Thursday, June 24, 2010

Living with HIV

This post is long overdue. I am asked quite often by parents considering adopting a child with HIV as well as people that are just curious what it is like to raise a child with HIV.

Honestly, our lives are not that much different than any other family. The only real difference is that Victoria has to see her doctor every 3 months and take medication each day.

This is what our doctor visits are like -

Before we leave for the doctor we put on Victoria's "magic" cream. It is a lidocane cream that numbs the skin where her blood will be drawn.

Then we cover this area with a clear plastic like what they use to hold an IV in, so that the cream doesn't get on her clothes.

We love everyone at the doctor's office from the secretaries, to the social workers, to the nurses, to the doctors. Victoria is very at ease with them and never gets upset to go to her appointment. They always have a little something for her - this visit it was a new book.

They talk to us about any questions or concerns, ask how everything is going and then they do the blood draw. Victoria is so good for this and just sits really still. Sometimes she even helps with putting the tubes in to draw the blood.

A pretty bandaid and the doctor visit is over.

The next question I get asked is about medication. As many of you know that read my blog, we had a scare with Victoria having an allergic reaction to one of the first medicines we tried. Thankfully we have found a great combination now. In just over a month of being on these meds Victoria's viral load was undetectable. She also has absolutely no side effects up to this point.

Victoria's medicine is very easy for us. She only has to take 1 1/2 pills once a day and she can swallow pills just fine, so it really only takes about 30 seconds out of our day for her to take her medicine. She takes it at dinner time, so if we are going to be out I just bring the pills with us and she takes them when it is time.

This is Viramune - Victoria takes 1 pill of this medicine

This orange pill is Epzicom - Victoria takes 1/2 of this pill each day

This is what I put on the table each night for her with a drink. For a while we were putting the 1/2 of the orange tab into a capsule to make it easier to swallow (so there was no exposed medicine on the end), but lately Victoria has been just taking it like this.

I get asked a lot about the cost of the medications. This is probably different for every person because of different insurance coverage, etc. It will also depend on what medications and how many your child is on. For us, we are lucky to have pretty good prescription coverage. Our copay for one month supply of Viramune is $47.77. However, the company that makes Viramune has a copay assistance program (as do most of the manufactures of HIV meds) that covers up to $50/month out of pocket copay. It is a card that looks like a credit card that you swipe at the pharmacy. The card is good for one year. So, what this means for us is that for at least a year we will pay nothing out of pocket for her Viramune. We have not had to fill a prescription for her Epzicom yet because our doctor has been able to give us sample bottles that they had in their office. When we do have to fill the prescription, the maker of Epzicom offers the same type of copay assistance. Since Victoria only takes 1/2 pill per day the copay should be less each month because we only need 15 pills instead of 30. Obviously at some point in the future we may have to change medications or dosages, so this may change.

The other common question I get is what type of precautions do we take. With Victoria's viral load being undetectable even contact with her blood makes the risk of transmission next to nothing. However, since we do know she is HIV +, we are responsible about it and do take some minor precautions. Our children do everything together that any other siblings do. The only thing we are careful about is that they don't share a toothbrush (because your gums can bleed) and when they are old enough they will not share razors (for obvious reasons). If Victoria does get a cut or scratch we make sure to cover it with a bandaid until it scabs. We do have "emergency" kits that we keep on each level of our house, in our cars and one in my purse for when we're out.

This is our kit - I bought a few of these travel size make up kits at the store.

They have a few pairs of gloves, bandaids, antibacterial wipes, waterless antiseptic, a few different size guaze pads and tape (in case of anything big that the bandaid won't cover) and a few plastic baggies to dispose of anything with blood on it.

Of all these things, the only thing that is on a daily basis is Victoria's medication. I would have to say that the hardest part of raising a child with HIV is disclosure. Who to tell, when to tell, etc. We have been pretty open about Victoria's status (my blog is public of course) and all of our close friends and family have been very accepting and wonderful. I know things will get more complicated as Victoria gets older, but we will just take it one day at a time.

If anyone has any questions, I am happy to answer!


  1. Thank you so much! I cant wait to show my husband this post! Victoria looks like she's gotten so... old all of a sudden!!!! She's such a cutie!

  2. I found your blog many months back and because of you was open to even considering a hiv+ child. Thank you for your honesty and information. I started looking at the Reeces Rainbow site and then another blogger sent me to another site postivileyorphaned so i learned some more. Thank you for educating us.

  3. I just priced both meds, for us, each one costs $200/YEAR with UHC. That's a price not many families would notice on a monthly basis!

  4. Wow Brooke that is great! I was just happy that our copays will be less than $100/month. If people have good insurance like you than I would say that medication costs should not be much of a concern for them.

  5. Such a great post! I am definitely linking to this one. Thanks for sharing. Your daughter handles those visits so well. That's great!

  6. Thanks for posting this information. I think a lot of folks are curious about the daily routine of raising an HIV+ child, and your post basically reassures us all that it is so totally doable. Thanks again!

  7. Ok some questions that have come up today (not from me, but I dont have answers, so I figured Id ask and pass the word along): What happens when a person with HIV is sexually active- will an undetectable viral load protect her partner?
    Can you get HIV from throw up? (The question was, what happens if your kid throws up, and you clean it up as most moms would...)
    If they shouldnt share toothbrushes, does the same go for anything that goes in their mouth- utensils, share food, share drinks, etc? I know you cant get it from saliva, but couldnt there still be a risk if a toothbrush is a risk?
    If you can get it from "other" bodily fluids, what about through mucous from the nose, or a sneeze?
    Again, these were asked directed towards me, and I didnt have an answer, perhaps you might? Thanks again for your openness with this subject

  8. So, I keep reading about cancer being closely related to HIV... any insight? Does this seem to be a common thing or an intimidating warning?
    Can you tell, I cant let this rest?

