Family member potentially being given "medical advice"

[GingerNerd]

I was diagnosed in February of this year, got on meds ASAP, and had confirmed undetectable results by June.

I disclosed to the rest of my family in late June, and they reacted relatively well. My sisters have been supportive, and my parents have been supportive but are dealing with irrational fears.

I have a 2-year-old niece, and the sister who is her mom lets me see her, play with her, change her, etc. However, my mom told me yesterday that my niece's pediatrician told my sister that the baby should not be around anyone HIV+. According to my mom, the pediatrician's office forms even ask whether HIV+ people are in the patients' lives.

I was told this rather late last night, so I only got to speak to my sister about it briefly. From what my sister said, it appears that either the doctor or some pamphlet or paper received from the doctor, says that children should not be around HIV+ people until after certain testing is done. I'm not 100% about the exact source of the info because of the brief nature of the conversation.

Anyway, I told my sister that I've probably had whatever testing done already, and she said she was under the impression that the testing to be done was on the baby, not me. Again, I couldn't get more info because it was fairly late at night by the time I could talk to her.

I told her that I didn't think her doctor was giving her correct medical advice, but that if she felt she needed to follow it for the baby, that I wouldn't be mad. Of course, it's not clear what she or I would need to do to follow it: Do I not touch the baby? Can I be in the same room? Can the baby play with adults who were in contact with me? Regardless, I'm not going to get angry with her if she is trying in good faith to do what's best for her child, especially since she has been accepting of me and never told me I couldn't play with the baby. I don't think she even wanted to tell me about this whole thing.

I have no idea what the reason for the recommendation is. I don't know if the doctor thinks the baby will get HIV, or if the doctor is worried the baby might be exposed to a rare infection because of my HIV (analogous to playing with unvaccinated children), or what.

Is there any possibility this is legit? As in, are there any circumstances where this would be a valid recommendation? Or is her doctor feeding her bullshit that my parents are overly willing to latch onto?

Obviously I'll have to follow up to get more specifics, but I've been trying to look into it myself, and I can't seem to find anything. There are some health circumstances with my niece, but I don't want to post anything about her medical situation, even in a forum in a relatively anonymous fashion.

My impression after I got diagnosed and learned more about HIV was that it shouldn't be a problem, especially after I became undetectable. My cd4 count has never been below 500, so I've never been "immunocompromised" or been at significant risk of developing an opportunistic infection.

Insight appreciated.

[harleymc]

I've never heard of anything like this since 1986.

As long as you're vaccinated against pertussis, diptheria, measles, mumps, rubella and chicken pox you are absolutely no risk to the child and the child is no risk to you.

Unfortunately that is of no help to you if your sister doesn't want you near her child.

[Jim Allen]

 

Long story short there is not much you can do, of course its utter bullshit !

Or is her doctor feeding her bullshit that my parents are overly willing to latch onto?

You have the answer already yourself.

My GP told my now ex-wife that she should reconsider allowing me access to my children a few years back as I was a danger to them, so I am not totally surprised but deeply pissed off to hear a similar story.

Swift threat of a court case and asking for proof resolved the matter for me, I also made a ugly and public moment for the GP's at there office making them apologise but that is different as it was my own kids, in your case its not.

There are plenty of HIV positive parents here, Us being a danger to  kids or kids to us, horse manure. What your sisters doctor said belongs in the dark ages - Shame on that doctor.

Its is utter rubbish as people with HIV are no danger to people around them and its just feeding into paranoia.  The route of infection are well documented and as long as you are not sleeping with someone or sharing needles there is no risk in social setting, UD or untreated or otherwise.

My advice take a deep breath, ( I know I will need to do so after just writing this post) 

Yo can't force but kindly invite them to see your doctor a HIV specialist next time you go or perhaps a more neutral family member so they can directly ask a real "specialist" and hear it for themselves, that may help change or influence the irrational (but understandable in the circumstance) decision of the kids mother.

jim

[GingerNerd]

Thanks for the answers so far.

I'd like to clarify that it's not at all clear to me that she doesn't want me around the baby. She didn't even clearly state whether she's committed to following the advice. From the day I told her about my HIV she has continued to let me play with the baby, and she has gone out of her way to take me on outings with her and the baby.

It's quite possible my parents are pressuring her to follow that advice, or are attempting to use that advice to reduce my contact when the baby is around them and me. I told my parents that I would be accepting of their coping process and forgive a certain amount of irrational fear (and give time to adjust), but that if they did not take reasonable steps to become informed or deal with their fear that I would make a big deal out of it and tell them off over it. I've offered from the beginning to help them find counseling, whether individual or group, for family of HIV+ people. I've also told them they could try talking to their doctors about it.

I just recently moved back home, so I don't really have good access to resources yet. When I was first diagnosed I had a good medical team at a good hospital and access to therapists and a support group. Right now I just have an ID doc I've visited once. I'm not sure how I feel about him yet. Perhaps I need to put more of a priority on that.

Thanks for the advice and insight so far. More comments still welcome.

[Jim Allen]

Yeah so getting a relationship going with your own ID doctor is good idea. I know its hard if you just moved and have a new one.

Personally I would not be telling people close to me to ask their doctors, my experience is not positive pardon the pun, when none specialised doctors speak about HIV as they are sometime very much outdated or have there own irrational fears.

Wishing you all the best, I think in time you should convince one of the family members to speak to your ID doctor when you have build that relationship up,  that could change the thinking and start putting their minds at ease.

Jim 

[mecch]

I would try to get a copy of the written guideline that patients at that office are receiving, about keeping babies away from HIV+ people.  Then give it to an approrpriate expert such as your doctor or any GP really, who will be willing to call your parents or sign a letter that you can give to your parents that will tell them the information is bullshit. I would do this is in a friendly and matter of fact way.

I had a similar family situation when I came out as gay years ago in my 20's.  First from my sister. My sister had battled anorexia and bulimia for years.  When I told her I was gay, she said, oh well, now there are two fucked up people in the family.  I corrected her and said being gay was not a mental illness but she wasn't all that convinced.  I was surprised when my parents took the same attitude - now 2 children with damage.  Mind you, nobody was angry or withholding love and support.  They genuinely saw being gay as this huge challenge and mental condition.  I didnt fight it. I did photocopy an article for them about how in the 1970's homosexuality was removed from the list of mental illnesses by the APA who are the experts. This seemed to tamp down their prejudice a bit.

[TheNormalLife]

Sorry for what you and your family have been put through.

First I would tell to my ID; generally we all have a good relationship with them and are empathetic about topics such as ignorance and stigma. Second, If your sis and ID agrees I would bring him/her to the next appointment with the pediatrician and ask for clarification on the statement.

Someone who gives medical advice like that without scientific evidence is not so much of a problem for you, but for your little niece and the quality of her healthcare.

Ray

[Azrael2012]

I'm sorry for what is clearly misguided and in fact dangerous advice by a medical professional towards anyone who is living with the virus. You cannot transmit the virus onto your sisters children by being around them in the same way that you cannot transmit the virus onto your family by being around them either.
It make me so angry that this type of medical negligence is out there today. This doctor is living in the 1980's and I'd dread being around anyone like that today.
It sounds like your sister needs to educate her doctor.
I'm very passionate about this, I've been around this type of negativity and it only reinforces the need to properly educate heatlthcare professionals about HIV.

I've been a HIV educator and activist for over 20 years and I'm stunned.
 I hope things work out well for you and this nonsense don't have a negative impact on your health.