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General Parenting
Advice for well-child on Tuesday
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<blockquote data-quote="slsh" data-source="post: 402877" data-attributes="member: 8"><p>Has he ever had a brain MRI? Again, my bias kicking in, LOL, but if changes in white matter are a common finding in kids with- heart problems, that might be helpful. I've found it to be useful to know the anatomy of my son's brain, because it's cut through a lot of pointless extra testing over the years when new docs flip out over his grossly abnormal scans. </p><p></p><p>How has your son's physical/motor development been? </p><p></p><p>I think some docs forget they're dealing with mere humans. Boo received an antibiotic in NICU that can cause deafness. We followed up with- a developmental pediatrician shortly after he was discharged the first time, and I requested hearing tests to make sure he wasn't deaf. This guy actually had the nerve to look at my gnawed fingernails, literally patted my hand, and told me I had enough to worry about - he wasn't ordering the hearing test. That was the first doctor I fired, LOL. I may have been a wreck, but I had a *valid* concern. Your doctor may have thought CF would be the least of your concerns, but he forgot to look at the bigger picture.</p><p></p><p>I've found that sometimes I have to be the voice of reason when it comes to my kids' treatment. I had one ER doctor who wanted to do yet another brain MRI to rule out a tumor when Boo had another seizure. A brain tumor??? I actually laughed at him. Poor guy was a little shocked, but I explained that given Boo's history, his documented brain injury, and the fact that there were absolutely no changes in him aside from this breakthrough seizure, I thought an MRI was not indicated, and we'd just wait for his neuro to check in before undertaking any more scans. </p><p></p><p>Bottom line, it's been a delicate balance. A doctor has to address my concerns, no matter how off the wall they may seem. I have to be open to the information that is shared and at times hand over the reins to the experts, but at the same time I have to be my kids' advocate and make sure that they are receiving the best care and are treated with- respect. I don't hesitate to fire a doctor who won't work with- me.</p></blockquote><p></p>
[QUOTE="slsh, post: 402877, member: 8"] Has he ever had a brain MRI? Again, my bias kicking in, LOL, but if changes in white matter are a common finding in kids with- heart problems, that might be helpful. I've found it to be useful to know the anatomy of my son's brain, because it's cut through a lot of pointless extra testing over the years when new docs flip out over his grossly abnormal scans. How has your son's physical/motor development been? I think some docs forget they're dealing with mere humans. Boo received an antibiotic in NICU that can cause deafness. We followed up with- a developmental pediatrician shortly after he was discharged the first time, and I requested hearing tests to make sure he wasn't deaf. This guy actually had the nerve to look at my gnawed fingernails, literally patted my hand, and told me I had enough to worry about - he wasn't ordering the hearing test. That was the first doctor I fired, LOL. I may have been a wreck, but I had a *valid* concern. Your doctor may have thought CF would be the least of your concerns, but he forgot to look at the bigger picture. I've found that sometimes I have to be the voice of reason when it comes to my kids' treatment. I had one ER doctor who wanted to do yet another brain MRI to rule out a tumor when Boo had another seizure. A brain tumor??? I actually laughed at him. Poor guy was a little shocked, but I explained that given Boo's history, his documented brain injury, and the fact that there were absolutely no changes in him aside from this breakthrough seizure, I thought an MRI was not indicated, and we'd just wait for his neuro to check in before undertaking any more scans. Bottom line, it's been a delicate balance. A doctor has to address my concerns, no matter how off the wall they may seem. I have to be open to the information that is shared and at times hand over the reins to the experts, but at the same time I have to be my kids' advocate and make sure that they are receiving the best care and are treated with- respect. I don't hesitate to fire a doctor who won't work with- me. [/QUOTE]
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