Living with HIV: From the Parents

August 7, 2017 August 2017 Feature - Infectious, HIV, HIV Q and A, Infectious 0 Comments

As we see more and more HIV+ children become available for international adoption, we thought that it would be beneficial to hear first hand experience on parenting this need. So we asked prospective adoptive parents what they really wanted to know about having a child with HIV; then posed those questions to both adoptive parents and their HIV+ children.

This first post in a three-part series focuses on the questions most frequently asked by APs and the parents’ answers. We hope you find this series to be both informative and perhaps a bit heartwarming – wait ’til you hear from the kids in part two!

Part One: From the Parents

1. What is HIV?

An infection that affects the immune system if left unmedicated.

A virus that if left unchecked affects the body’s ability to fight off infections. It can lead to a severe compromise of the immune system.

Blood borne pathogen; extremely fragile outside of the human body.

Immune deficiency disorder affecting the white blood cells.

A blood disorder.

A virus that makes it hard for the body to fight off infections.

Human Immunodeficiency Virus.

It’s a retrovirus that attacks the immune system.

HIV is a chronic illness. The virus can attack the immune system leaving a person susceptible to illness. However, the virus can easily be suppressed with medications, allowing an individual to lead a normal life, and also eliminating the risk of transmission of the virus.

A virus that’s legacy has been fear and stigma.

Human Immunodeficiency Virus It’s a retrovirus that attacks the immune system.

A disease that affects and weakens your immune system.



2. What is the day to day like caring for someone with HIV?

The biggest thing day to day is making sure that the kids take their medicine. They take three pills, twice a day, and they need to eat them with food. That’s it.

For us it means double checking with my daughter before I go to bed to make sure she took her one pill of the day, visiting her specialist twice a year. And getting labs drawn twice a year too.

Just reminding them to take their daily meds.

Daily med(s) but otherwise not demanding.

Same as with other children other than my daughter with HIV takes meds.

It is easy caring for my daughter with HIV. I remind her to take her meds twice a day and that is it. We visit her infectious disease physician every three months.

Three medicines in the morning and three medicines at night. Done!

Pretty much exactly like that of people who are HIV negative! For us, the only difference is taking some pills at bedtime.

Fairly doable, executive functioning issues and learning disabilities resulting of AIDS are difficult.

Just like caring for anyone without the virus, except taking medications with breakfast and before bed. Sometimes the stigma can be hard, and we have to adapt our day not because of the illness, but because of the need to keep his illness confidential.

Honestly I don’t even think about it every day. My kid is on daily meds. Otherwise its no different.

You need to remember the medications, and that’s it in terms of day to day.

Wake up and take a pill!


3. How many medications do they need to take and how expensive are they? What are the side effects of the virus and medications?

They take three medications, in the form of two types of pills. With assistance cards and insurance, the medicine costs about a hundred dollars a refill until we hit our deductible. After that it’s about $8/refill. My kids have stomach issues that I believe are side effects of the medicine, but that is mitigated by taking it with food.

One pill daily. Covered by insurance and daughter’s secondary insurance. Unsure of the cost, actually! No side effects currently.

Two pills once a day. Would cost about $3000/month without insurance. With insurance $130/ month. With Rx coupon card $0! Side effects have been very minimal for my daughter

She takes two meds per day. There is an option for a single daily pill. The cost is manageable thanks to federal programs. Side effects of the virus are zero; of meds are zero.

She takes one pill a day. The state pays for it. She is undetectable so doesn’t experience side effects from HIV. The medication sometimes makes her stomach a little upset but it doesn’t last long.

She takes two medications twice a day. We have insurance so the co-pays are less than $20 a month. Side effects are decreased immune resistance if the virus is active in the body. If social stigma is a side effect that is a major one that we have faced. Medications can effect liver function.

Three medicines, two times a day. Our son’s medications are completely covered by our insurance (Tricare).

My daughter currently takes two different pills, once a day. At one time she was on three different meds and one was a liquid that needed to be refrigerated. So that was a little more to manage. For us, our insurance covers most of the cost of meds and the manufacturers provide us with copay assistance cards. So for us we pay nothing out of pocket for meds.