  9. HIV can NOT be spread through casual/household contact. HIV is not spread through hugging, kissing, shaking hands, sharing toys, sneezing, coughing, sharing food, sharing drinks, bathing, swimming or any other casual way. It has been proven that HIV and AIDS can only be spread through sexual contact, birth, breastfeeding and blood to blood contact (such as sharing needles).

  10. We are leaving this week to bring home our son who is HIV. We are so excited. I am still in the process of educating ourselves about the disease, medications, management on a day to day basis, possible medical needs etc. If you have any resources and advice to pass onto us, we would love it! Thanks

  11. This is a great post. Thank you for the info.! I have been searching for information just like this from a real family for a while. I think my biggest question aside from precautions you take was what other people say or do when they find out. In the case of children I always wonder what another parent would say if they find that their child had been playing with my child who is HIV+ and I didn't let them know that first. I will be following your blog for more info. Thank you for taking the time to share it with all of us!

  12. She seems like a amazing little girl & how lucky you are to have her. May I ask how she got HIV and would it turn into AIDS? Does her teacher have to know at school?

  13. I just sent this post to someone and saw Anonymous' comment, so I'll respond. I don't know Victoria personally, but like most children with HIV, she likely contracted it from her mother, mostly likely during delivery. As long as she continues to take her medication, her virus will not progress into AIDS. I believe whether or not you need to disclose to your school depends on where you live. Where we live it is not necessary.

  14. Hi! I just found this link through the RR site. We are open to adopting an hiv+ child. I am wondering how much of a risk, and how you will handle it once she goes through puberty. I know that's kind of a tmi question, but a valid one for girls. We have a large family already with eight children, so a lot of bathroom sharing going on! :)

  15. Isn't a child with HIV also more likely to have alcohol/drug exposure?

  16. Anonymous - the biological mother of the child may be HIV+ due to intravenous drug use (not alcohol use) or from sexual intercourse. When adopting a child, if this information is known about the birthmother, it will be disclosed if she was an IV drug user. Children born to IV drug users often fare better in the future than those exposed to alcohol in utero.

  17. Shyla,
    I think you are asking if other family members in the household can transmit HIV from the menstrual blood. The answer is no because HIV is transmitted through unprotected sex, intravenously and from mother to newborn. Menstrual blood will be handled like any other blood...clean up any soiled surfaces with soap and water (or Clorox wipes are also handy), discard (or wash) anything that got blood on it, cover any open wounds then wash hands.

  18. We are thinking about adopting a child with HIV.

    My question is how does the child deal with dating when that time comes? Is marriage out of the question? Is it impossible to have a biological child?

    It would seem that it would be.

  19. Dating, marriage and having a healthy biological baby are most definitely possible. It might help to read some stories of children were grew up with HIV and are now adults in their 20s and 30s. Here are some links:

    Alee Meredith

    Ben Banks (article)

    Ben Banks (video)

    Christina Rock

    Hydeia Broadbent

    Jake Glaser

    Julie Jones Barnes

    Lafayette Sanders

    Paige Rawl

    Ramona Belfiore

    Shawn Decker

  20. Hi, I work in a communication company I want to share my testimony to the world, my name is maria katrina, i am from united kingdom in belfast north ireland, I was a stripper in a club I got effected with HIV due to the nature of my job, In april 15 2013 i was tested positive to HIV, Believe it or not this is a true life experience. This is not design to convince you but its just a personal health experience . I never taught doctor hakim could ever get my HIV-AIDS cured with his healing spell, i have tried almost everything but I couldn't find any solution on my disease, despite all these happening to me, i always spend a lot to buy a HIV drugs from hospital and taking some several medications but no relieve, until one day i was just browsing on the internet when i came across a great post of !Michelle! who truly said that she was been diagnose with HIV and was healed that very week through the help of this great powerful healing spell doctor ,I wonder why he is called the great papa hakim, i never knew it was all because of the great and perfect work that he has been doing that is causing all this. so I quickly contacted him, and he ask me some few questions and so i did all the things he asked me to do, He never collected any money from me until I was finally cured, only to see that at the very day which he said i will be healed, all the strength that has left me before rush back and i becomes very strong and healthy, this disease almost kills my life all because of me, so i went to hospital to give the final test to the disease and the doctor said i am HIV negative, i am very amazed and happy about the healing doctor hakim gave to me from the ancient part of africa, you can email him now for your own healing too on his email: thank you doctor for healing me from HIV. I am free and happy. here is my mobile number to really confirm from me +44702407844

  21. This comment has been removed by the author.

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  23. Could you tell me a little more about disclosure? I feel like I couldn't ask our other kids to keep that information quiet, but how does one go about disclosing to family/friends? Just tell everyone w/ your adoption announcement? Wait till you're home to tell everyone? What have some of your experiences and successes been in the area of disclosure? Thanks.

  24. Disclosure is a very personal matter and families affected by HIV handle it in vastly different ways. Some are loud and proud and others wait until their children are old enough to decide for themselves who to tell. The disclosing families often wait until friends and family get to know and love the child before disclosing in person with some literature handouts with facts about HIV.

  25. I to am considering adopting a child with HIV but I worry I may loose my child. What are the chances of my HIV infected child living a long healthy life if we do adopt a child with this serious condition? I know there are several cures by now however the pharmacy makes more money keeping people sick. A shame

  26. Hi, my name is Joy and I have a 6 yr old I adopted domestically back in 2008. I'd love for our 2 kids to get to know each other via FB or email. Lorinda's FB for pediatric HIV/AIDS awareness is

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