HIV FAQ: What about the medical treatment, expenses, and prescriptions?

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This topic has received more questions than any other:
What is the extent of medical care involved in adopting a child with HIV?
Is affording the medication manageable? 
 Are you going broke on the cost of the meds?
 How expensive are the medications? How often do you have to purchase them?
How often does your child have to go to the doctor?
How many medications is your child on?
Will they be on the same medications/amounts for their entire lives or will the types of medicine and amounts change as they grow and change? 
This question come up a lot in adoption, particularly special needs adoption: What about the costs? When a child is born to us, we can't foresee what medical expenses they'll have or when an ER trip will hit or how many times they'll have to see the doctor. We say yes to those uncertainties, not knowing if the expenses will run high or low or average.

We say yes because we deem our biological children to be worth it.

We say yes because they're "our flesh and blood."

We say yes because we'd never think of saying no.

It gets dicier once we're talking about adoption, especially in the early stages. Before you know a child who is waiting for a family, you can't see the humanity that comes before a diagnosis. Checklists on adoption agency forms ask which special needs you're open to. While my friend Amy Julia can write elegantly about using first-person language when speaking of Penny, her daughter with Down syndrome, it's a lot harder to put the child first and the diagnosis second when the adoption is still hypothetical, with the child feeling that way as well.

In adoption, we can say no.

And when we say yes, we have the opportunity to prepare more in advance, at least for the diagnoses known prior to the adoption.

It strikes me that these questions are actually coming from two different camps, so I will answer them in two ways. First, for those who are asking to know - out of curiosity or medical interest or adoption consideration - the bare bones details of the medication and treatment regimen, here's the answers:
  • Doctor visits: We have a great pediatric infectious disease team at Duke. At first, we saw them once a month. Labs are looking so good now that it's every two months now. It will stretch longer as time goes on, first to every three months and then to every four months. In adulthood, it will likely be every six months. 
  • Lab tests: The main ones are CD4 counts (measures of how strong the immune system is: the higher, the better) and viral counts (measures of HIV in the blood: the lower, the better, with the goal to reach undetectable levels).
  • Medications: Meds are given every 12 hours. In the morning, it's two half pills. In the evening, it's two half pills plus two capsules (which are the same med but two different quantities). So it's three medications given via four half pills and two capsules over a 24 hour period. At the orphanage, children either took their meds or received a beating, and no one taught our dear one how to swallow pills, so our child has the habit of chewing each pill. Dosages and medications will be adjusted as our child grows and develops. 
  • Costs: Over Thanksgiving, we had to pick up a refill. We talked with reps from our insurance company, with our pharmacist, and with a few other folks, making sure everything was in order. They all said it was. Come the day after Thanksgiving... nothing. The computerized insurance processing system at the pharmacy said our child wasn't insured. We had to pay out of pocket - though it was later determined that the insurance co. was at fault and we were reimbursed - a total of about $950 for a month's worth of medication. On a monthly basis, though, the costs are no different from any other prescription on our plan. In fact, insurance companies treat children who are adopted as if they were born biologically into the family: no conditions are considered pre-existing or exempt from coverage. It's as if our child was adopted in perfect health and only later contracted HIV. We are required by our insurance company to have the meds sent via a mail order specialty pharmacy, and they send three months worth at a time. Various state-led programs and pharmaceutical companies offer ways to reduce costs of HIV meds, but we haven't needed that help. 
  • Side effects: None, so far. One makes our precious one tired, but that one is given at nighttime, so it doesn't have any ill effects. 
For those who are asking less about the logistics and more about the stress of all the medical stuff, it's not a big deal. Yes, medication is part of our routine. But it is now perfectly routine for us, not out of the ordinary or weird or anything like that. 

Sure, managing HIV is part of our lives, but it's a small part. 

And it's absolutely worth it.

seizures are scary

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When we adopted Zoe in 2012, we knew the odds were high that she would have seizures. Given the locations of the brain damage causing her cerebral palsy, epilepsy is a common co-diagnosis.

So it wasn't completely unexpected when we had to call 911 during a massive grand mal seizure only four months after flying home with her from Taiwan.

What was completely unexpected? The child seizing... it wasn't Zoe.

It was Robbie. 

Robbie, who had no indications for epilepsy, seized for more than 15 minutes before the paramedics stopped it with meds.

Robbie, who was typical in every way until then, spent Thanksgiving in our local children's hospital.

Robbie, who always slept well, had an EEG that showed abnormal activity during the first few hours of sleep.

His eventual diagnosis was Benign Childhood Epilepsy.

We were told another seizure would come.

We cried.

No, that's not quite right.
We sobbed.

 We rarely slept, waiting for the next seizure.

I started anti-depressants.