Three and four pills a day, free in Canada and no side effects.

At the moment we are still on pediatric dosing. He takes 2 pills in the morning and two half pills at night. The pills contain the medications nevirapine, zidovudine, and lamivudine

He is on three meds (combined into two pills) once a day. Our co-pay for both is about $60 per month.

Hmmm….She takes five medications. two are for HIV, three are for things that are not HIV but that are likely to be caused by the HIV virus. It’s a tangled web. The side effects of the virus are numerous–cognitive, ADHD, asthma, etc.

One pill a day, one time a day. We are on a co-pay assistance program so it costs us nothing!


4. What is the life expectancy of someone with HIV?

Close to normal, as long as they stay on their meds.

Normal.

Normal life expectancy.

Full healthy life, as long as they take their meds.

Normal life expectancy.

Our infectious disease physician said it can shorten a normal lifespan by only a few years if one takes meds as prescribed.

The same as someone without HIV as long as they have continuous access to medication.

Basically, near normal life expectancy! One of our doctors treats an HIV patient who is in their eighties!

Almost the same as an healthy individual.

We are treading on new soil with these kids living on antiretrovirals with undetectable viral loads. As far as we know, life expectancy is near normal – with adherence to medication.

As long as someone without HIV.

My understanding is that it is nearly parallel that of a person without HIV.

On medication, the same as you and me!


5. I always see HIV described as an “easy” need – what is the worst case scenario in terms of health issues that your child might have?

The biggest worst case scenarios for us are the interaction with HIV and other diseases. One of my kids also has Hep C, and the combo of the two will shorten her life span. One of my other kids has psoriasis, and the HIV interferes with the treatment for it. So our worst case scenarios are about HIV interaction with other diagnoses, rather than the HIV itself.

If my daughter decided to stop taking her meds and allowed the virus to go gangbusters without seeking treatment, then eventually she could develop AIDS. Otherwise, nothing.

Processing disorders and some mental challenges most likely as a result of her virus

As long as she takes her meds there is no worst case scenario. Without her meds she will eventually die of AIDS related complications.

In our situation the worst we’ve experienced has not been medical problems but rather fighting against stigma. With all the meds available today I’m not aware of major problems related to HIV in people who are on meds.

The worst health issue would be for her cocktail of medications to not work and her viral loads become detectable.

Just like with other chronic conditions, the health issues vary widely. The biggest thing we face is stigma and discrimination.

Worst case, I believe, would be if she developed resistance to her current drugs and we struggled to find another that would work to keep her undetectable.

Learning disalitilies, executive functioning issues, weakened immune system, STIGMA…

My biggest worry is when my son becomes responsible for his medications. Our specialist tells us this is the most challenging time, combined with the developmental stage of the teenage years, which can bring rebellion and other life choices that may make taking medication difficult.

Chronic lung or cognitive issues.

Death. That’s the worst case scenario, of course. The real worst case scenario is that we lose access to quality health care and she becomes resistant to medications due to lack of attention.

I’m not a medical professional, and maybe I’m optimistic but we have a great team of medical professionals so I don’t see a worst case scenario.


6. How is the virus spread? Am I putting my other kids at risk by adopting an HIV+ child?

The virus is spread by sex, or direct blood to blood contact. It would require and open, actively bleeding wound to come into contact with another open wound. Our children’s viral loads are undetectable, which makes the risk of transmission even smaller. Other kids are not at risk.

Blood borne virus. Only transmitted via sex, sharing of drug needles, or from mother to child – through breastfeeding for example. In no way are family members at risk.

Virus is only spread through sex, needles, childbirth. There is virtually zero risk, especially when viral load is so low, of transmitting in a normal home environment.

An HIV child who has been on ARVs for years has a nearly undetectable HIV count. Those around them are entirely safe. No one is at risk.

