HIV infection in children
The course of the HIV infection is usually similar in both adults
and children. However, 10% of children suffer from a particularly severe
type of infection characterised by a rapid development of immune deficiency
and opportunistic infections. This article also deals with the issue of
diagnosis of HIV infection in new-born babies and with vaccinations.
- Approximately 2,000 children are thought to carry HIV in France. In
90% of cases, the course of infection is identical to that of adults. In
the absence of an appropriate treatment, a long asymptomatic period precedes
the progressive weakening of the immune system and the appearance of opportunistic
infections.
- The same infections are seen as in adults, with the exception of Kaposi's
sarcoma, which is very rare in children. Some more specific signs have
nevertheless been reported :
- - recurrent bacterial infections (sore throat, bronchitis, lung infections),
unrelated with the evolution of the CD4+ count. A daily dose of co-trimoxazole
(Bactrim), used to prevent pneumocystis carinii pneumonia, often also leads
to a marked decrease in the number of these bacterial infections.
- - interstitial lymphoid pneumonia, a lung disease which impairs breathing
and seems to be due to inflammation linked with T8 cells. Its course is
variable and severe forms can be treated with corticosteroids.
- - delayed growth, the result of many possible causes, can be detected
and treated by regular medical follow-up.
- Most children with this "classic" type of infection reach
the age of 10. Their long-term risk of illness as adults is unknown.
-
- The 'rapid progression' disease state
-
- In approximately 10% of cases, HIV infection in children is characterised
by a particularly severe progression of the disease, caused by the rapid
appearance of a profound immune deficiency which opens the door to opportunistic
infections. The most frequent of these infections are related to candida
albicans, pneumocystis carinii, bacteria and the cytomegalovirus. Neurological
disturbances, related to brain lesions specific to this 'rapid progression'
state are often seen and lead to psychomotor development disturbances.
- It is critical for HIV infection to be diagnosed and managed as early
as possible. Anti-HIV treatment helps to improve these children's condition
and reduce their symptoms. It is difficult to explain why a &laqno; rapid
progression » of the disease occurs in some children. This is probably
related to an early infection of the foetus during pregnancy (and not at
birth, which occurs in most of the &laqno; classic » forms of infection).
The type of virus, the amount of viruses transmitted and the health status
of the mother at the time of transmission of the virus could also play
a role.
-
- Vaccinations
-
- The questions relating to vaccination are identical to those which
apply to HIV positive adults (See Remaides 23, p 34-35). &laqno; Inactivated
» vaccines, i.e. which do not contain 'live' virus or virus fragments
are safe, even for children who are HIV+. These include the vaccines against
diphtheria, tetanus, whooping cough, poliomyelitis (injectable), pneumococcus,
Haemophilus influenzae, flu and hepatitis B. The only concern to these
vaccines relates with their actual efficacy when children are suffering
from profound disturbances of their immune system.
- Conversely, some &laqno; live attenuated » vaccines (e.g. oral
poliomyelitis, BCG, rubella-mumps-measles) are a cause for some concern
since they contain live viruses which have been modified so as not to cause
infection in persons with an intact immune system. The injectable &laqno;
inactivated » poliomyelitis should be used instead of the oral poliomyelitis
vaccine. The rubella-mumps-measles vaccine does not pose a major risk since
the virus contained in the vaccine does not persist in the body. However,
it should be avoided in children with profound immune deficiencies.
-
- How to know if a new-born child carries HIV
?
-
- The mother's antibodies are naturally transmitted to the child during
pregnancy: all children born of an HIV-positive mother are HIV-positive
at birth. This does not mean that they are infected by the virus, only
that they have their mother's antibodies in the blood. Later, when they
are approximately one year old, children lose their mother's antibodies
and make their own. Thus, only HIV-infected children will still have antibodies
when they are older than one year of age. A serology test can therefore
only be reliably performed at least 12 months after birth. More recent
methods detect the virus in the child's blood. In France, these tests are
systematically performed. In most cases, they will detect infection from
HIV between one and three months after birth. Two positive tests are required
to confirm a diagnosis of infection. If one of two tests is negative, another
test will need to be performed one month later to be able to conclude.
Conversely, two negative tests from two separate samples taken in a child
one month or older are an almost certain proof of non-infection. The &laqno;
classic » antibody test will nevertheless be necessary at the age
of 15-18 months to be sure of the absence of infection.
