pediatric HIV/AIDS nurses?

[RachetRN]

Hi nurs20

Your question is:

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.

All of the CP kids I work with are Trached & on vents, mainly because I am checked-off\trained for vent dependent care. The pulmonologist (Leroy Graham, a GREAT doc!!!) theorizes that for someunknown reason hypoxia during the birthing process causes some aspect or other of damage to the delicate fetal system. Hope this helps, but I do not see how it could.

The large variety that this disorder can manifest itself in is unreal. From the severe damage that we often see as nurses, to person's with mild limps, speech impediments or minimal physical deformities, that lead full and typical lives. There is a CP education center where you can learn much more. I posted the address below. Hope it helps you out more than I did

The Family Village Library Cerebral Palsy

A society devoted to the study of cerebral palsy and other childhood onset disabilities & the promoting of professional education for the treatment and management of CP.

I could not get the hyper link to recognize the _ between lib _cerp, so you will have to type the address yourself:( It is as follows:

[kids]

I have worked with several CP kids with trachs both with and without vents. The majority got their trach due to a (usually aspiration) pneumonia with prolonged mechanical ventilation. Many of these kids have a degree of swallowing inpairment...the trach makes it much easier to clear secretions. My theory in some of the vented kids is that chronic aspiration and repeated pneumona has destroyed so much lung tissue the have some sort of RAD.

[BeachNurse]

In a previous post I mentioned that we we had an AIDS patient (11 year old) who was being denied his HIV meds. We began sending out a home health nurse to perform DOT (directly observed therapy-the nurse gives the meds and watches the patient swallow them).

Well miraculously, after one month, this child's viral load went from over 750,000 to 40,000!! We are all obviously happy (except for the guardian, who is not liking that we proved that meds actually WORK) The only downfall is that funding for DOT is tight right now and we are not sure how long the money will be there for this service.

I can't wait to see his NEXT set of labs! :) :)

[nur20]

In one particular case, all medications to be given coincides with the nursing hours, and all parental involvement in medications are taken away. Child now has full blown aids

[BeachNurse]

Nur20, I am not sure what you are trying to say (?) We have known for awhile that he has full-blown AIDS. He still needs to take the meds. If he does not, he will surely die.

The guardian is not willing to give/enforce medication admin., previously stated that she DOES give the meds, but the labs showed to the contrary. With nurses going in BID with DOT his viral load is the lowest ever. That is not coincidence. Our staff is reluctant to push removal of the child from the Aunt's home because it is the only home he has known for many years. Both parents died of AIDS years ago. DOT is working great...I'm not sure what will happen in the future for him, but for now he is doing better. AIDS does not mean imminent death, and I feel that the efforts are worth it.

[nur20]

Sorry BeachNurse, I was speaking of a case that i'm currently working.