POST-TRANSPLANT

 

How long will my child stay in the ICU (intensive care unit)? Can we sleep next to our child in the ICU?

Depending on your child’s development, he may stay in the ICU for 4 to 5 days or longer. Parents are not allowed to sleep next to their child. However, you may visit your child every day and at every moment of the day after having gone to the ICU reception desk.

 

May my child have visitors (brothers, sisters, aunt, ….)?

Visitors are authorised as long as they respect the basic precautions: hand disinfection when entering and when leaving the room. When a visitor (the brother or the sister) has a cold or has symptoms of infection, they must stay at home.

 

What hygiene measures must be taken at hospital and later at home?

At hospital: Your child is alone in his room. When he leaves his room to go to areas with a high density of people (cafeteria, US room, garden,…), he must wear a mask. He may take it off in his room.

The parents can wash their child with filtered tap water and normal soap.

Food should not be kept too long in the room, it should rather be consumed quickly. When your child does not eat his meal at once, give it back to the nursing assistant or the nurse. After the meal, you should get into the habit of performing your child’s dental hygiene. Put the pacifiers or soothers as well as the nursing bottles for one hour in a cold sterilisation solution. The solution is changed once daily by the nursing assistant. Bedding is changed once daily (sheets, pillowcases, undersheet,…) and the complete bed once per week.

At home: Your child will not wear a mask. However, when one of the brothers or sisters is sick, “physical” contact with your transplanted child must be avoided if possible.

As to food, it is preferable to go shopping once per week and buy “fresh” food and to prepare small quantities of food and to consume it quickly avoiding keeping them in the refrigerator for too long.

 

Which pain-relieving drugs or antipyretics for my child after the transplant?

Your child is administered Prograf® after the graft. When he has fever or pain, it is indicated to only give him paracetamol (Dafalgan®, Panadol®, Benuron®,…), but absolutely no ibuprofen (Algifor®, Irfen®, Brufen®, Nurofen®, of the NSAID family= nonsteroidal anti-inflammatory drugs). The combination of Prograf®/Ibuprofen may have harmful effects on your child’s kidneys. IN CASE OF PERSISTING FEVER, DESPITE DAFALGAN, CALL YOUR PAEDIATRICIAN. THE MORE RECENT THE GRAFT, THE GREATER YOUR CHILD’S NEED TO QUICKLY SEE A PHYSICIAN.

 

May I give him paracetamol suppositories?

In case of pain or fever, you are authorised to give him Dafalgan® suppositories every 6 hours.

 

May I give him tap water here at the hospital? And at home?

When your child is hospitalised, you should give him Henniez bottled water. Once opened, you can keep it for 24 hours at room temperature and then you must throw it away. YOU MUST NEVER GIVE HIM HOSPITAL TAP WATER!

At home, your child may drink tap water.

 

What do I have to pay attention to when preparing meals for my child? What may he eat and should he avoid?

Storage, preparation and cooking of food must take place in a “clean environment”: regularly cleaned refrigerator, utensils and tableware cleaned very thoroughly using hot water and detergent, very clean work surface. It also is important that you wash your hands before cooking.

Drinks must be pasteurised or UHT; raw milk is advised against on the long term. As to raw meat, fish and eggs, they are allowed from the 4th month after the graft on, but these food items must be as fresh as possible. Store fresh or already cooked food in the refrigerator and make sure to consume them as quickly as possible. As regards deep-frozen food, it must be cooked without prior thawing. Never refreeze thawed food. When going shopping, pack up fresh food and carry it in a cool bag to avoid breaking the cold chain and always check the use-by dates of food items.

Caution: Grapefruit (fruit, juice, yoghurt, etc…) is forbidden since it is not compatible with the taking of Prograf® (tacrolimus) or  Sandimmun Neoral® (cyclosporine).

 

May I do the shopping with my child?

During 6 months after the graft, it is preferable to avoid going to public places with a high density of people, in particular in winter.

 

May my child go swimming?

In the sea: You child may bathe in the sea. It is always absolutely necessary to apply “sun block” sunscreen since Prograf® may make children more sensitive to the harmful effects of sunlight.

In the swimming bath: It is recommended to avoid public swimming baths during the first year after the graft. However, private pools (at home, at a friend’s or family member’s home) are authorised.

 

How must I administer Prograf®? Must it always be at the same time? May I change the schedule for reasons of family organisation?

Prograf® or other immunosuppressive drug, should always be taken by mouth and under the following conditions:

Do not eat for one hour before taking Prograf® and also wait for half an hour afterwards before eating. Drinking water during this time is permitted. Do not take any other medication for one hour before taking Prograf® and also wait for half an hour afterwards before doing so.

Taking food and other medicines simultaneously with Prograf® reduces its absorption.

It must be administered at set hours in order to avoid fluctuations of its level in the blood and to thus attenuate its side effects.

In case of vomiting, apply the half an hour rule: when a vomiting episode occurred within haft an hour after the administration of the drug, it is reasonable to think that the child did not absorb his dose; thus, you can give him the same dose a second time. When the episode happens half an hour or more after the administration of the drug, do not administer it again, since it probably has been absorbed. Do not hesitate to contact our Centre when you are in doubt or if the vomiting persists.