-
-
- Some French hospitals with specialised wards
for children:
-
- Paris
- Hôpital Necker-Enfants Malades
- 149-161, rue de Sèvres
- phone 01 44 49 48 24
-
- Hôpital Armand-Trousseau
- 26, avenue du Dr-Arnold-Netter
- phone 01 44 73 60 62
-
- Hôpital Robert-Debré
- 48, boulevard Sérurier
- phone 01 40 03 33 81
-
- Nice
- Hôpital Lenval
- 57, avenue de Californie
- phone 04 92 03 03 92
-
- Hôpital de l'Archet
- Route Saint-Antoine-Ginestière
- phone 04 92 03 61 71
-
- Marseille
- Hôpital Timone-Enfants
- Boulevard Jean-Moulin
- phone 04 91 38 50 26
-
- Tourcoing
- Hôpital G. Dron
- 135, rue du Président-Coty
- phone 03 20 69 46 05
-
- Toulouse
- Hôpital La Grave
- Place de l'Ange
- phone 05 61 77 78 33
-
- Besançon
- Hôpital de Besançon
- 2, place Saint-Jacques
- phone 03 81 21 85 33
-
- Rennes
- Hôpital Sud
- 16, boulevard de Bulgarie
- phone 02 99 26 71 62
-
- Nantes
- CHU de Nantes
- Hôtel-Dieu
- Place A.-Ricordeau
- phone 02 40 08 33 33
-
- Treatments
-
- Treatments in children
-
- Anti-HIV treatment in children is similar to that of adults. The same
drugs can be used once their tolerability in children is established. However,
their use can be made difficult due to the absence of formulations adapted
to young children (syrups, small capsules, etc.) As a rule, a treatment
shown to be efficacious in adults is expected to be efficacious in children.
In other words, except for the 0-18 months age range which may require
specific studies, efficacy trials in children are of little use since they
will replicate results obtained in adults.
- However, tolerability studies in children are necessary. Unfortunately
their cost is very high given the limited benefit they can yield, and many
pharmaceutical firms &laqno; drag their feet » when it comes to developing
drugs in children.
-
-
- Treatment at birth
-
- AZT (Retrovir) in an HIV-positive woman has been shown to decrease
the risk of transmitting HIV to the child. Combination therapy with two
drugs may be more efficacious and is under investigation (in particular
Rétrovir + Épivir = AZT + lamivudine). Things are more complicated
for women already on treatment prior to becoming pregnant. New official
guidelines deal with these issues (see p 10-11).
- To further reduce the risk of infection, all children born to an HIV-positive
mother receive a 6-week course of treatment (Rétrovir monotherapy
until recently, but currently Rétrovir + Épivir). Treatment
will subsequently be stopped if the child is not infected by HIV. If the
child is an HIV carrier, treatment will be adapted based on his/her clinical
status and viral load.
-
- Medical follow-up
-
- A doctor must be seen every month during the first year to monitor
the effectiveness of the treatment (tolerability, CD4+T4 count and viral
load), to diagnose possible illnesses and to monitor the nutritional status
and growth of the child. After one year, the doctor may be seen only once
every three months.
-
-
- Viral load
-
- Viral load can be measured at birth in a few children. These children
are thought to be at a higher risk of a &laqno; rapid progression »
of their infection (see p 12-13) and a &laqno; stronger » treatment
(usually a triple combination therapy) is usually started immediately.
In most children viral load can only be detected between 1 and 3 months
of age and can, at that time, reach very high values. This is similar to
the &laqno; primary infection » of adults (see &laqno; how to treat
a recent contamination » in Remaides 25 p 14-15). Some doctors believe
that all children at this stage should receive a triple combination therapy.
Other doctors are of the opinion that in children, as in adults, the long-term
consequences of such an early treatment are not known. Ongoing investigations
should shed some light on this debate. When no treatment is given , viral
load decreases and stabilises itself 6 to 9 months after birth. At that
stage, viral load results can be used to guide treatment, as in adults,
and official guidelines can be used (see p 10-11).
-
- CD4+ counts
-
- CD4+ counts are much higher in infants than in adults, they then progressively
decrease towards values similar to those of adults when children are around
5 years of age. Therefore a CD4+ count below 500/mm3 during the first year
of life already represents an already major immune deficiency and is related
to a high risk of opportunistic infections.
-
- Anti-HIV treatments
-
- As previously mentioned, anti-HIV treatment is identical to that of
adults. However, for some drugs, the absence of paediatric formulations
for some drugs. In addition, it is often harder for a child to comply with
a demanding treatment. It is important that the doctor, the parents and
the child take some time to consider together which are the most suitable
options, based on the child's pace of life and activities. Other people
(from patients' advocacy groups, nurses, teachers, etc.) can sometimes
help (also see p 18-19 and 26-27).
-
- Opportunistic infections
-
- Prevention and treatment are usually identical in children and in adults.
Bactrim (co-trimoxazole) has been used for a long time in children and
is usually very well tolerated (often better than in adults). It is used
to prevent PCP, but also iterative bacterial infections.
-
- Since PCP can occur as early as 4 weeks after birth, Bactrim is prescribed
to all children older than one month who were born from an HIV-positive
mother. This treatment will only be stopped if the child is found tnot
to be infected with HIV. In infected children, treatment may be stopped
when they are one year old, if their CD4+ count is above 1500/mm3. Most
children do not carry toxoplasma and therefore will not develop toxoplasmosis,
but it is important to follow some basic hygiene rules to avoid contamination
with this parasite (see p 22-23).
