists. But this doctor decided to change the medication because over the years the meds just stopped working, and he was still having the same symptoms and issues as before. Vyvanse was changed to Concerta because there was a pattern of Christian performing better on that family of drugs. We kept the Intuniv and Risperdal in place, but I told the doctor I was hearing about the side affects of Risperdal and wanted him off this medication because it was starting to scare me a little.
We came back every two months. The doctor wanted to run some blood work and an EKG because Christian was on medication. The blood work came back okay, but the EKG came back abnormal.The test said he had right ventricular hypertrophy, but the doctor didn’t believe it and ran the test again. Second time, it said the same thing. Now the doctor ordered a 24-hour Holter monitor test, which came back normal. The doctor then said that an echocardiogram was the only true way to find out if something is wrong with your heart. I thought back to when Christian was 6 ½ years old. The previous doctor who put him on meds had run these tests, but told me the results were normal. So I pulled a copy of those earlier results and took it to the current doctor. Those first test results literally said RVH in the upper right hand corner of the report. Furious, I wanted to know why the first doctor hadn’t ordered further testing like we were doing now.
So we did the echocardiogram and saw the cardiologist. That doctor came into the room and said that Christian displayed no right ventricular hypertrophy and his heart is perfectly fine BUT… “We did find something unexpected, a PDA (patent ductus arteriosus) and we will need to schedule you with a different cardiologist who specializes in that area.” We met with the surgeon, who told us that Christian’s vein didn’t close after birth, and he would need a non-invasive surgery. The doctor told us that the blood flow was taking a shortcut through this vein and going back through the left side of the heart. In the short term, there are no effects, but long term it could wear the lining down on that side of the heart and Christian could have a heart attack. Plus, the cardiologist could hear a bad murmur. I was so upset this wasn’t caught when Christian was 6 years old, but I am thankful that we decided to change doctors when we did or it would have never been found. Christian was 12 years old when he had a successful surgery in which they placed a coil into the vein to stop the blood flow from taking the shortcut.
We went back to our doctor and weaned my son off Risperdal. Christian was still very frustrated and when he gets like that, he tends to self-injure. He will hit and scratch his face, especially if he doesn’t get his way. It was so heartbreaking to see, and we tried a mood stabilizer called Seroquel. After a couple of months on that medication, it was a complete nightmare. I pulled him off of it and told the doctor it was a disaster. I didn’t want any more mood stabilizer/psych drugs. The doctor agreed and we left him only on the ADHD meds.