pediatric HIV/AIDS nurses?

BeachNurse · Sep 8, 2001

Hi, there..I'm a Peds nurse working with HIV infected/AIDs kids. I would definately have to say that I am feeling a lot of frustration with lack of parental responsibility in administering antiretroviral meds. We have several patients that (with AIDS) whose parents are obviously not giving meds or give in the kids refusal to take meds. It's very disheartening!

nurs4kids · Sep 10, 2001

My experience with ped hiv cases is minimum to say the least (less than 3 cases in six years), but I agree with beachnurse. In all three cases, the main problem was lack of compliance with medication. I felt the reason for this was two-fold. All three cases I worked with, the mother had died of AIDS, so the father or someone else was caring for the patient. Secondly, the meds have so many negative side effects, I imagine it's pretty hard for a parent to force a child to take something that makes them so sick.

Just my 2 cents worth..literally

tamdsandlin · Sep 13, 2001

Thanks for responding! Noncompliance is a major issue! A lot of the positive kids I work with have mickey buttons so they don't taste their meds. and therefore don't mind taking it. I have one child in my setting that is a little over 1 yr. old and it is literally a struggle to get him to take his meds. His mother refuses to get a mickey button put in because she does'nt want a scar!!!! Prolonging the childs life vs. a SCAR!!!! It's very aggravating. I absolutly love my job. Is anyone involved with ANAC or PANDA (pediatric aids network of dallas) or something similar?

Reabock · Sep 14, 2001

Please forgive my ignorance, but what is a Mickey button? My only thought is that it is an implanted IV device like a mediport or hickman? In our rural hospital we have few peds admits and have never seen one with AIDS, actually we rarely have an adult with AIDS. Joanne in rural northcentral PA

prmenrs, RN · Sep 14, 2001

A mickey button is a type of gastrostomy tube. It is very low profile, you can actually use a small syringe to give the meds. Some kids need them for supllemental feedings during the night, but once that's done, you can close it and you can't tell it's even there, assuming the kid has clothes on!

I foend 2 sites w/pix:

http://www.usendoscopy.com/penteral.htm

http://www.bmed.com

this is the site for Ballard Medical, go to products, then to interventional, enteral feeding and specialty tubes

RachetRN · Sep 23, 2001

Hi:eek:

Here is my two cents. I do private duty and all the children I work with have a G-tube of one type or other (cath system or Mic-Key) so the problems with noncompliance of giving meds is influenced by bad tasting meds, but only on the surface. As was said, even with a G-tube system the medication is often not given. I think it is partly the side effects and partly denial on the parents part -- like if..."I don't give the meds then my kid will not have HIV and therefore won't die." :confused: . A real delimma.

Maybe if you are in a situation like this a social worker or a family psychologist would be a good person to have intervene with family on the child's behalf. Let me add though, my parents do not have AIDS themselves, most of my kids got HIV from blood transfusions (8-10 years ago) and are now all deceased. So modern times and family dynamics do play a hugh role in this compliance vs. noncompliance issue.

Good luck to you and I wish I had a quick fix for this problem...sorry that I do not!

nur20 · Sep 24, 2001

Originally posted by Reabock
Please forgive my ignorance, but what is a Mickey button? My only thought is that it is an implanted IV device like a mediport or hickman? In our rural hospital we have few peds admits and have never seen one with AIDS, actually we rarely have an adult with AIDS. Joanne in rural northcentral PA

