Taking medication: A factsheet for parents/carers looking after children with HIV

Introduction

The medication used to treat HIV is called Highly Active Antiretroviral Therapy (HAART). HAART usually includes a combination of 3 or more anti-HIV drugs that only work properly when they are taken together every day. The medication reduces the amount of virus in the blood, so that the immune system can recover and the CD4 count (fighter cells) can increase. Missing a dose or taking it late can mean that:

• The viral load (amount of virus in the body) can increase and the CD4 count (fighter cells) decrease. This will put your child at risk of becoming unwell.
• The virus can become "resistant" to the treatment. When taken properly, the medication fights against the virus. But if there isn't enough of the medication, because a dose is missed or taken late, the virus can become strong again and the medications will no longer work, so new drugs are needed. This is why it is so important to take the medications regularly and on time.

What is being 'adherent to treatment'?

Being 'adherent to treatment' means that you are taking the medicine and not missing doses. It is important that you are always taking the right amount of the medicine (if it says 2 tablets, not just taking 1), the right way (with or without food), at the right time for the medication to work properly.
Taking medicines for HIV can be difficult. Your child might feel tired of taking the tablets or liquid several times a day, and your busy life and your child's daily activities (school, playtime, holidays) may not fit in with the medicine schedule. This might stop you from remembering to give the medicine to your child.
Taking medicine in front of other people can also be a problem especially if friends or family do not know your child has HIV.

The medicine may have side effects that can make your child feel worse for a short time. But it is important to keep in mind that this medicine keeps you and your child well and that only good adherence to treatment will help keep the amount of virus in the blood very low or 'asleep'.

What does 'side effect' mean?

Side effects are when the drugs have other effects on the person taking them, apart from fighting the virus. There is a small chance your child could get side effects when taking anti-HIV medicines. These usually are things like a headache, upset stomach, rash or diarrhoea. Most of these side effects go away over time. However, any side effects of a medicine may make your child not want to take their medication. It is very important to tell your doctor or nurse as soon as your child experiences any side effects from the medicines.

What can be done about side effects?

Most side effects from anti-HIV drugs disappear over time, this is because the body gets used to the medication. Although it helps to know what to expect, not everyone gets the same side effects from a medicine; some people don't have any. If you are worried, talk to your child's doctor, nurse or pharmacist. Do not stop your child's treatment before talking to them as they can probably help.

• Your child's doctor can prescribe some other medicine to take with the anti-HIV drugs that will stop or reduce side effects
• Your child's doctor and nurse can also give you some tips to help you deal with side effects
• It is important to tell your doctor or nurse if any of the tips work or not and if your child is still feeling side effects.

What else may stop anti-HIV medicines from working well?

• Other medicines can interfere with the anti-HIV medication. Make sure you tell your child's doctor, nurse or pharmacist if your child is taking any other medicine; even ones you can buy at the chemist and supermarket (e.g. herbal medicines or vitamins)
• Alcohol and recreational drugs (drugs that people take socially) may also affect the way anti-HIV medicines work, so if you think your child us taking these, let the doctor or nurse know.

Missing a dose

Sometimes you or your child may forget to take the medication, or your child may be sick.

• If your child is sick within 1 hour of taking the medicine or if you have seen the tablet or capsule in their sick, give your child another dose. Write down any missed doses with the date and time and tell your doctor or nurse at your child's next visit to the clinic
• If your child forgets to take the medicine, give it to them as soon as you remember, unless you only remember when it is nearly time to give the next dose. If it is nearly time to give the dose again, don't give them a double dose, but you might want to give the next dose earlier.

Always follow the instructions

• Some medicine needs to be taken with food, some before or after mealtimes and some on an empty stomach (i.e. 1 hour before or 2 hours after eating). Always follow these instructions and ask your doctor or nurse if you are not sure. Keep a snack and bottle of water with you when going out and an extra dose of medicine just in case.

Top tips to help you remember to take your anti-HIV treatment

• Before your child starts taking medication, talk to your child's doctor or nurse about:

• Make a plan for medicines and daily eating times that will work for you and your child. Your doctor, nurse or pharmacist can help you do this
• Use reminders (e.g. alarm clock, mobile phone, timer, chart, diary, notes around the house) to help you remember
• Children love stickers, so use a sticker or reminder chart and involve your child from the beginning in taking their medicine
• For liquid medicines, ask the pharmacy to colour code the bottles with matching oral syringes (where available). This helps make giving the right dose easier. Put the same colour for the medicine on the chart or checklist
• Only use medicine spoons or oral syringes to give liquid medicines; they will give the exact amount
• Use a weekly pillbox to fill once a week and keep in a safe place. Ask your doctor, nurse or pharmacist to give you one. Fill the pillbox up a week in advance and take a day box with you when you go out
• Always read the written instructions on medicine containers to make sure your child is taking the right amount at the right times each day. If you don't understand it, ask you nurse, doctor or pharmacist to help explain it to you
• Do not run out of medicines. Contact your clinic at least one week before the medicine will run out if you think you will not have enough medicines until your child's next clinic appointment
• If your child has to go in and stay in hospital, bring your child's medicines with you.

Top tips to help your child take medications

It can be hard for your child to take their medicine, but it is really important they do otherwise they could become ill. Be consistent – always say the same thing – and have a matter-of-fact attitude to it. You expect your child to take the medicine just as you expect them to put on a coat before going out in cold weather, or brush their teeth in the morning. Never ask if they want to take their medicine. Be firm in telling your child it is time for medicine and then show them how pleased you are that they have taken their medicines.

• Make pill-taking part of daily routine (e.g. brushing teeth, washing face, take your pills)
• Try to give the pills at same time and in same place (where possible)
• Give some control to the child (e.g. which tablet they want to take first)
• Use stories/songs to make the process a fun experience
• Be positive with your child so they get a sticker for a chart or see how pleased you are
• Avoid power battles, punishments and threats. This will make the medicine a very negative thing
• Avoid tricking the child with food (e.g. hiding the tablet)
• Use food to reduce taste and help with swallowing (e.g. jelly, milk, cold drink, ice cream, peanut butter) but make sure they know the tablet is there. Involve your child in choosing the type of food s/he wants to hide the taste of the medicine in. Sucking an ice cube or a mint sweet before can disguise sharp taste of medicines
• Avoid thick liquids that could slow down the swallowing process
• Some tablets can be crushed or cut and mixed with food or liquids, but ask your doctor, nurse or pharmacist first. Get help if your child has problems because of the size of the tablet
• If medicine is mixed with food (e.g. yoghurt), only use a small amount of food so that your child will take all of it
• Medicine should always be given under adult supervision. Stay with the younger child until s/he has swallowed all the medicine. As your child gets older and more independent supervise from a distance and encourage them to take more control of their medication
• If your child refuses to take the medicines, stay in the room with the child, alone and most importantly remain calm. Your child will only be allowed to leave the room and go back to play only after taking the medicine.

How can I tell if I need support with my child's medicines?

If you answer "yes" to any of the following questions, you should talk to your doctor or nurse and ask for help.

• Do you forget to take your medicine or to give it to your child?
• Do you forget to follow instructions about the way to take the medicines (e.g. with food)?
• Do you ever give or take the medicine at the wrong time?
• If your child complains, do you just not give them the medicine?
• Do you forget to get more medicine before you run out?

Taking Highly Active Antiretroviral Therapy will not cure the HIV infection, but it will allow your child to remain healthy for a long time. Your doctor and nurse know that it can sometimes be difficult to take anti-retroviral medicines every day, so please ask them for help if you are having problems.