Sex, breast milk, dirty needles and blood to blood contact but even then you’d need fresh blood of the infected person going into a fresh open wound of the other, and if that even actually happened you could go to the hospital and take meds to prevent being infected. And also if the positive person is on meds and undetectable, it is very unlikely to even be passed on through sex. No, your children are not at risk of being infected

The virus is spread through sexual contact, breast feeding, intrauterine, and by blood transfusions.

Sex, needles, and breastfeeding.

HIV is only spread through breastmilk, sharing needles, and sexual intercourse. None of that is going on in my house, so there is no risk to my HIV negative children. Also, my daughter is undetectable, so there is basically a zero percent chance she could spread HIV even through the actual ways it’s transmitted.

Through blood and sexual intercourse. Other children not at risk.

The virus is spread only through risky behaviours… so I don’t see how other children could be at risk!

Sex, direct deep blood to blood, and only if the person has a high viral load. Undetectable means un-transmittable. There is no risk to others if they are undetectable.

The virus is spread by sexual activity, sharing needles, childbirth and breastfeeding. So long as your children aren’t expecting to do any of those things, they’re fine.

Sex, needles, breast feeding. No risk for anyone unless you are engaging in one of these activities!


7. Will my HIV+ child be sick all of the time?

Absolutely not.

Once the virus has been suppressed through meds, no. They will be super healthy.

No. My daughter is actually probably one of the healthiest of my four children.

They will always have HIV, but they are not sick.

My daughter who is positive is healthier than some of my other kids, she gets a few colds a year but nothing more than everyone else gets.

No, your HIV+ child will not be sick all of the time. My daughter is rarely sick and when she is it is a common cold or stomach virus.

No! We have 6 children and our positive child is the healthiest

My HIV positive daughter is the healthiest in our house. She rarely gets sick and when she does she recovers very quickly!

First year both of them were really sick but they are fairly ‘typical” now.

My son rarely even gets colds!

Nope. Mine is the healthiest of my kids.

Probably not. My 10 year old has missed more school for doctor’s appointments than illness.

Not if they are on the medicine.


8. Do I need to tell school and church about my child’s positive status? Are there restrictions on athletics or contact sports? How do you approach having a child with HIV with other parents? Is there anything special we should do or have at our house if we were hosting a play date?

You don’t have to disclose anything. We do tell sports teams, and as my children make friendships we tell the parents. We don’t want anything to be a huge secret, or came out later and cause issues. We don’t do anything special when hosting a play date. We do make sure our kids have bandaids and gloves available when playing sports.

Disclosure is something you get to decide. Federally you are protected from having to disclose in any situation, except for sexual partnerships. You do not have to tell church, school, neighbors, family, etc. Nothing special is needed on hand aside from a first aid kit, which hopefully you have in your home already.

We do not disclose to school. We have disclosed to church youth leader because of overnight trips, but we leave it off all forms. For athletics our PID (Pediatric Infectious Disease Doctor) has managed all physical forms and said there is no need to disclose. We do not mention it at all to other parents.

No one else needs to know or should know. There is too much stigma and ignorance associated with HIV. Disclosure is the legal privilege of our child.

You only legally need to tell sexual partners, however obviously it’s smart to tell your doctor. Disclosure is a hugely personal choice and largely depends on each family’s individual circumstances and preferences.

No, you do not need to tell anyone your child’s HIV status. That is your child’s personal information to share if and when they wish. I do not disclose to other parents. Nothing special any other parent should have. My child is to be treated as any other normal child. Obviously the standard is to use universal precautions when dealing with any injury for any child.

No! No! No! We are open about HIV and answer questions with confidence and comfortableness.

We do not disclose our daughter’s status. We feel it is her choice to make. In our area, the rules for school state we should disclose. But our clinic told us that it does not state WHEN we need to, so we can disclose when she graduates! We just follow universal precautions at our house and when out. Its nothing different than what you should do for all people.

NO.

Sleepovers can be tough due to medications. My son plays indoor soccer, swims and does taekwondo. His coaches don’t know. I have to admit, I don’t know if I would put him in to hockey or tackle football,but I don’t see any reason why you couldn’t. Just not our thing. As for friends, we don’t share.

