Andrew saw a third opinion neurologist today. I felt that we didn't get much of anything out of the previous two neurologists, and I was right. His PMR doc was also failing us, by telling me to "just use calming techniques" for my sons daily inconsolable crying fits. My pediatrician told me that she wanted a neurologists opinion before administering a medication to help calm him.
The neurologist reviewed my sons MRI images and said, "Your son has agenesis of the corpus callosum. This causes him to have a chemical imbalance in his brain, which causes meltdowns, and he tries to hurt himself right? By banging his head?" I said, "yes". He says, "no one has told you to medicate for this?" I say, " I was given calming techniques to use". He said, "calming techniques will not work with these types of kids, they need to be medicated. Does this happen every day?" I answer, "not only every day, but sometimes all day long". And then I want to cry, but I didn't, I just got teary-eyed and angry. Angry that we've had to put up with this for so long, but now we are finally getting help. He asked if I'd be willing to mess around with different dosages and possibly have to try different medications, and I agreed. I told him we are at the end of our rope.
I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Could we possibly communicate via private email. I am a special Ed teacher and I am looking for answers.
ReplyDeletecargirard@hotmail.com