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Kids and HIV

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For parents living with HIV, when and how do you tell your children about your status?  Read what other HIV+ parents have to say. 

Q: When do you tell your children that you are HIV positive?

I have a daughter in matric. I have hesitated to tell her that both her parents are living with HIV - she is oldest child.

My reason for wanting to tell her now is she is going to varsity soon and I can see she eagerly wants to start having sex next year. I have tried talking telling her to wait a bit because first year is a rough year and you might meet all sorts of people who will tell you what you want to hear.

My question is to those parents who have told their children:  at what age did you tell them, and if not, when do you intend to do it?

My daughter can't keep secrets, so I am even scared she will put it on Face Book - how she is so depressed cause her parents blah blah.  She also has depression tendencies, so I will have to take her for counselling as well. She got tested this year and is negative.  It seems she has not started the sex thing, but I know she will probably start at varsity. I don't know what it is, but our kids (the middle class ones) still think HIV is out there, but in the meantime their own parents live with it. I have not disclosed to any family member of friends - if they know, ah well, they went snooping.

A: I think you should tell her the truth. We all had all the facts when we contracted HIV so contacting a specialist won't help. I did not know anyone positive when I was diagnosed because everyone is hiding, even from their own families.I am not the type of person who hides, I always tell people so that they don't do the same "mistakes" as me. This is your child and not a friend or just a relative; tell her the truth and make it very clear that you tell because you love her and want her to live a full  life without popping pills every day. Give her the facts of life and the consequences of having sex.

Q: When and how do I tell my daughter she is HIV positive?

My 8 year old daughter tested positive a few years ago. She has been on meds ever since and is doing very well. I now face a big dilemma as to when to tell her about her status. On more than one occasion she's asked me why she has to take all these meds that she takes. I simply said it's for pneumonia as she has been previously admitted for that. As some point I will have to tell her the truth, but I just don`t know how and when.

A: I think she's too young to comprehend the magnitude of her situation.  If I were you, I would ''protect'' her from knowing for as long as I possibly can and deal with the issue when she is much older, and even then, it would be if she approached me and demanded some answers on the matter. This is a really tough one. I hope you have had and continue having HIV talks enlightening her, that it is something that can happen to anybody and even if it did, it does not mean that that person is bad or going to die - educate her to prepare her for the news one day.  But most of all, she MUST be secure in the knowledge that you love her unconditionally, that she is special and nothing anyone says or does can take that away from her, that there is nothing on this earth that would ever make you feel any differently about her.

Q: I think my 16-year-old is HIV positive. What should I do?

I am so stressed. I am a very strong suspicion my 16-year-old daughter is positive and I passed it on to her. I know some of you are thinking she could have got it herself, but the signs have been there since birth:  she is a bit sickly, like tonsils flu here and there, but nothing serious so far.

Doctors never saw a need to test her for the virus, however she had to do blood tests recently for something else and the doctor picked up low white blood cells and also the red ones which points in that direction. I need advice on how to handle it.

Should I tell her that we have lived with this thing so long, but I never told her.  I am scared she will hate me for life, it's so unfair. I was one of those who tested negative during the pregnancy but obliviously it was false.  Her father doesn't seem as worried as I am.  I am scared she might commit suicide as she is very emotional.  My worst fear is, when I die I will leave her all alone on this earth to suffer just because of her parents.

A: Your best approach is to find a way to test, and take it from there. I pray that your fears will be put to rest. Professional help will come in handy here.

The bottom line is there is never the ' right time' for anything. Whatever issue at hand will bring out a certain reaction and when it's something we have been ' keeping a secret', the chances are the reaction will have a much more ' devastating' effect on the receiving party. I can only imagine how the past 16yrs have been for you.

It's hard enough for us adults to come to terms with the condition we live with - as for a 16 year old, especially if she's still a virgin, I understand your fear. You know your daughter better and if you feel she could commit suicide should she find out that you could have passed this on to her, then you truly have a huge task ahead.

Q: I'm not giving my baby her meds at the same time.  Can this cause a problem?

My little one is 7 days old and is taking Zidovudine. There are always people in the house which make so it hard to give meds on time. Will this prevent the medication from not being effective if we don’t give her meds at the same time, perhaps an hour later than scheduled? Also is it safe to give entress-druppels to the baby while taking these meds? She is a healthy with no complications, she's just been crying a lot at night for the past 2 nights.

A: It is important that the baby takes the medication every 12 hours to be effective in preventing HIV transmissions (according to my gynae and Paed). You have to try by all means to stick to this 12 hour interval. When I had my baby about 18 months ago I had a similar problem because there were people around. I suggest you pour the zidovudine in another bottle and label it "vitamin". When it is medicine time, take the baby and say you are going to change the soiled nappy. Hope it works. As for gripe water and entress, I don't think there is a problem. I used entress in his bath water and he sometimes drank gripe water, but not at the same time with zidovudine. My baby tested negative.