-
Fabien SORDET
With thanks to
Pr Stéphane BLANCHE
and Christian COURPOTIN
-
-
- Kid-friendly formulations
-
- In the absence of tolerability studies, not all anti-retroviral treatments
(anti HIV drugs) are officially approved for use in children. Only Rétrovir
(AZT, as a strawberry-flavoured syrup), Videx (didanosine, which can be
chewed or dissolved), and Zérit (stavudine, powder to be dissolved)
have been granted a marketing approval (AMM, &laqno; Autorisation de Mise
sur le Marché ») for use in children, in France. Epivir (lamivudine)
and Hivid (zalcitabine) are available without an AMM, as a liquid preparation.
Abacavir, a new drug from the same family, can be obtained through an open
trial in some hospitals, for children who are failing or cannot tolerate
other treatments (see p 17).
- Viramune (Boehringer-Ingelheim Laboratories) is available as a liquid
preparation, and should be available in France in early 1998, several months
after the USA. Among protease inhibitors, only Viracept is available as
a paediatric formulation and can be obtained in France through an "ATU"
(Autorisation Temporaire d'Utilisation). Norvir is also available as a
liquid preparation but it contains too much alcohol and castor oil to be
used easily in children. Finally, both Crixivan (indinavir) and Invirase
(saquinavir) can be prescribed, outside of their AMM labelling, but they
are only available as capsules for adults.
-
- Anti-HIV drugs with formulations adapted
to small children
-
- Rétrovir (AZT) Syrup
- Videx (ddI) Tablets to dissolve Tablets must be taken on an empty stomach
and dissolved with water (do not use Coke, fruit juice or sparkling water).
Solution can be kept for one hour at room temperature. An oral liquid preparation
is available in hospitals.
- Zérit (d4T) Oral liquid preparation
- (suspension) Solution prepared with water can be kept for 30 days in
a refrigerator.
-
- Épivir (3TC) Oral liquid preparation
- (suspension)
- Hivid (ddC) Oral liquid preparation
- (suspension)
-
- Abacavir Oral liquid preparation
- (suspension) In 1997, only available in a few hospitals
-
- Norvir (ritonavir) Oral liquid preparation
- (suspension) Very bad taste, therefore difficult to administer. Contains
sizeable amounts of alcohol and should be avoided by young children. The
measuring glass should be thoroughly washed with hot water and dish washing
liquid (do not put in a washing machine). The bottle can be kept for 30
days at room temperature
-
- Viracept (nelfinavir) The powder Powder can be used alone or
mixed with milk, water, etc. To avoid bad taste, do not mix with fruit
juices or acid-tasting foods.
-
- Viramune (nevirapine) Oral liquid preparation
- (suspension) Expected to be available early
1998
-
- These drugs are available both in private and hospital pharmacies in
France, except those in italics. Drugs in bolded italics
are only available through hospital pharmacies, under ATU procedures (&laqno;
Autorisation Temporaire d'Utilisation ») or in the framework of an
open trial (for abacavir). These procedures enable, under certain conditions,
access to a drug before it has been granted an official marketing license
(AMM, &laqno; Autorisation de Mise sur le Marché).
|
|
- Taking a treatment is not a kid's
game
-
- Getting schedules and dosing right when giving treatment to HIV-positive
children can be very difficult and complicated, especially when there is
not a padiatric formula available. It requires a lot of attention, patience
and imagination from the adults around. Here are some helpful ideas.
-
- The first obstacle to administering drugs to a child, is the size of
the capsules and tablets: under pressure, the child tries to swallow them,
but s/he very often ends up coughing them back.
- Obviously, these enormous capsules are too much to swallow. And in
addition to that is the second obstacle - the taste - which is usually
horrible.
- Generally speaking, as for adults protease inhibitors are the most
difficult drugs to take, and consequently, they require a few &laqno;tricks».
- Most drugs can be mixed with food or liquids (with restrictions for
those that must be swallowed without any food, see below). Drugs that can
be taken with food can be, for example, diluted in a little milk for babies,
in a spoonful of honey, chocolate or, for older children other food.
- It is best to avoid mixing in drugs with a full meal since, if the
child doesn't eat everything, s/he will only absorb part of the treatment.
-
- Crixivan
-
- The content of capsules can be mixed with very sweet food (because
they are very bitter), provided that the child swallows it in about a minute.
- Jam or honey are probably the most suitable "lures" since
Crixivan must be taken without any food or, at most, with a fat-free snack.
It is worth noting that some physicians are starting to prescribe Crixivan
in two doses per day instead of three (to see [p]. 6-7).
-
- Norvir
-
- If oral suspension of Norvir is easier to swallow than capsules, its
taste is especially sickening. It also contains a large amount of alcohol.
When one remembers the vehemence with which adults, for whom it was designed,
rejected it (hence the incentive to develop capsules), one will understand
easily that the mere sight of the small bottle is enough to make some children
sick.