Disclosure is voluntary. No restrictions on activities. We selectively disclose and tell close friends. That is so nice to ask if you need to do anything different – but you don’t. The best thing you can do is treat my kid just like any other kid.

No. You don’t have to tell anyone except for medical providers. Many people end up choosing to tell some people. Because my daughter’s ADHD is so bad that I can’t count on her to take her medications without reminder, I do tell other parents about her medications. They remind her on sleepovers. They don’t have to know her diagnosis to do that (there are pills for other things in there, too.) but as luck would have it, she only has two friends that she’s close enough with to have a sleepover with, and both families already know due to my closeness with the parents.

Nope. I carry a set of gloves in my purse. We have gloves at home. I would educate my child, if he/she gets hurt and I’m not there, handle the band aids themselves. We keep gloves in our cars too!


9. What is the most difficult thing about parenting a child with this condition?

Talking to them about how they got it, and what happened to their birth parents. Talking to them about their future choices for relationships and children. To be honest, the HIV has been a very small piece of parenting kids that come from loss and hard places. Their background and what led them to us is much more difficult for them, and for us to know how to parent them through with love and strength.

The stigma still associated with it, and wondering what it will be like for my daughter to disclose to a significant other some day. She knows it’s her choice and has, on her own, only disclosed to one person so far… an elementary teacher.

Fear of stigma and helping her manage that as she navigates teen and you adulthood.

The ignorance of others, and the social stigma attached to it.

Seeing your children hurt by ignorance of other people. In seven years we’ve only experienced this once though public schooled children may deal with this more often

The social stigma attached has been the biggest issue for us. We have been uninvited to family functions due to us adopting our HIV+ daughter.

The stigma that he faces and will continue to face.

Our daughter has an intellectual disability. There’s no way to know if the HIV caused it or not. But for us this is the most challenging part of parenting our daughter.

Stigma, rejection by family members.

The stigma. If I had a child with another condition. Let’s take diabetes. My friends would want to learn about it to help us. There would be a multitude of Facebook and support groups to join, so and so’s friends son would have diabetes too. But with HIV we don’t have that. We have private groups. There are so few kids who have hiv and fewer whose families share.

The misinformation and the stigma.

Stigma. Stigma. Stigma. Stigma. Stigma. Stigma. We have been challenged in day care (a nurse at our hospital outed us to the daycare. Yeah, she lost her job but the way we were treated meant we lost the daycare too. We have lost a church, friends, etc. The burden is 80% stigma, 15% worrying and 5% the virus.

Blood draws every 3 months if you think that’s difficult.


10. What do you want people to know about HIV?

It is something that we live with, but it is a small part of who my children are, and who we are as a family. It is a real piece of their lives, and comes with it’s own grief and complication, but it is not their identity or their future.

It’s not scary. It doesn’t affect your quality of life or life expectancy. It’s never been transmitted during normal family life. There are state programs that will cover the cost of meds and lab work.

It is a manageable disease and there is no need for fear.

It’s not a death sentence for carriers. Nor does it spread like Ebola. These children, properly medicated, will live full healthy lives, get married, and have children who are HIV free. Federal programs that help offset the cost of these meds are essential for families, and we are grateful for the help.

It’s soooooo not a big deal if you live in a country where you have access to meds.

That it is NOT contagious through casual contact. That there are medications which if taken correctly fully keep the virus at bay and out of one’s blood stream.

It is not a threat.

It is a manageable chronic condition. There is basically no chance that our daughter can or will pass HIV on to anyone else. It is way less communicable than most common viruses!

Real facts around transmission.

Please trust reputable sources for your education. There are many rumors, and untruths about HIV. Don’t trust everything you hear.

That it is nothing to fear.

It’s 2017. The prognosis and information about HIV has changed drastically from the 90s. Become informed and don’t be afraid.

It’s so taboo, but seriously not a big deal!

Additional resource: HIV+ China Adoption Information and Advocacy Facebook Group

– guest post by two mamas who are parenting children who are HIV+



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