Tuesday, November 9, 2010

More questions and comments about HIV

Does your child know he/she has HIV?

I don't think so but we will be open as soon as it is developmentally appropriate.

What do you mean it can never be transferred from "child to child or child to adult"? Does that mean that only adults can spread it or am I reading that wrong?

I suppose it COULD be spread from child to child but someone would really have to try hard to do it. What I meant is that it is not spread by engaging in regular childhood activities, such as playground injuries, sports, swimming, etc., but rather it is spread through intimate and risky 'adult' contact (sex and IV sharing), OR from mother to child (although nowadays even this is preventable through medications. Our child's biological mother did not receive any prenatal care, thus spread it unnecessarily to her child. Isn't it a shame, something totally preventable passed on to a child who will have to live with it for a lifetime.)

My children's favorite babysitter is HIV positive. The fear we were taught in high school health classes is not the reality. I am so glad that my children will grow up knowing the truth and not the lies we were taught.
Awesome Jill! I would love to hear more about your babysitter and how she deals with the stigma, and relationships. I don't actually know any other people with HIV in real life!

I do have a question....Does your insurance cover the meds or are there places that give you meds for free?
There are many many kinds of medications available today. Our insurance covers all but $25/ month for each of the three daily medications we administer. We signed up for a promotional with the drug company where we take a monthly survey (short-only 5 minutes long or so). In exchange they give us a coupon for up to $100 a month towards whatever our insurance doesn't cover. In other words, we pay absolutely NOTHING for medications!! I'm sure this will vary by state or by insurance company, but we have been very pleasantly surprised with the financial aspect of managing HIV.

Would you be open to doing a post devoted to HIV... what meds, extra precautions, extra doctors visits, etc?
My heart is there, my husband's is coming along...
I too would be very interested to learn about the ins and outs of caring for an HIV+ child -- the "maintenance," the medications/appts., the cost, special precautions/measures, etc.
I will answer this on a separate post, after I have some time to organize my thoughts. Let me just say first that whatever extra precautions and appointments come along with your child will be totally worth it! More soon.

And here was my favorite comment, from Lisa:
Love that you've started sharing about HIV! My Olivia has her own blog and is HIV+ if anyone would like to see what a "real live child with HIV" is like! :)
How wonderful to see that this beautiful young lady is comfortable with being open about her HIV and her adoption. I love her! Thank you Lisa for sharing your daughter with us! I believe we will eventually 'get there' as well.


Sarah said...

I have a question...and I don't think this has been answered yet. In the United States, I'm guessing, kids born with HIV are treated ASAP, and as you said, can go on and live a normal life with pretty much normal life expectancy (afterall it may never turn into AIDS). My question is though, in Eastern Europe, Russia or even Africa. Are these kids medically treated as soon as possible? Are they even treated? If so, how WELL are they being medically treated? If they do start treatment later on in life, do they have a greated risk of their HIV turning into AIDS? Have you found many differences in the medical treatement your child is receiving here vs. in his/her home country? These are questions I've always wondered!


Hevel said...

One of the great things about HIV not spreading from child to child that these days that with medication an undetected viral load is very commonly achieved these days. It is often suggested, though possibly not proven, that in itself reduces risks.

Many years ago I lost a dear friend to AIDS, and now I'm the uncle of a 13-year-old, who is HIV positive. When he went home to the States at 9, he was already showing symptoms of AIDS. Now his viral load is undetectable.

For various reasons (location, and local family law, primarily) we cannot adopt HIV+ children, but we do pray for many of them.

Jill said...

More on our HIV+ babysitter. First off, 'she' is a he...another reason that I love having him as a babysitter. I want my children to know that the men in their life are just as capable of the women to take care of their needs and nurture them. As an added 'bonus', he is also homosexual...ya'll can admit it if you just gasped that my kids are left with an HIV+ homosexual male...you would be far from the first.

He started out as a friend of my husband. He told us very slowly, over the course of months through subtle hints. By the time he officially told us, we had figured it out (at least strongly suspected) months before he officialy told us. He'd mention things about a specialist he went to in a larger city, blood tests he regularly had, and how he takes medication daily.

When we really started to suspect things, we also began researching. My first thought was, "My God my 3 year old drinks from any bottle left lying around!" I quickly learned how incrediably fast the HIV virus dies when it hits the air.....if it was even in the saliva in the first place. We are talking small fractions of a second. I was also needlessly worried about silverware and dishes. Silly stuff really.

Once we were 100% okay with everything through our research, we asked him to babysit for the first time. That is when he told us 'officially'. It was very hard on him (we could tell). He told us he would understand if we wanted to distance ourselves and not have him around the kids. We just gave him a big old hug and told him we'd known for months. It was a truly beautiful moment.

If he does get hurt at our house (and it does happen), he immediately tells the kids to go sit at the table (where he proactively always has something set up for them to do). He takes care of everything- bandages and wipes down the area with clorox wipes to be extra safe- and they go about their day.

It has never been hidden from my kids. I've gotten MANY gasps from other parents that a homosexual HIV+ man is left alone with my children. However, my children are some of the most tolerant children you have ever met. I'd rather my children grow up in a loving environment filled with acceptance than to continue the legacy of fear I was taught.

I have to say that I appreciated the slow reality of it all. It gave me time to do my own research and come to terms with it myself before he faced me with it.

What is most important to me is that my kids are SAFE and LOVED with him. They also making some pretty darn amazing art projects with him...I'm just sayin'.

Shelly said...

First i want to say that i read Olivia's blog yesterday and she is an amazing little girl! I will continue to read hers just like i do yours :)
And for Jill: What you are teaching your children is truly amazing, so many people are SO quick to judge! Your children will grow up and be awesome people because they have been taught the right way. God bless you Jill!

Jill said...

I just reread your post and realize that a I didn't entirely answer your question.

How does he deal with the stigma?
Not everyone knows. A lot of people do, but it isn't like he goes around with a big sign or anything. He has lost friends over it, but he is a very self-assured person that realizes if people don't care enough to educate themselves and would rather live in fear, they aren't the type of person he'd want to be friends with in the first place.

He does have periods of some pretty major depression, which breaks my heart. It is sometimes hard to live with. For him, the stigma is much harder than the disease. I'm hoping in 20 years when your child is that age that we are all more knowledgable and tolerable as a society.

Christine said...

Great info Charissa. So glad that your daughter is doing so well!

catusa said...

I read an interesting article on AIDS in Eastern Europe that you might find interesting. It was in the Sept 20, 2010 edition of TIME magazine. One of the interesting facts was that only 23% of people in Easten Europe have access to antivirial drugs and this may be contributing to the babies being born with the disease. Very sad!

Positively Orphaned said...

Urbans: I know you are going to be answering the 2 questions regarding the additional medical aspects of an HIV+ child compared to an HIV- child, but in the meantime I just wanted to share this link to a post titled Living With HIV written by another adoptive parent who discusses this topic: http://hosfordfamily.blogspot.com/2010/06/living-with-hiv.html

Catusa: thanks for the tip on the Time article. I couldn't find the 23% figure, but a few other notables: it says that 70% of injecting drug users in Ukraine have HIV (compared to 1% in Romania). It also says "UNICEF reports that combined international investment in HIV in the entire region of Eastern Europe and Central Asia 'does not come close' to investments in a single country like Ethiopia, which records a similar number of HIV cases as Russia or Ukraine."

Jill - that is so awesome your kids have a babysitter they adore so much AND they are being raised with tolerance and diversity.

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