- Are these inconveniences reason enough to abandon a potent anti-HIV
drug ? Norvir has one advantage : it only needs be taken twice a day, during
meals which can include fat-containing foods. Its taste can be improved
by diluting lots of cocoa in a spoonful of milk, cottage cheese, cream,
or yoghurt.
- Taking Norvir in the middle or at the end of meals helps reduce nausea,
as well as the risks of losing appetite (this is true for all drugs which
do not need to be taken on an empty stomach).
-
- Invirase
-
- Invirase can be taken in the same way as Crixivan. Invirase should
be taken three times a day, preferably during large meals.
-
- Rétrovir and its relatives
-
- For the other anti-HIV drugs, reverse transcriptase inhibitors, things
are simpler. Rétrovir, Épivir or even abacavir, the last-
born of this family (see page 17) are easily swallowed by children. These
three drugs exist as flavoured oral formulations.
- Zérit is a powder to be diluted in a little water. If Hivid
tablets are difficult to swallow, they can be ground-up and mixed with
a spoonful of yoghurt. Besides, none of these drugs requires to be taken
on an empty stomach (Zérit's package insert indicates the opposite,
but based on recent studies, it should be modified shortly).
-
- Videx
-
- Videx should always be taken on a perfectly empty stomach, half an
hour before meals or two hours after; otherwise it will not work well.
- In fact, for Videx to be absorbed properly, the acidic contents of
the stomach must be neutralised, provided that there is not too much. During
digestion, however(including the "empty" digestion triggered
by chewing gum), the amount of acid is considerably increased.
- The child must therefore put up with the so-called &laqno;orange-tangerine»
taste of the medicine and its pasty consistence. Videx cannot be diluted
except in water or apple juice. It can also be chewed. Some children love
this special toothpaste that sticks to the teeth!
- More and more physicians prescribe Videx only once instead of twice
a day (see [p]. 6-7).
-
- Why do I take drugs?
-
- The taste of antiretroviral drugs is not the only cause of these difficulties.
The HIV+ child faces many other problems with taking drugs, and his family
need to be aware of this. Taking drugs at a very early age makes children
realise that they are not like other kids, even though they may not be
able to understand why.
- Later, they may understand (for example, while looking at televised
adverts) that syrups are taken to cure illnesses. They can, then, wonder
why, although they don't feel sick, they need to take drugs which, on top
of everything, may have unpleasant effects (nausea, etc.). How can we expect
that he would take &laqno; syrup » without asking any questions ?
- Obviously, the answer to these questions is simple: &laqno;No, you
are not sick, but you must take your drugs to avoid becoming sick ».
Very simple, isn't it? Yes, provided that the child is told that s/he is
HIV positive and what that means. And that's much less easy.
- Facing this dilemma, parents can get advice from paediatricians (often
excellent teachers/advisors on the subject), from psychologists and to
their own relatives. But such a decision is not easy to take and, in the
meantime, the child must continue to take his drugs regularly and parents
need to keep looking for &laqno;tricks».
-
- Should it be a game ?
-
- Some parents have managed to make treatment with antiretroviral drugs
a sort of game, thanks to pipettes distributed with Rétrovir, Epivir
and Bactrim. Hop! Children learn quickly how to get the syrup into their
mouth (or even Videx's oral suspension).
- Making children aware of his responsibilities sometimes leads to surprising
results. A mom ended up asking her little girl to help her, when she was
giving her drugs. Since then, the child opens her mouth without the tiniest
sigh. Another one gets her son to remind her when to take her drugs and,
incidentally, when to give him his own.
- If the child continues to refuse, involving a third party can be beneficial.
A guilt-stricken mother improved the situation by getting her husband to
help. Another relative, or a private nurse can also help. This was observed
by Sol-en-Si in Marseille: when the mother wondered if it worked better
with the male nurse, her son told her: &laqno;He is a man and he has more
authority than you have».
-
- The child who said these (not very &laqno;politically correct»)
words bears the responsibility for them!
-
Alain VOLNY-ANNE
Sol En Si
-
-
- When I grow up, I will be a footballer
-
- Ramazan - the nickname he choose for himself - is thirteen years old.
He is HIV positive. Born in Africa, he is now living in France. I met him
with his mother and the volunteer from Sol-En-Si who helps this family.
-
- Thierry (for Remaides): In what class are you in?
-
- Ramazan: In fifth grade. For now, everything is fine. I have some average
marks, otherwise things are OK. I like to play soccer after school. I am
right forward. I also play Ping-Pong and rugger.
-
- Thierry: Do you want to become a football player?
-
- Ramazan: Before I wanted to be an engineer and after a football player.
-
- Thierry: do you take drugs? Since when?
-
- Ramazan: Yes, for long enough.
-
- M. (his mom): We arrived in France in 1987. He was three years old.
Since then, he has been on treatment.
-
- Thierry: When do you take drugs?
-
- Ramazan: In the morning and in the evening. In fact, since last summer
vacation, I take a triple therapy with Norvir, Videx and Zérit.
It is more difficult than before. Sometimes, I am fed up with this. But
I am sort of used to it and I would certainly not want to get ill.