A MICKEY BUTTON IS A TUBE IN THE ABDOMEN FOR WHICH A PATIENT GETS LIQUID NOURISHMENT OR MEDICATIONS PARTICULARLY WHEN THEY CAN'T HAVE ANYTHING BY MOUTH. UNLIKE THE OLD G-TUBE THE MICKEY BUTTON IS FLAT TO THE SKIN AND AN EXTENSION CAN BE ATTACHED OR REMOVED AS NEEDED.I HAVE A HOMECARE CASE OF HIV WITH SIMILIAR PROBLEMS.MEDICATIONS WERE GIVEN SO IRREGULAR THAT A BY CHANCE BLOOD TEST REVEALED NO MEDS IN THE SYSTEM. RESPONSIBILITY WAS TAKEN FROM THE FAMILY AND MORE NURSING HOURS WERE DEEMED NECESSARY. THE MOTHER OF THE CHILD DIED OF IT AND I BELIEVE THERE'S SOME DENIAL THERE

BeachNurse · Sep 25, 2001

One small problem...if the parents/guardian does not want the mickey button placed, then what can you do? Right now we have an 11 year old boy whose guardian does not "believe" in medications. The boy's parents are both dead from AIDS. He has aids. HE HAS A CD4 COUNT OF SIX!!!! Viral load over 700,000. However, he has no opportunistic infections and doing OK. If he would just get the meds in! The guardian does not enforce the med issue. We have social workers, MD's, nurses, case managers, and our psychologist working on this. The child was getting some counseling, but they stopped brining him. We have brought this case to the attention of our hospital's ethic's committe to get some input.

It is so very frustrating. Many people still think that everyone dies of HIV/AIDS. These kids are living longer and longer. One of our foster moms remarked to a social worker that she never expected "her" child to live this long or do so well. The child has a viral load of less than 50 and a healthy CD4. Even AIDS kids do well on the meds. How can we get the health care system and the child protective services to realize that NOT GIVING ANTIRETROVIRALS TO HIV/AIDS KIDS CONSTITUTES MEDICAL NEGLECT????

Sorry..I am just very frustrated with the whole issue..kids being sick due to parental negligence. No one does anything about the parents we report because they think the kid will die anyway. :rolleyes:

BeachNurse · Sep 25, 2001

In addition, I would like to add that I feel that denying HIV infected children their antiretrovirals is NO DIFFERENT than denying a diabetic child his/her insulin. It is a chronic, but manageable disease. Period.

Withholding of life-prolonging medication is the equivalent of neglect and abuse and should result in removal of child from the home and punishment for parent or guardian.

My personal opinion.

nurs4kids · Sep 25, 2001

Beach,

I can not imagine the frustration. I would think the court could intervene on the issue of a MIC, IF it could be proven that this is necessary to sustain life. I'm not sure if our ID department just has a different approach or what, but none of our HIV kids have buttons. Although I, as previously stated, have limited experience with HIV/AIDS kids, I do work the surgery floor and see all the newly placed fundo's and GT's. I can not recall one ever being placed in a HIV child for medication administration. What about a court order to temporarily place a TP tube or perhaps the guardian would consent to this? I know this would be temporary, but it is much less invasive and perhaps if you could show the guardian the benefits of a proper medication regimen, then you could get them to consent to a GT?? Just a thought..

Good luck!

nur20 · Sep 25, 2001

Originally posted by nurs4kids
Beach,
I can not imagine the frustration. I would think the court could intervene on the issue of a MIC, IF it could be proven that this is necessary to sustain life. I'm not sure if our ID department just has a different approach or what, but none of our HIV kids have buttons. Although I, as previously stated, have limited experience with HIV/AIDS kids, I do work the surgery floor and see all the newly placed fundo's and GT's. I can not recall one ever being placed in a HIV child for medication administration. What about a court order to temporarily place a TP tube or perhaps the guardian would consent to this? I know this would be temporary, but it is much less invasive and perhaps if you could show the guardian the benefits of a proper medication regimen, then you could get them to consent to a GT?? Just a thought..
Good luck!

ANYONE WORKING WITH CEREBRAL PALSY KIDS WITH TRACHS? ANY IDEA WHAT CAUSES THIS. OFFICIALLY THE CAUSE IS UNKNOWN, BUT WOULD LIKE TO HEAR YOUR THOUGHTS.