Parents/Patients demanding investigations

**canoehead, BSN, RN** · Feb 27, 2011

After so many years in nursing there has been not one time...not one...when a parent has said to me "There's something wrong, I know something's wrong, but I don't know what," that they haven't been right. Every year or so, when I worked pediatrics, someone would hit the call bell and say that, I recommend we all listen when it happens.

My sister went through six weeks of having her 3yo diagnosed with constipation and/or gastro. After the first week sis started to say they were missing something. That was like a heart patient saying they have to take a crap, in my ears. (You all know what I mean.) She asked for and got an ultrasound and they found a big neuroblastoma, displacing organs and wrapped around her daughter's aorta. Mother instincts are spot on when something big is wrong with their child.

lckrn2pa · Feb 27, 2011

There are parents that do push hard for exams that are not warranted and dangerous. There are studies linking increased risk of fatal CA based on CT use. An article last year in PA professional cited a FDA investigation into brain perfusion scans done on 206 pts at Cedars-Sinai where pts were over exposed and many developed symptoms consistent radiation exposure such as hair loss and red skin. This was determined by FDA that over time excessive exposure could lead to increased CA risk. To put in perspective a CT head is equivalent to 400 chest xrays and CT chest, abdomen are 400 each with CT abdomen + Pelvis being 800 and is usually the test ordered for any abdominal complaints. Something that I see coming in the future and has been discussed is getting informed consent signed by pts and parents of pts after being educated on risk/benefits of any CT done. The increased risk of CA in children is related to where they are in the growth cycle with younger children being at ihigher risk.

I believe the risk/benefits must be weighed and when a pt will obviously benefit from the exam then it is warranted. I do not believe in the practice of doing so because the pt/parent demands it when it is not medically relevant. I've been a nurse for a very long time, some 19yrs, and I remember when parents demanded a shot or a pill, an antibiotic for viral syndromes. Back then we gave antibiotics like it was candy, also back then MSRA was relatively unheard of but look at it now. Just think what we will be talking about in another 20yrs, maybe how so many kids died of cancer because doctors abused the use of CT's. Who knows.

LACA, BSN, LPN, RN · Feb 28, 2011

This is something that REALLY gets to me....and for good reason.

A little over three years ago, my son had a hemangioma (sp?) on his eye/bridge of his nose that showed up shortly after birth. We were sent to the ONLY pediatric eye specialist in our area. I went round and round with this doctor that something was not right. He finally agreed to do a CT w/o dye and said that the hemangioma was fine and there was no danger to my baby from it. The hemangioma kept growing and getting worse. I continued to literally bug this doctor day in and day out to do a CT scan WITH dye and see if he could tell anything else. I was convinced that something was not right, but he would not listen. On that Monday, when my son was 11 weeks old, my dad and my husband took the baby back to this doctor because the area had gotten even worse. The doctor's exact words to my husband:

"Tell your wife to stop obsessing over this. She's wasting my time and hers and it's getting ridiculous." My husband was FURIOUS. I made plans that evening to take our baby to a different specialist, three hours away. I was working on getting an appointment for the next week. That Saturday night, I went to get my son out of the car seat and he had stopped breathing. His nose was pouring blood and his face and corificeat were covered in blood. Once he got to the hospital, they pulled numerous blood clots out of his lungs and stomach. He was on life support for 5 days. When he was admitted to the hospital, I immediately noticed that the area on his eye was flat. Which it had not been in over 2 months. The doctor came in to the PICU to do an assessment on my son and noted in his notes that the area on his eye was the exact same as it had been on Monday when my husband brought him into the office. Which was a flat out lie. After 5 days on life support, my 11 week old son died. And you will NEVER EVER convince me that he died for any reason other than the hemangioma ruptured and he choked on the blood.

I will NEVER let any doctor tell me to not fight for my child's health. Ever. A mother's intuition is stronger than any medicine or medical opinion you can think of. Trust me, I found out the hard way.

Airidis · Feb 28, 2011

This is something that REALLY gets to me....and for good reason.
A little over three years ago, my son had a hemangioma (sp?) on his eye/bridge of his nose that showed up shortly after birth. We were sent to the ONLY pediatric eye specialist in our area. I went round and round with this doctor that something was not right. He finally agreed to do a CT w/o dye and said that the hemangioma was fine and there was no danger to my baby from it. The hemangioma kept growing and getting worse. I continued to literally bug this doctor day in and day out to do a CT scan WITH dye and see if he could tell anything else. I was convinced that something was not right, but he would not listen. On that Monday, when my son was 11 weeks old, my dad and my husband took the baby back to this doctor because the area had gotten even worse. The doctor's exact words to my husband:
"Tell your wife to stop obsessing over this. She's wasting my time and hers and it's getting ridiculous." My husband was FURIOUS. I made plans that evening to take our baby to a different specialist, three hours away. I was working on getting an appointment for the next week. That Saturday night, I went to get my son out of the car seat and he had stopped breathing. His nose was pouring blood and his face and corificeat were covered in blood. Once he got to the hospital, they pulled numerous blood clots out of his lungs and stomach. He was on life support for 5 days. When he was admitted to the hospital, I immediately noticed that the area on his eye was flat. Which it had not been in over 2 months. The doctor came in to the PICU to do an assessment on my son and noted in his notes that the area on his eye was the exact same as it had been on Monday when my husband brought him into the office. Which was a flat out lie. After 5 days on life support, my 11 week old son died. And you will NEVER EVER convince me that he died for any reason other than the hemangioma ruptured and he choked on the blood.
I will NEVER let any doctor tell me to not fight for my child's health. Ever. A mother's intuition is stronger than any medicine or medical opinion you can think of. Trust me, I found out the hard way.