-
- Thierry: Is the physician you see friendly?
-
- Ramazan: (after a pause) Yes, he is friendly. In fact I have two Professors.
One of them has big eyebrows and the other one rides a bike and he is younger.
They don't speak the same way. The young one, he is friendlier and he lets
me do sport.
-
- Eudes (volunteer at Sol-En-Si): Tell me about when you were going to
the out patient clinic and how things are now.
-
- Ramazan: Yes, I used to go to the out patient hospital. I arrived around
9 a.m., they put me in a room and I had to wait for a blood test. Every
time I had a drip and I always told the nurse to make it flow more quickly.
After, I had to wait for the physician who examined me and asked me questions.
Afterwards, I had to wait again so that he could write the prescription.
Then I began to take my drugs better. I don't remember the name anymore,
what gets lower when I take my drugs well?
-
- Eudes: The viral load.
-
- Ramazan: Yes, the viral load. I asked if I could go to the hospital
once every two months (to Eudes) as you do. I was told : if I take my drugs
well, I can do that.
-
- Eudes: would you know how to explain what happened in the beginning
of summer, when we decided to change your treatment?
-
- Ramazan: Before, the viral load was already fairly-high. You had told
me that if it went up again, I would have to change drugs. And the viral
load went up again. The Professor said that it was not too serious and
you said that yes, 50 000 was a lot, that we had spoken of this together
and that I was ready to change. And there, the Professor, he didn't really
know very well what to choose. You said that the drugs that I am taking
now, with Norvir, I could take as a syrup. The Professor looked surprised,
he said immediately : yes, we could do this. To begin the new treatment,
I went to Eudes, to see the effects of the Norvir syrup. We started with
small amounts, until we got to the normal dose. In the beginning, it made
me feel sick, I even vomited. After five days, there was no more problem,
except for the taste. In fact, very quickly, I tried capsules instead of
the syrup and I kept to them.
-
- M. : And summer camps?
-
- Ramazan: I had to go to summer camp for the holidays. We had to meet
at school. The gentleman, in fact, was the director of the summer camp,
asked: "Why does he take all these drugs?" Eudes explained everything
to him. The gentleman asked: "What illness does he have?"
- Eudes said: "I cannot tell you myself, but maybe, he can tell
you, if he wants to". I told him that I was HIV positive. The gentleman
answered: "I won't take you because of that". Eudes said that
he had phoned a lady to tell her because of the effects; she had said OK,
no problem, I could come. The lady also said that she would tell the director.
She told him, but he pretended that he didn't know. Although in college,
during the year, there is no problem.
- After this, I managed to leave, thanks to Sol-En-Si and not thanks
to the Town Hall. I did a cross-country bike camp and everybody had a medal
at the end.
-
- Eudes asks Ramazan what he hopes for the future.
-
- Ramazan: I can't wait for them to find a cure! Or else that they find
a way to give a drug which would work for a month and in which they would
put everything. In fact the drugs are better, but it seems that they take
more time to release them to make more money. Sometimes, often, when I
go to the hospital, I tell myself that maybe if my viral load is too high,
I could get AIDS, sometimes aI also speak about this with Eudes, but for
now I don't have it, so I don' t think too much about it. Even though drugs
are not very good and they are difficult to put up with, I take them anyway
and that shows that if you really do not want to get the illness, you need
to think about taking them.
-
- Thierry: do you have brothers and sisters?
-
- Ramazan describes his family.
-
- M. : Don't you speak of your other little brother?
-
- Ramazan (he rubs his eyes and starts to cry): I had another little
brother. When he died, he was eighteen months old and he was ill. He went
to the hospital. I asked mom when we were going to visit him. After, we
left for vacation and someone phoned us to tell us that he was dead. Sometimes
I think about him, but I cry, after.
-
- (silence)
-
- Thierry: did you return go back to Africa since you arrived in France?
-
- Ramazan: We wanted to, but we didn't have the passport. With the rugger
team, we will maybe go to England. If we have the papers. It would be great
to go there for Christmas.
-
-
- Food and children
-
- Feeding HIV positive children is often a concern for parents. However,
a few bits of advice are often enough to make sure they eat well. When
the child doesn't have particular problems, food doesn't need to be any
different from that of other children (with the exception of the breast
feeding which should absolutely be avoided).
-
- Milk
-
- Breast feeding is one way a child can be infected (of re-infected if
the child is already HIV positive). HIV positive women should therefore
not breast-feed their babies (as do about half HIV negative women). Milk
for bottle feeding is always very good quality and is sold in supermarkets.
The quality and the composition vary very little from one label to another:
you don't have to take the most expensive one!
- Only special milks are delivered in pharmacies, with special prescriptions.
- They are designed for children with particular digestive problems.
- To prepare bottles, measures indicated on the milk box must be followed
to avoid causing digestive problems. It is better to use bottled ("mineral")
water which bears a label saying "adapted to the preparation of baby
bottles" or "adapted to the feeding of young babies".