Q: How do I explain HIV to a 10-year-old?

How do you explain to a 10-year-old that his or her cousin died of Aids?  My daughter keeps on asking all the time when people pass on.  At times I do answer, like when a person is old, or has been in a car accident but when it comes to HIV, I always say stop asking too much, the person was ill. Knowing that I have HIV, it just hurts me when she asks. I am aware she knows about HIV, but I just can’t discuss it with her. How do I?

A:As much as it's hurting you, the best place she can learn the truth about HIV is from you. Start by asking her what she knows about HIV and then teach her bit by bit what it means, how it works, etc. You don't have to tell her about you, but she needs to know about it.

Q: How many times should I have my baby tested?

I' m HIV positive and recently gave birth to a son. I gave him syrup as advised for 6 weeks after his birth. He was tested at 7 weeks, the PCR results were negative. I would like to know if I still need to test him again. My understanding is that PCR after 6 weeks is accurate and therefore no need to test. He's not been sick since birth, but I' m now a bit worried because he is losing the hair he had at birth. It comes out when we bathe him and also when we comb his hair.

A:I had my baby tested at 8 weeks and again at 6 months for my own peace of mind. The paed said chances of the baby testing + at 6months were slim if the initial tests at 8 weeks were negative. So I don’t think you should worry too much about the results coming back differently second time around. And all newborns lose that first hair, it's normal.

Q: My child has shingles could he be HIV positive?

My 7-year- old has a strange sore on his stomach. My mother in law took him to the clinic today. The nurse gave her a letter saying me and my husband should come see her. She mentioned that my child has shingles and a soft waist line; I don't know what that means. What could this mean, I am scared as hell could my child be positive? If my child turns to be positive I will never forgive myself for not protecting him. I have two more kids who were born when I was already positive and they are both negative. How will I explain the situation to him if he turn to be positive?!

A:These days, shingles is regarded as one of the symptoms for HIV infection. If you go to any doctor for shingles treatment, the doctor will most likely recommend that you take an HIV test.
But not all people who suffer from shingles have HIV. However, shingles is more prevalent to people infected with HIV. However, you should not press panic buttons as yet. Wait until you speak to the nurse and then take it from there. Even if your child turns out to be HIV pos, do not be dismayed, help is at hand. With the availability of various treatment options, HIV is not a death sentence anymore.

Q: My newborn does not want to nurse, what can I do?

I have new born and have chosen to breastfeed exclusively. After 6 days the baby doesn't want to have the milk directly from my breast, but if I pump the milk and give the baby from the cup it drinks it. Now my question is if the baby continues to do this (not wanting milk directly from breast) can I still continue with the pumping or are there risks with this method. I know you may not be in the position to give me advice and I will ask the doc only next week when I see him, but for now from your experiences is this method risky or not?

A: I tried with my baby when he was born, used the best breastfeeding experts to help, nothing helped. I even tried day in and day out when I got home, he refused. It is not as easy as you suggest, I realised a lot of mothers had the same problem when I started researching for solutions. He was quite comfortable with the bottle, regardless of whether it was formula milk of my milk. New mom, I personally haven't heard of any risk in pumping, however the downfall is that the milk dries up quickly because more milk is produced when the baby sucks. My advice is go see your doctor now you - need not wait for next week as this is critical.

Q: My 6 week old has to be vaccinated, but the vaccine is not available at government hospitals what should I do?

My baby is 6 weeks old and he will soon be tested for HIV as he was on syrup, now am told that he needs to take a vaccine called preverna.  The funny thing is that clinic told me it's not easy to get this vaccine in government hospitals, they suggest that I use medical aid.  Please advise if you know anything about this, how come this is not available to government hospitals?

A: The vaccine is available at most private hospitals and of course. It is for pnemococcal disease, every child have to get two shots of it and a booster dose within the first 24 months. They usually vaccinate the first shot at 6 weeks but you can do it anytime sooner even after 6 weeks.  Yes, it is available as a private vaccine in most pharmacies for that amount. I know government hospitals are out of stock regularly on this vaccine, so I advise you to take your child to any private hospital (you need to phone and make an appointment) to get this vaccine.  It costs R60 and it doesn't matter where your child was born- any private hospital can help you as they get their supply from government as well.

Q: I am so stressed out about having my baby tested, that I'm losing weight.

I am on the fourth week of giving my baby the syrup. I am starting to panic and stress at the thought of the upcoming test after the 6weeks has ended. I have lost so much weight in these 4weeks, my family has given up on the breastfeeding issue but now they on my case about de weight issue. It's like it doesn't end, I've been stressing a lot and I am just tired.

A: If you follow the instructions there is no way that you could go wrong, I have done this twice already, and it's going to be fine, its normal to stress but rest assured it's still going to be OK.Continue to eat well and take your medication, the weight will sort itself out once you are at peace.

(Health24, July 2011)

Read more:

Children affected by HIV/Aids

HIV Peer Forum

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