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!