-
-
- Getting advice
-
- It is important to discuss food with the specialist physician taking
care of the child.
- You can ask him to make an appointment for you with a dietician who
can be consulted (free of charge) in a hospital. In the absence of digestive
problems, feeding an HIV positive child is no different from feeding other
children. No particular diet is necessary. The free access "Centres
de Protection Maternelle et Infantile" (PMI) can provide good advice.
- AIDS advocacy groups (see [p]. 28) can provide financial help if this
is required to provide good quality food to the child.
-
- Follow the child's growth.
-
- In adults, HIV can cause a weight loss, especially from muscles (lean
body weight) and it makes the patient at greater risk from opportunistic
illnesses. For a child, things are not very different. During growth phases,
loss of weight will not occur. However, growth can be slowed down. It is
important to notice this early on, without waiting for several months.
For this purpose, growth curves exist, which describe the normal evolution
of the child's size and weight. These curves are included in the "carnet
de santé" of the child and normally have a regular progression.
In practice, during the first months, weighing the child once a week is
sufficient: doing it too often doesn't help and can be a cause of worries.
When the child is bigger, once a month is sufficient.
-
- If it is necessary to eat more.
-
- When children have a normal growth (see above), there is no need to
push them to eat more. But this may become necessary if growth slows down.
The simplest way is to follow the child's tastes, and then give more of
what they like. However, to avoid too big unbalances, you should provide
a variety of food. Lights meals or snacks should also be provided during
the day. Children often like dairy products (yoghurts, cottage cheese,
creams, etc.). Be careful with sweets (confectionery, etc.) which can spoil
their appetite!. Do not to force the child too much, so that taking meals
remains a pleasure.
-
- An appointment with a dietician is often useful. A food plan will help
assess the child's needs and show the child the benefits of eating well.
- These measures can be combined with the prescription of some food complements.
They can improve the intake of calories and proteins, but must be used
only as a supplement of usual meals (see the frame). Many flavours exist,
sweet or savoury, also varied textures (drinks, creams, etc.) and products
especially intended for children (Nutrini, made by Nutricia). These few
"tricks" are often sufficient to get normal growth to resume.
-
- Artificial feeding.
-
- If the steps described above are insufficient, the doctor may suggest
artificial feeding, by means of a tube directly into the stomach or, sometimes,
by an intravenous line.
- Artificial feeding can help get over difficult periods. It can be very
efficient, especially if it is started early enough. It requires a good
co-operation between the child, the medical team and parents. It is stopped
as soon as possible to come back to a normal way of feeding.
-
- Avoid toxoplasmosis
-
- To avoid the child (as an adult) being contaminated by toxoplasma,
it is important that he only eats very well cooked meat. Food that is eaten
raw (fruits, vegetables) should be thoroughly washed (see [Remaides] n°20,
[p]. 34-35).
-
- In case of diarrhoea
-
- Diarrhoea is frequent in young children. More than in adults, dehydration
(loss of water and mineral salts) represents an important risk. This risk
is more important if the child is very young, if he has fever or if he
vomits. Is it critical that the child continues drinking. It is also necessary
to quickly call the physician and to see him preferably within 24 hours
(or more quickly if diarrhoea is very severe: in this case, you can call
the paediatric emergency room of the nearest hospital or dial "15"
on a telephone, to get assistance).
- Even before you see the physician, stop giving milk (since it can increase
diarrhoea). If the child is less than one year old and diarrhoea is severe,
also stop other foods and give a rehydrating solution to drink. This is
a powder containing sugar and mineral salts, to be diluted in water. Give
to the child in small amounts, every fifteen to thirty minutes (but without
forcing). These solutions are available in pharmacies. It is good to always
have some boxes at home, ahead of time. If you do not have any, you can
give lightly sugared water to the child. The physician will be able, if
necessary, to prescribe milk without lactose (a component of milk that
can sometimes increase diarrhoea). If the child with diarrhoea is older
than one year, usual feeding can be continued (without milk, however, and
avoiding raw fruits and vegetables). Mashed vegetables, rice, pasta, meat,
fish, dairy (cheese, yoghurts, 'petits suisses') can be given. Among foods
which can improve diarrhoea are rice, rice water, baked carrots, quince,
bananas, etc. Children over one year of age can take Coca-Cola (which contains
a lot of sugar and of mineral salts). In any case, call a physician and
ask him how to progressively resume normal feeding.
-
- If vomiting occurs
-
- There is also a risk of dehydration, but the child sometimes has difficulties
drinking. Quickly call your physician, especially when the child is very
young. For a child over one year of age, Coca-Cola can be useful to reduce
nausea. Finally, regarding meals and drug dosing, please refer to the other
Remaides articles.
Vincent JARDON
With Maryse KARRER
-
-
- Food complements
-
- If they are prescribed by a physician, food complements are reimbursed
by the Securité Sociale, using a set price. But their selling price
varies. They can be bought at a pharmacy or through the following companies
which can deliver at home and which charge a price corresponding to the
Sécurité Sociale price :
-
- Caremarks: 01 69 29 12 12 (24 h/24).
