Pediatric CP patients

Editorial Team / Admin · Aug 23, 2005

Just a question, when you admit a child with Cerebral Palsy
do you find out what their ADL's are (or maximum abilities etc)
immediately? Have you ever had an experience (not just you, perhaps
someone else) where the child is "ignored" because of the CP?
I am only asking because of an experience my sister went through
with her child recently. No one asked for a history (except meds of
course) and though the parents tried to explain the history and what
they would need (diapers, moisture barrier etc) they nurses totally
ignored them. Each assessent (I was present for most) was a quick peek
under the covers and then asked the parents if they needed a meal
ticket. Only one doctor actually interacted with the child by playing
with the stuffed animals and holding a hand etc.
My biggest question is this, what can I tell my sister to do so that the
next time there is a good communication and bond between the nurse
and patient/family, what could she do to make it easier for her, her child and
for the nurses (mind you I think of the nurses though I am very upset
by the the total indifferene of 99 percent of the staff. One nurse was
very good with the child and I told my sister to make sure she is
mentioned in the satisfaction survey, in fact, she was excellent and made
up for the bad feelings all around to an extent.
Please help, I know you are the experts in pediatrics and could possibly
help out if this happens again. Sorry to ramble, just upset at the moment.
PS, just so you know, the parents handled things the best they could, she
is a nurse too. The other thing I forgot to mention is the child is a very
very sweet child, very affable. With pain it was a bit tough but nothing
unusual with CP or not, pain is pain.......Do parents of special needs children drive nurses crazy? Are they usually a pain in the ......? My sister got what
she needed eventually but you know how hard it is when you are emotional
and angry already........
Thank you so much in advance......
OjoRn.

I feel the need to apologize for the poor nursing assessments done in this facility. It is NOT a full assessment to "peek" under the sheets.

The nurses should get an entire history, including the psycho-social aspects, ADL's..........goodness......anything you can think of regarding this child.

The parent may have to volunteer the info, however, this should be the response AFTER the nurse queries the mom/dad. . .Not after the nurse appears finished and wants to leave the room. Parents may have to initiate the conversation regarding pain and comfort measures/pain meds, etc.

Some nurses are truly at a loss with this type of child. No excuse, however.

Again, I am sorry this happened to this child and his family. . . and you.

MissJoRN, RN · Aug 23, 2005

Our hospital has a looong intake sheet for all pedi patients that includes, in several places, all areas of development. ie- is the pt potty trained? days? nights? size diaper? catheterizations? foley? size? straight cath? other? Would all be included under the GU section. In fact the sheet even includes words the child uses to indicate need to void. OK, I skip that section in most older kids- I check potty trained and move on, but anytime I see any kind of developmental delay, physical disablity, or psych issue I get detailed! I want to know what we can expect from this kid while he's visiting us, I want to be able to pick up an behaviour or develpoment that isn't WNL for the kid, and to have a legal record of the child's abilities.

And then, of course, reassess the kid!!

I'm sorry, sound like your niece/nephew didn't get the care that a scared sweetie deserves!

cody25 · Aug 24, 2005

Just a question, when you admit a child with Cerebral Palsy
do you find out what their ADL's are (or maximum abilities etc)
immediately? Have you ever had an experience (not just you, perhaps
someone else) where the child is "ignored" because of the CP?
I am only asking because of an experience my sister went through
with her child recently. No one asked for a history (except meds of
course) and though the parents tried to explain the history and what
they would need (diapers, moisture barrier etc) they nurses totally
ignored them. Each assessent (I was present for most) was a quick peek
under the covers and then asked the parents if they needed a meal
ticket. Only one doctor actually interacted with the child by playing
with the stuffed animals and holding a hand etc.
My biggest question is this, what can I tell my sister to do so that the
next time there is a good communication and bond between the nurse
and patient/family, what could she do to make it easier for her, her child and
for the nurses (mind you I think of the nurses though I am very upset
by the the total indifferene of 99 percent of the staff. One nurse was
very good with the child and I told my sister to make sure she is
mentioned in the satisfaction survey, in fact, she was excellent and made
up for the bad feelings all around to an extent.
Please help, I know you are the experts in pediatrics and could possibly
help out if this happens again. Sorry to ramble, just upset at the moment.
PS, just so you know, the parents handled things the best they could, she
is a nurse too. The other thing I forgot to mention is the child is a very
very sweet child, very affable. With pain it was a bit tough but nothing
unusual with CP or not, pain is pain.......Do parents of special needs children drive nurses crazy? Are they usually a pain in the ......? My sister got what
she needed eventually but you know how hard it is when you are emotional
and angry already........
Thank you so much in advance......
OjoRn.