It was more than we could bear.

But God.

He was faithful, and He brought friends alongside us through tests and with coffee and in mingled tears.

Since that first one, Robbie has had some partial seizures but no more grand mal ones. We've been on and off a few different meds, but he's been med-free for a year now. We've found his seizures to be so rare and manageable that it's not worth medicating him at this point.

We'll revisit that as he grows, and we'll hope that his doctor is right in expecting him to outgrow his epilepsy around adolescence.

Which probably makes me the only mama who is looking forward to her little boy hitting that stage.

 And we'll pray and trust.


~+~
If you're interested in our posts about epilepsy...

The story of his first seizure:

his diagnosis

on trusting God with epilepsy
hallelujah, all I have is Christ

on aiming for routine to avoid partial seizures
hoping to find a pattern to our lives again

on having an EEG as a small child


hoping to find a pattern to our lives again

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I haven't blogged about epilepsy in a while.

That's because it's been a non-issue. During Thanksgiving break of 2012, Robbie had one grand mal seizure. Several partial ones followed in the next few months. We tried a couple of different meds with little success and then shifted gears, focusing instead on trying to normalize our routine such that his neurological stress was limited.

And it worked.

We knew, when we said yes to this latest adoption, that we might have seizures again.

I thought, if they came, we'd see them in Uganda. As he struggled through jet lag and stomach issues and family changes, I was certain his brain would be thrown out of sorts.

It wasn't.

At least, not enough for seizures.

But all the changes in the home life here, plus snow days throwing off our daily routine, have proven to be too much in the past few weeks.

The partial seizures are back.

For him, it just means that he spaces out and loses control of his bowels.

Eh. With two in diapers, why not a clean up a third from time to time, right?

 We're working to bring normal back. To get the house back into order, as mess stresses him. To stick to a set routine of carpool-gym-playtime (while Zoe has therapy)-lunch-rest-carpool-walk/bike/scooter-TV (while big girls do HW)-dinner-bath-books-bedtime, as changing up the routine stresses him. To make sure he gets one on one time with Mom, as missing that stresses him.

We're praying we can get it all under control before summer starts, keep it under control through the summer, and then help him settle into a new routine in the fall with the start of school.


As we aim for a low stress environment for him, we're also doubling our efforts (ahem, bribery) at retraining his brain to use the toilet... which brings me to a rather funny story from the other day, which seems like a fitting end to a downer of a post.

Robbie ran into my room, where I was resting with a head cold, and said, "Mommy, I went in the potty. Can I get a new squishy reptile now?"

I replied, "Good job, buddy. But once isn't enough. I need to see a pattern."

His response? "Dinosaur, snake, dinosaur, snake, dinosaur, snake, dinosaur, snake, dinosaur, snake, dinosaur, snake, dinosaur, snake, dinosaur, snake, dinosaur, snake, dinosaur, snake, dinosaur, snake. Like that?"

Oh, dear boy. 

 The electrical activity in your brain might be a bit out of whack, but your sharp wit is surely intact.


HIV FAQ: What if friends or family don't understand?

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Today's questions are some of the most common ones. Also, the most heartbreaking. 
What has been the hardest part of adopting a child with HIV?
Do you usually share their status with parents of your child's friends? How is it received, if yes?
Have you lost friends because of HIV?
Thank you for sharing so much information with everything. This is SO helpful! Has there been anyone who hasn't been open to knowing the truth about HIV? If so, how have you handled that?
I'd love to say all of our friends and family members have been willing to learn and have loved us well by asking questions before passing judgment.

But I'd be lying if I said that.

Most people have been amazing. We have gained more friends than we have lost, as people who I didn't even know were following our story came up to us with words of encouragement at church or school.

As I said in my post about church and school, we've already partially disclosed in those areas because people in both settings read our blog. I don't doubt that people talk about our choices: to adopt a child with HIV, to be public about it, to turn the blog over to Q&A for a couple weeks. I'm sure a lot of that talk is positive. I'm sure some of it isn't.

I'm fine with that.

It wouldn't help anything if I wasn't, anyway. I can't control what others say or where they say it or how they feel about it. I can only choose those things for myself.

As far as who we've told the specifics of which child is HIV+, we've limited that info. However, I think most people could guess if they tried. Or they could just ask any of the kids, who would probably answer without hesitation because we haven't taught them that it needs to be a secret.

(Let's remember that their ages are two, almost five, and seven... if we told them it was a secret, they'd probably be more inclined to share. Plus the nuances of good secrets and bad secrets are hard to understand at this age.)

Some people haven't said anything to us about it. I'm cool with that.

Others have told us that they trust us and that's enough for them. They've said that they know we wouldn't put our kids or their kids in danger. While they've thanked us for sharing details about HIV, they've said more info wasn't necessary for them to be comfortable with our child.