Sorry about your loss

MassagetoRN · Feb 28, 2011

LACA,

I am so sorry for your loss. Thank you for sharing your story. As a new nurse, this definately sticks with me and strengthens my belief to advocate for my patients (which includes the parent's and their intuition).

LACA, BSN, LPN, RN · Mar 1, 2011

After the loss of our sons, our daughter (now 2!) was born with a hemangioma on her back, near her shoulder blade. I went around and around and around with her doctor about having it removed, until he finally sat me down, listened to me, and talked to me for TWO HOURS about my fears. He assured me that it was absolutely no danger and that she was fine and that he wouldn't remove it even if it was his own child. She still has it, its about the size of a nickel. It gets larger, then smaller, then larger again. They've told us it should be gone by kindergarten, so we will just have to wait and see!

Esme12, ASN, BSN, RN · Mar 1, 2011

After the loss of our sons, our daughter (now 2!) was born with a hemangioma on her back, near her shoulder blade. I went around and around and around with her doctor about having it removed, until he finally sat me down, listened to me, and talked to me for TWO HOURS about my fears. He assured me that it was absolutely no danger and that she was fine and that he wouldn't remove it even if it was his own child. She still has it, its about the size of a nickel. It gets larger, then smaller, then larger again. They've told us it should be gone by kindergarten, so we will just have to wait and see!

What a horror show!!!! I hope you sued the pants off that JERK!!!!!! I am so sorry for what you had to endure. I am so sorry for your loss and you mention "sons" NO ONE should suffer the loss of one child let alone 2. YOu and your family are in my prayers. Thank you for sharing your story...that had to have been very difficult for you...:redbeathe

LACA, BSN, LPN, RN · Mar 2, 2011

What a horror show!!!! I hope you sued the pants off that JERK!!!!!! I am so sorry for what you had to endure. I am so sorry for your loss and you mention "sons" NO ONE should suffer the loss of one child let alone 2. YOu and your family are in my prayers. Thank you for sharing your story...that had to have been very difficult for you...:redbeathe

I would never have been able to actually prove that my son's cause of death was directly related to the hemangioma OR to the doctor's neglect, so I didn't really pursue it.

Yes, "sons" was correct. Before we lost our 11 week old, we had a stillbirth with our oldest son at 23 weeks. I've had 3 children, but my little girl is the only living child.

ZippyGBR, BSN, RN · Mar 2, 2011

I've learned from Ped's that a) parents are the patients just as much as the kid and b) the parents are the expert on their child, not us! Go parents!!
And Tablefor9, I am sorry for your experience and pray blessings on your family.

which can be a real problem when a child with a life long condition turns 16 / 18 and starts the transition to 'Adult' care and parents no long have the right to know the minutiae of care..

Esme12, ASN, BSN, RN · Mar 3, 2011

]I would never have been able to actually prove that my son's cause of death was directly related to the hemangioma OR to the doctor's neglect so I didn't really pursue it. [/b']
Yes, "sons" was correct. Before we lost our 11 week old, we had a stillbirth with our oldest son at 23 weeks. I've had 3 children, but my little girl is the only living child.

Then I will pray for that.......poor excuse for protoplasm to have nightmares everynight of their miserable life. The true judgment will come to them someday........if you get my drift. My hugs and prayers for you and your family...xo

Airidis · Mar 3, 2011

Even as an adult I have my mother as my emergency contact she still knows me Best

FLmomof5 · Mar 3, 2011

I could write a book on how I knew something was wrong and was ignored....only to pay out of pocket for a specialist and got proven RIGHT!

To the OP, we don't have socialized medicine here (yet). We can, and do, demand diagnostic procedures at times and we can get them. You can see by so many of these posts that it isn't a good idea to ignore a patient's family...since they do know the patient's normal better than you or a doctor.

I watched TV yesterday. On one medical show....6 yo child is sick. Turns out to meningitis. Nearly dies, but recovers. Six months later, same initiating symptoms and OMG! Child has it again!!!! So very rare. Well 3 yrs pass and suddenly, the symptoms are back. MD says, "It's just a cold/flu. Treat with Tylenol at home." Dad demands a CSF check since DD says neck hurts when attempting to put chin to chest. MD insists that NO child has ever had Meningitis 3 times in 3 years. Dad insists! CSF fluid is checked. Yep! Dad was RIGHT!

A specialist who treated child before starts really checking into things. Child had a mild sledding accident just before 1st bout. Turns out that that accident left a minute crack in the nasal fossa. This was allowing nasal infections to enter the cranial area!

I have heard that in government run medical areas that tests may not be run unless "justified". (Not sure) Anyway, I remember recently getting a call from the Cardiologist at the base hospital. He didn't understand *why* and echocardiogram was ordered on me. (I am youngish, asymptomatic, BP 90/58, resting P 48-55.) I *asked* to have it done. [My father has CHF. My older sister and younger brother were recently diagnosed with cardiomyopathy. Looked clearly genetic to their cardiologists!] Anyway....my EF is 45! I may have ended up like my dad...undiagnosed CM that is asymptomatic and ending up a CHF instead.

In the US, docs ordinarily try to play it safe and run the extra tests. It does drive up the cost of medical care. It is unnecessary in some cases, true. But, when a life is saved....one thanks God for that freedom.