- EFMS: 01 44 74 91 90.
- Orkyns: 01 48 10 64 70 (24 h/24).
- Vitalaires: 01 41 80 19 10 (24 h/24).
- West Home Care Médical: 01 46 04 04 13
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- Families living with HIV: know your
rights
Families living with HIV can, at times,
face difficulties with access to health care, schooling, child care or
resources. To face these difficulties, it is helpful to know your rights
and negotiate with social services, day care centres and schools. AIDS
advocacy groups can provide help (see p 28). They are also places where
one can talk about daily life.
Access to health care
Every person living in France is entitled to health care. "Aide Médicale"
can cover the costs incurred by people who are not entitled to "Sécurité
Sociale" benefits, whether they are living in France legally or not.
You must make a request to your "assistante sociale", for instance
through the hospital department in which the mother or the child are followed-up.
Even if this has not been done, one can be admitted to a hospital in case
of emergency. A child born of an HIV-positive mother is entitled to 100%
coverage of all costs until the age of 18 months, provided he/she is entitled
to "Sécurité Sociale" benefits. The 18 months age
limit does not apply if the child is infected with HIV. "Aide Médicale"
can provide additional resources to low income persons.
Get the necessary resources
Parents can have access to various types of subsidies, depending on their
circumstances: "RMI" (revenu minimum d'insertion), "AAH"
(allocation adulte
handicapé), "allocations familiales", "allocations
logement".
The "allocation d'éducation spéciale" (AES) is
intended for the parent who stays at home to take care of the infected
child, whether or not the parent legally resides in France. Ask your assistante
sociale about all these types of benefits.
Groups such as "Sol-En-Si", "Dessine-moi un mouton"
or AIDES-Toulouse can provide financial assistance to parents whose income
is too low to take care of their family: housing rental, lease of an apartment
(Sol-En-Si), financial help for food or other needs, etc.
Should one disclose that a child
is HIV-positive ?
HIV cannot be transmitted in the usual circumstances of a child's life.
Parents are therefore under no obligation to disclose the status of their
child to anyone. Nevertheless, in the child's own interest, it may be helpful
to establish a close dialogue with some people who take care of the child.
This is particularly critical when the child's health status requires specific
attention: tiredness, repeated absences, special care needed during the
day, etc.
The first person to contact should be a doctor who is bound by professional
secrecy (school doctor, day care or "PMI" (Protection Maternelle
et Infantile) doctor). The doctor will be in a position to advise parents
and discuss with them what needs to be done. He/she will also be able to
inform the school/day care staff about the child's needs, without disclosing
the diagnosis. This needs to be prepared first with your family doctor
who will, for instance, be able to write a letter or call his colleague.
Finally, parents are often worried about telling a child that he/she is
HIV-positive. Talking to their doctor or to AIDS advocacy groups can help
reach the best possible decision.
"Carnet de santé",
vaccines
The "Carnet de Santé" can only be communicated to doctors
who take care of the child, but it is, at times, requested by other persons
(e.g. director of the health care centre). This request can be turned down,
but it is often more simple to ensure that the HIV status of the child
is not mentioned on this document. Regarding vaccines, in particular BCG,
please see p 12-13.
"Crèche" (day care centre), "assistante maternelle"
(nanny)
Most often, HIV-positive children can be admitted under the same conditions
as other children of the same age. As mentioned earlier, it is best to
first meet the day care centre or "PMI" doctor to discuss the
best possible options. Health care professionals (nurse, physical therapist,
etc.) can be contacted during the day, through ward or hospital duty systems.
"Usual" day care centres provide good care, but exposure to other
children may lead to minor infections (runny noses, etc.) and may be best
avoided if the child's immune system is weakened. An independent "assistante
maternelle" or one working for a "crèche familiale"
may be of assistance under these circumstances. Please note that if a child
is under the care of an "assistante maternelle", she loses money
every time the child is absent. If this is to be expected, it is best to
bring up this issue upfront to avoid possible conflicts. Finally, "Sol-En-Si"
has several day care centres ("haltes garderies") in several
cities which can take care of children who cannot attend usual centres.
At school
Schools are obliged to accept children regardless of their health status
or handicap. If special arrangements or monitoring are necessary, it is
advisable to talk to the school doctor. Some children need to take drugs
during the day. A Health Ministry bill authorises the school nurse, or
if unavailable, the director or teacher to administer the drug. This can
also be done by a private nurse, if this has been arranged with the school.
Baby sitting for unexpected situations
For a short period of time (e.g. to attend a doctor's appointment), the
child can be left to the care of a "Sol-En-Si" "halte garderie".
In some situations, "Dessine-moi un mouton" can send someone
to your home. For longer periods of time (e.g. if one of the parents needs
to be admitted into a hospital), volunteers from "Sol-En-Si"
can take care of the child in their own home, and make sure that the child
continues to go to his usual school or day care centre during the day.