my son has cp and yes the nurses should assess ADLs.lazzzzzzzy*ss nursing. I dare a nurse to ignore my child,its not your sisters job to make sure the nurses have it easy,its there job to make it easier on your sister and the child.no we dont drive nurses crazy its there job to see every need of a patient.i mean they do get paid to NURSE!!!!!!!!!!!!!!!!!!!!!!!!!

OjoRn · Sep 9, 2005

I feel the need to apologize for the poor nursing assessments done in this facility. It is NOT a full assessment to "peek" under the sheets.
The nurses should get an entire history, including the psycho-social aspects, ADL's..........goodness......anything you can think of regarding this child.
The parent may have to volunteer the info, however, this should be the response AFTER the nurse queries the mom/dad. . .Not after the nurse appears finished and wants to leave the room. Parents may have to initiate the conversation regarding pain and comfort measures/pain meds, etc.
Some nurses are truly at a loss with this type of child. No excuse, however.
Again, I am sorry this happened to this child and his family. . . and you.

Thanks to everyone who answered, I appreciate it! Sorry it took me so

long to respond.

It is uncomfortable fo some people, I have witnessed this ad nauseum, but

a nursing assessment is a nursing assessment. If we just catered to the

"norm" in patients we would be in big trouble, then again, what is norm

when a patient comes in anyway? Thank you for your caring response. I

wish all of you were the nurses that hospitalization!

Ojo

OjoRn · Sep 9, 2005

my son has cp and yes the nurses should assess ADLs.lazzzzzzzy*ss nursing. I dare a nurse to ignore my child,its not your sisters job to make sure the nurses have it easy,its there job to make it easier on your sister and the child.no we dont drive nurses crazy its there job to see every need of a patient.i mean they do get paid to NURSE!!!!!!!!!!!!!!!!!!!!!!!!!

Thank you (and everyone) for your response. I know you understand

the dynamics and nuances of a child with CP. They are pretty neat kids.

Again, it would have been perfect to have people like you there to care

for my sister's child. Bless you and your son.

Ojo

Pediatric Critical Care Columnist · Sep 12, 2005

I'm so sorry for the treatment your family received from the hospital staff. How unprofessional. I hate to say it, but I work with nurses who are just like this. They just don't get that these kids are valued family members... they contribute in their own way to society... that they are loved as much, if not more, than the so-called "normal" kids... that they derive pleasure from their lives... and most importantly that they deserve the same level of medical and nursing care as anyone else. One of my coworkers has been heard to complain about being assigned to care for what she calls "the gorks", that her skills as a critical care nurse are wasted on kids like that, and that "it's not like we can fix them anyway". I'm just waiting for the day that she says something like that where I can hear her. She will never be the same when I'm done with her.

Parents of children with chronic medical problems get a reputation for being "difficult" when they advocate for their child and want to take part in their child's care. Go ahead, call me whatever you want, but I am the expert in my son's various problems and I will not allow anyone to tell me that I can't continue to care for him as I always have. He would likely not be alive today if our family had not done everything possible to keep him that way. (Big sore spot with us right now...) We nurses have so much to learn from parents of special needs kids. It breaks my heart when one of these kids comes into hospital in immaculate condition only to develop decubitus ulcers, aspiration pneumonia and other nasty complications from lack of proper positioning. It really isn't hard to ask a parent what works best for their child in any aspect of their daily care. And it isn't hard to talk to the child and provide comfort, but it does take recognition of the child's humanity and worth. Sadly that, like humility, can't be taught.