A handful of friends have approached us with humility to admit their ignorance in this area and to ask some questions to make sure their kids aren't in any danger. I love that. Please, please, please keep doing that if you're one of those friends who would appreciate a little more knowledge and assurance of safety. I get it; I'm a mom too. Knowing that your children aren't at risk because of mine? That's important.

And a few loved ones with whom we have deep and precious history? They haven't been okay with it. The reactions of two families in particular have wounded us beyond anything we could have prepared for.

And now the screen is all blurry again. What's that wet stuff in my eyes?

 We have grieved. Hard.

But? Just as I can't control what people say, I can't decide how they feel about HIV. I can inform. I can educate. I can advocate.

Beyond that, I can't do anything else. I can't make them exchange stigma for truth. I can't make them see that HIV doesn't define my truly awesome kid. I can't force them to allow our children to play together like before.

I do what I can, even as my heart breaks over what I can't.

For those who are fellow Christians, I do know that the Holy Spirit can convict them of ways they're responding in fear rather than love. I'm praying for redemption and repentance and reconciliation. I'm hoping time will soften their hearts while God protects mine from bitterness toward them. I praying for Joel 2:25, that the years the locusts are eating will be restored one day in a couple specific relationships.

Just as Hananiah, Azariah, and Mishael (better known by the names they were given in captivity: Shadrach, Meshach, and Abednego) testified before the fiery furnace, we know our God is able to change these circumstances and we know He is still God even if He chooses to act in a different way.

(Lest you think we're some sort of Christian rockstars, it still hurts. Others are saying no to us because we said yes to Him. It stings. But I would never, ever, ever, ever trade the two. We are convinced that it is far better to say yes to what God has called us to do and get rejected by friends because of it than to receive a yes from friends while we reject Him.)

We're not responsible for changing the world.

That's God's job.

We're just responsible for being faithful to say yes to follow where He leads us.

HIV FAQs: Why does our pediatrician ask if our child has been around someone with HIV?

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This next question required a bit of research on my part and a really helpful conversation with our pediatrician:
At my child's last well check, I was filling out all the lists of questions and one was "Has your child been exposed to anyone with HIV?" I paused for a moment because we go to church with you and I am pretty sure two of my kids share classes with your newest kids. So I know there is a large chance one of my kids is "exposed." I have read your posts about the rest of you family being safe, exposure is not dangerous and believe you. So I guess my question is why is the pediatrician using this language? Is it ignorance on their part? If I said yes, my child is around someone with HIV, would the doctor treat my child differently?
Nope, not ignorance. (That was my first guess, and I was wrong.) They're actually asking a completely different question than you think they're asking.

The American Academy of Pediatrics is concerned - and rightly so - about an increase in TB cases in the US and the risk that poses to children. Therefore, every year your pediatrician is supposed to have you answer some screening questions to determine if your child might have been exposed to TB, in which case a TB skin test would be placed to make sure your child is TB free.

(TB infection can be active - that is, symptomatic - or latent - that is, dormant. So if your child was exposed to TB, like I was at Zoe's hospital in Taiwan, he or she might have no symptoms yet but might still have a positive TB skin test, like I did when we got our physicals done to be approved for our Ugandan adoption.)

People with HIV are at a much, much higher risk of having TB and at a much, much higher risk of spreading TB if they have it. That's because they're probably not going to have a latent infection for long; given immune system deficiencies, TB is much more likely to become active, especially if HIV is unchecked and untreated.

If you say yes to the question, your doc will ask some follow-up questions, like "Do you know if the person with HIV is being treated for HIV?" and "Does he/she seem visibly ill, particularly with a productive cough?" It's a subjective decision, but based on your answers, you and your pediatrician might decide to do a TB skin test, just to be safe.

That's the only thing that would be different in how you or your child was treated.

For us, because our pediatrician knows our child's HIV treatment plan and health status, we just have TB tests each year for the child who is HIV+. There is no medical reason, unless one of those tests comes back positive, for any of the other five to get TB tests.

(In other words, if our kids don't need TB testing, yours don't either.)

All that to say, your doctor isn't really concerned about whether or not your child is around someone with HIV. She's concerned about whether or not your child might be around someone who might have undiagnosed or untreated TB.

But if he asked, "Has your child been around someone who might have undiagnosed or untreated TB?," you'd probably say, "How would I know that?"

Then the doctor would say, "Well, have you been around anyone in prison or recently incarcerated? anyone with HIV? anyone who has recently been out of the country?"

To save y'all time, they just skip the real question and ask the risk questions instead.

(Here's the full list of TB screening questions from the AAP, if you're interested.)