AIDS advocacy groups can help in designing other more specific arrangements.
To ensure the child's future
Parents may want to make plans to ensure their child will be looked after
in the future, should they themselves die. AIDS advocacy groups can assist
with the paperwork needed for such situations. "Sol-En-Si" can
provide legal advice.
Help at home
"Travailleuses familiales" help families take care of children
and assist with daily tasks. These persons are employed by the "caisses
d'allocations familiales", by cities or by independent organisations.
AIDS advocacy groups and "assistantes sociales" can provide assistance.
"AIDES à domicile", provided by AIDES, can offer the assistance
of "aides ménagères" (for household work) and "garde
malades" (for sick persons' care) who have undergone an HIV infection
training course (see Remaides 25, p 18).
Holidays
It is important to ensure that the absence of a child away from his parents
for several days is properly prepared, so that treatment be properly continued
and that the people who will take care of him know what to do in case of
any problems. The nurse or doctor in charge of the holiday camp should
be contacted, once this has been discussed with the doctor who usually
takes care of the child. Some AIDS advocacy groups (Sol-En-Si, AIDES Languedoc-Cévennes)
organise holiday camps for children.
Thierry PRESTEL
with AIDES, Sol-En-Si,
Dessine-moi un mouton
- Official regulations
No child may be turned down or ostracised at a day care centre, at school
or at a holiday camp because s/he is HIV-positive: anyone discriminating
based on health status or handicap can be prosecuted (12 July 1990 law,
article 187 and 416 of the "Code pénal"). A bill from
the Education Ministry (number 92-193, 29 June 1992) further clarifies
the law for a school context. In addition, anyone in contact with the child
is held to professional secrecy. For further information, please refer
to the guidebook "Droit et sida" (éditions LGDJ, 14, rue
Pierre-et-Marie-Curie, 75005 Paris).
Children: how can associations
help ?
Sol-En-Si (Solidarité Enfants Sida) is the most important association
aiming at helping families living with HIV in France. Officially acknowledged
("reconnue d'utilité publique") Sol-En-Si offers multiple
services. The "haltes-garderies" (see addresses below) are open
Monday to Friday from 8 am to 8 p.m. Fees are affordable for all. Furthermore,
some families can receive children in emergency situations (e.g. when a
parent is admitted into a hospital), or during holidays, alone or with
their own families. A transportation service is available (in the Paris
area) for children who need to be accompanied to their medical appointments.
Sol-En-Si also provides assistance to parents: "buddy" support
for the family; workshops to help with job or accommodation search; health
workshops; legal and financial assistance.
Sol-En-Si, national headquarters: 125, rue d'Avron, 75960 Paris Cedex 20.
phone 01 43 79 60 90.
Receiving centres:
· 35, rue Duris, 75020 Paris. phone 01 43 49 63 63 ;
· 41, avenue René-Coty, 75014 Paris. phone 01 43 22 42 81
;
· 47, rue Raspail, 92270 Bois-Colombes. phone 01 47 85 98 82 ;
· 24, rue du Lieutenant-Lebrun, 93000 Bobigny. phone 01 48 31 13
50 ;
· 29a, place Jean-Jaurès, 13005 Marseille. phone 04 91 92
86 66 ;
· 1, place du Palais-de-Justice, 06000 Nice. phone 04 93 62 62 77
;
· 17, lotissement Victor, route de Baduel, 97300 Cayenne. phone
00 594 31 88 99.
"Dessine-moi un mouton" is an association aiming at supporting
children and families living with HIV. A daytime centre is open to children
and families, no appointments are necessary, Monday to Friday from 9 am
to 6 p.m. The "Dessine-moi un mouton" staff offers assistance
for every day problems, and for administrative and legal procedures.
Dessine-moi un mouton, 35, rue de la Lune, 75002 Paris. phone 01 40 28
01 01.
Some "AIDES" sections have developed activities particularly
directed towards children and their parents.
In Toulouse: a daytime centre open to families, fosters dialogue and exchanges
with other people in similar situations. Assistance with administrative
issues, advice, and psychological support are also available.
"Lieu d'accueil parents-enfants" : 338, route de Saint-Simon,
31100 Toulouse. phone 05 61 44 20 34.
AIDES Languedoc-Cévennes (Nîmes) organise a summer camp in
August in the Cévennes mountains, for children from families living
with HIV. phone 04 66 76 26 07.
The "groupe parents-enfants " of the AIDES Comité Ile-de-France
(Paris area) offers various opportunities for meetings and discussions.
phone 01 53 24 12 00.
More generally, all the AIDES committees are open to people living with
HIV and can provide support and information. "AIDES à domicile"
offers assistance at home for sick persons ("gardes-malades")
or for all household activities (shopping, cleaning, meals, etc. See Remaides
25, P 18). To obtain the address of the nearest AIDES committee, please
call AIDES Fédération nationale in Paris, at 01 53 26 26
26.
T. P.
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