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I adopted my daughter from South Africa. She was born with HIV. Both of her parents had it and she was orphaned before she was 1 year old. A Pastor took her into his home for orphaned children. He was connected with my church in the states; his home was named after our church because we raised the funds to build it (when he first began he was taking the infants into his own home). She became my sponsor daughter, and after many years of bureaucracy and red tape, I was allowed to adopt her even though I was single (the Pastor fought hard for me because she has HIV and would likely never be adopted, and I had met her 3 times on missionary trips with my church to his home). Anyway, I often wonder if anyone else has ever adopted a child with HIV, whether knowing before-hand, or finding out later. DD came home when she was 4, and is now 10. She is still pretty healthy, although has her ups and downs. I know she will not live forever, and that breaks my heart. But I knew that going in. I love her deeply and treat her just as I do any other child without HIV. I don't do the whole "universal precautions" crap. Everyone in our house is taught to never touch another person's blood, toothbrush, razor, etc. End of story. I treat her "boo boos" un-gloved. If I have an open cut or wound on my hands., I cover it with waterproof band-aids so that if I need to treat a boo boo I don't need to be concerned. Her Dr. supports me in this, pointing out that it's important that she feels as normal as possible. As long as she knows that no one else can touch her blood (which she does, very much), it's fine. I just want her to be a kid and lead as normal of a life as possible, for as long as that is. I'm not really sure what the point of this post was. I really just wanted to see if there was anyone else out there in the same boat, and how you handle things. I've started counseling recently to hopefully "prepare" myself for the inevitable, at the suggestion of DD's Dr. He says she has 10 to even 20 years, but that the sooner I prepare myself, the better, because of opportunistic infections that can come at any time and throw that 10-20 years out the window. ___________________________ Lily :loveyou: Foster Mom to girls getting out of Sex Trafficking AD A (10) :southafrica: :flower: Current Placements: H (17) :drive: and her littles K (3) :thankyou: and J (1) :firefighter: 4/14-Present P (15) :hippie: and her little G (4mos) :paci: 12/14-Present S (14) :banana: 1/15-Present
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I do not know where your doctor took the information from that she has "10 to even 20 years". I also have no idea why he sends you you counseling to "prepare for the inevitable". Oh how melodramatic. I hope your daughter is on anti-retroviral (ARV) medications - is she? If no, why not? If your daughter adheres to her medications schedule, which is typically taking a few pills twice a day for the rest of her life, then her life expectancy should be close to normal. The viral load should eventually become undetectable. While ARVs may have to be taken lifelong, there will be a lifelong suppression of the virus. Here is an article: [url=http://www.dailymail.co.uk/health/article-2525956/People-HIV-positive-live-long-general-population-treatment.html]'Being HIV positive is no longer a death sentence': Those who take medication may live almost as long as the general population | Daily Mail Online[/url] This research article that says "Successfully treated HIV-positive individuals have a normal life expectancy." [url=http://www.ncbi.nlm.nih.gov/pubmed/24556869]Impact on life expectancy of HIV-1 positive individuals of CD4+ cel... - PubMed - NCBI[/url] Just google "life expectancy for HIV positive individuals" and you can find more information. Sorry to be so blunt, but it sounds like your doctor is stuck in the 80s and does not know what the heck he/she is talking about. I recommend switching immediately to an HIV specialist who is updated on modern day treatments and can prescribe a proper ARV regimen for your daughter.
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ART drugs are no walk in the park. And they are metabolized differently in children's bodies than in adult bodies. You are reading about adults - who were infected as adults. Their bodies did not develop while infected with HIV and taking medications with potentially harsh side effects. To the OP, I'm sorry, but while I have several adult friends living with HIV, I don't know any kids - or anyone raising kids - with HIV. But I hope you find some connections.
To the OP: Please PM me, and I can get you in touch with HIV specialists. I can also refer you to parents who adopted kids who are HIV+. I also recommend contacting positively orphaned: [url=http://positivelyorphaned.org/]Positively Orphaned | HIV Adoption Photolisting | Special Needs Adoption Stories[/url] I have communicated with them quite a bit, they are awesome, and they are a huge resource for kids living with HIV+.
2Moms, Yes, I know more than the child's doctor. Take that. Your post is arrogant, you make all kind of statements without having the slightest idea what the extent of my knowledge is and you yourself have no idea what you're talking about. You even admit yourself that you do not know any kids or adoptive parents who have kids who are HIV+. In short, you don't have relevant knowledge at all, and yet you're replying and even offend me. Crazy. To the OP: Please PM me, and I can get you in touch with HIV specialists. I can also refer you to parents who adopted kids who are HIV+. I also recommend contacting positively orphaned: [url=http://positivelyorphaned.org/]Positively Orphaned | HIV Adoption Photolisting | Special Needs Adoption Stories[/url] I have communicated with them quite a bit, they are awesome, and they are a huge resource for kids living with HIV+.
No, I don't know what your expertise is. And I'm not an HIV expert. But I do assume that a mother who has been raising a child with HIV for 6 years has gone beyond the Daily Mail Online for research. I also know enough about HIV treatment to know that asking the mother of a child with HIV if she has heard of ART drugs is a bit like asking the mother of a child with diabetes if she's ever considered giving her child insulin. It's been the standard treatment for years. And that did seem a bit arrogant to me. If that makes me crazy, I can live with that.
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No, I don't know what your expertise is.
But I do assume that a mother who has been raising a child with HIV for 6 years has gone beyond the Daily Mail Online for research.
I also know enough about HIV treatment to know that asking the mother of a child with HIV if she has heard of ART drugs is a bit like asking the mother of a child with diabetes if she's ever considered giving her child insulin.
And that did seem a bit arrogant to me. If that makes me crazy, I can live with that.
givingthemhope
I'm not really sure what the point of this post was. I really just wanted to see if there was anyone else out there in the same boat, and how you handle things. I've started counseling recently to hopefully "prepare" myself for the inevitable, at the suggestion of DD's Dr. He says she has 10 to even 20 years, but that the sooner I prepare myself, the better, because of opportunistic infections that can come at any time and throw that 10-20 years out the window.