Tag Archives: HIV Medications

FYI

7 Jun

Sorry for the lack of blogging lately.  Life is busy, and we have been battling ringworm in our house for about two months.  It has been “lovely”  just barrels of fun  Our son apparently is fungal prone (doctor’s wording) and got ringworm of the scalp yet again.   (He also had it last spring.)  Yesterday after another trip to his doctor, we picked up his second round of medication. 

What was different this time around was that he “shared” it with others.  My husband, myself, our daughter, and poor ol’ nana all got numerous spots on our neck or arms.  I went to the dermatologist not knowing what mine was at first, and the doctor said that ring worm of the scalp can spread to others on the skin.  It’s the same fungus.

So why am I writing about this here…well everyone in our house got ringworm except… Noel.  I found that amazing.  You would think she would have gotten it too, but she still has not gotten any spots.   It just goes to show that HIV medication does wonders.

Life Before Meds and Us

27 Jul

Since coming home with our  precious child, I have often thought of a few questions.  What if there were no HIV meds?  What if Ethiopia did not get aid or help with HIV medications?  What if our daughter was not given HIV drugs starting at age one?  Would she have been alive at age two for us to adopt?

In May, Jen posted about HIV stages.  When I read about the stages, I thought…I wonder what our daughter’s stage was before she started on medications.  Well, I recently found a document from the WWO-AFO Worldwide Orphan Foundation  -Ethiopia that notated about her HIV stage.  Dr. Sophia Mengistu, the clinic’s doctor, noted that before starting medication our daughter was  diagnosed with the  HIV virus, a severe immunosuppression(CD4 percentage 9),WHO Pediatric Stage 3 with moderate malnutrition (under wt and stunted with BMI<3). 

We knew our daughter could not have been doing well before medication.  Her little body still shows signs of being affected by the HIV virus prior to medication. 
So what was Stage 3 life like for her???

We were given a painful glimpse into her past through two photographs.  An AWAA family traveled in Dec. 2008 and took pictures of children at the Kidcare Orphanage (They now don’t allow this.)  Anyway, I looked through this family’s online photo album and saw two pictures of our daughter just after she had turned one (Dec 08 was the same month she started her HIV meds).  She was sleeping in a crib and looked horrible.  Her face is sunken in, and she was tiny and sickly looking.  To be honest, she looks dead in the pictures.  I wept when I saw her photo.  She was so little, so young, so sick, and so alone.  I wept for our daughter painful past but also wept for HIV orphans still waiting for a home. 

We saw what Pediatric Stage 3 looked like for our daughter.  Life before medication didn’t look like any life at all.  From the looks of her one year old photo, she would not have made it to her second birthday and her adoption if it weren’t for HIV medications.  I praise God for the Worldwide Orphan Foundation and other organizations that help Ethiopia care for its HIV population.  I praise God for getting our daughter care so that she could live and be adopted into our home.

You have probably heard of the Lazarus Effect , where there is a huge difference once a person starts on HIV medication.  Well, we have seen it first hand.   From her Stage 3 photo to now is amazing.   Once lifeless in a crib to our home where she loves to read books, feed her dolls, play with balls, be tickled, dance to music,  play with  jewelry, and especially loves giving kisses and hugs to her family. 
What a difference medicine can make! 
What a difference a home can make!
What a blessing!

Getting Sick

15 May

This week has been a little hectic in part due to a sick kid.  If you assumed the sick kid was my HIV child, you would be wrong.  She has been home for 5 months and has only had one little cold that did not require a doctor’s visit.  On the other hand our son, who has been home for 4 months, has been sick several times and is the one that is sick with his second double ear infection plus he has ringworm on his scalp.  We have thought several times…isn’t this our “healthy” child?

Aside from the HIV virus (which may need medication),  children with HIV are “normal” kids.  If their HIV medicines are controlling their virus well, they really don’t have a compromised immune system – where they are getting sick all the time.  Our child’s blood work or CD4 count looks like a “normal” child.  SO she has not been sick more than “normal” kids in fact she has been sick less often than our other two “normal” children. 

I assumed our HIV child would get sick each time one of our other children got sick…that has not happened yet. 

That being said…I would like to write about a few of the things I do for all of my children which I think benefits my HIV child as well.  These are common sense good health practices for all children.   Here are a few of the things I do…

*We wash our hands before eating even when we have been at home.
*We don’t eat or drink after each other.
*We always wear shoes outdoors.
*We don’t eat raw cookie dough.
*I wash all fresh fruits and veggies with soap before we eat them.
*I use hand sanitizer on their hands if we can’t get to a sink.

But you can only do so much.  Kid will be kids.  Our daughter has already eaten a handful of potting soil  and has been caught playing in the toilet 5 times.  What are you going to do?

Our Child’s Daily Meds

8 May

Taking medication is one of the things I want to write more about later.  In the meantime here is a glance of what our daughter’s meds look like. 

Our daughter takes 3 liquid medications twice a day.  She takes 9 ml of Viramune, 4 ml of Epivir, and 9 ml of Zidovudine (generic for Retrovir).   She started taking these medications at 12 months of age when she was in an Ethiopian Orphanage.  Our U.S. doctor has kept her on these medications because they are working great.  Her HIV levels are undetectable.  Our doctor says these liquid HIV medications are prescribed the most because they are a little better tasting than others.

On our insurance plan the two name brands are $35 each and the generic is $15 for a total of $85 a month.  Some states give help with HIV medications through the Ryan White Program.  Each state’s program is different.  In our state, the program helps with lab work, doctor’s visits, and medications for families who qualify based on their income.

At first, $85 sounded like a lot per month.  Can we do that?  Then I remembered that’s around what we spend on cell phones per month.  It’s all a matter of perspective.  It’s all a matter of priorities.  If need be, we can live without cell phones (and a lot of other secondary things).  Our daughter can’t live without meds.