All grapefruit-based products must be avoided due to its interference with the metabolism of tacrolimus. Grapefruit juice may very significantly increase the level of tacrolimus in the blood. When your child eats grapefruit or drinks the juice of this fruit by mistake, please inform our Centre immediately!

The change in the time schedule for administration of tacrolimus is made by mere adjustment to the new schedule, without any gradual scheme. This rule applies irrespective of the interval lapsing between the former schedule and the new one.

For example:

Upon the seasonal time change, give the medicine to your child according to the new time.

08:00 a.m. wintertime      ->           08:00 a.m. summer time

Travelling between time zones

08:00 a.m. Geneva time    ->           08:00 a.m. New York time

 

When my child has a nasogastric tube, which drugs must he absolutely take orally and which drugs may I administer via the tube?

It happens that children return home with a nasogastric tube. Please note that Prograf® must absolutely always be given orally.

The other treatments, except for Nifedipine®, Amphomoronal® and Mycostatine®, may be administered via the nasogastric tube if really necessary. Eventually, your child will no longer need his nasogastric tube which is why it is preferable to get him used to the oral taking of drugs.

 

Will my child have to take his immunosuppressant for life?

Your child must take his immunosuppressive treatment (Prograf®) for life, always at set hours (morning and evening). Since transplantation medicine is a recent medicine and in constant development, it is possible that new solutions develop during your child’s life.

 

What tricks are there to motivate or encourage my child to take Prograf® when he refuses it (forcing him, waiting, etc…)?

You can add a bit of grenadine syrup to the suspension since the syrup does not alter absorption very much. Over time, your child will learn that the taking of the drug is part of his life routine.

 

How long must he take the drugs (except for Prograf®)?

The table below states the general rule that may vary from child to child:

Types of drugs Duration of post-transplant drug administration
Prednisolone® or Prednisone® 3 months in decreasing doses
Bactrim® and Folvite® one year
Aspirin® 3 months
Valcyte® 6 months
Ursofalk® 3-6 months
Antihypertensive treatment: Norvasc® (amlodipine), Reniten® and nifedipine depending on your child’s development
Aquadek®, magnesium, Calcimagon D3® depending on your child’s development

 

Why must my child take all these drugs and what are they for? What side effects do they have? 

 

From which month after the graft on can my child go to the kindergarten, to school… again?

You child may go to school again as soon as possible and, as regards the nursery, from the 6th month after the graft on (to be discussed on an individual basis if the family has difficulties).

 

What to do when my son is feverish? Must I immediately go to the Children’s Hospital or my paediatrician?

First of all, you can uncover your child and bath him. When he still is feverish despite all these measures, you can call your paediatrician and then give him Dafalgan®. If the fever persists in spite of Dafalgan®, take your child to the paediatrician or directly to your nearest Children’s Hospital. You can always call the Centre in order to speak with a member of the team who knows your child.

 

May I put a carpet down in the room because the floor is tiled and my baby starts crawling on all fours or simply that he can sit down?

You can put down a carpet (avoid long-piled carpets) in order to promote your baby’s mobilisation so that he is not in direct contact with the tiled floor.

 

Should I sterilise the bottles after every use or may I simply put them in the dishwasher or hand wash them thoroughly?

At the hospital: You must “cold sterilise” the bottles, the rings, teats or pacifiers for one hour in a soaking solution and then let them dry.

At home, you can either put them in the dishwasher or hand wash them thoroughly.

 

Can I use wet wipes rather than dry wipes that need to be moistened?

Wet wipes can be used provided that the baby’s seat is dried well afterwards and not left wet. Humidity promotes the proliferation of fungi (mycoses), in particular in immunosuppressed children.

 

May I use a tube of ointment already opened for some days or some months (e.g. Osa for the teeth)?

Yes, provided that you observe the use-by date stated on the package.

 

From which blood pressure readings on must I give my child Aprical®(nifedipine) or not?

Blood pressure readings vary from child to child and cannot be generalised at all. Before you leave the hospital, we will give you exact instructions regarding the measurement of blood pressure and the treatment, if required.

 

When and how should the blood pressure of transplanted children be taken?

Always check your child’s blood pressure before giving him a drug for hypertension. Every time you take his blood pressure, write down the date, the time and the indicated value as well as the moment when he takes this drug and the dose. Follow the instructions given by your referral nurse regarding the administration of the drug for hypertension. When the blood pressure readings are too high, do not hesitate to repeat the taking of the pressure two or three times before giving your child an antihypertensive drug. It is preferable to take the blood pressure while your child is calm.

 

Why is varicella or an EBV (Epstein-Barr virus) or CMV (cytomegalovirus) infection so dangerous for an immunosuppressed child?

Immunosuppression diminishes your child’s immune response to the virus. What is so special about these viruses is that they can reside and hide in the cells and reappear later, which is why they are more difficult to “treat”. The CMV may have effects on various organs and may cause rejection. In very exceptional cases, the EBV may cause a lymphoproliferative syndrome (PTLD) similar to lymphoma. Finally, the varicella virus may cause a large number of complications in a child who has not developed immunity before transplantation.

 

What are the dangers of an infection for a transplanted child?

There are more risks that your child develops the various complications of an infection. For example, when he suffers from colds, he is more likely to develop pneumonia or otitis later.

 

How long must my child continue to take Ursofalk® and Aquadeks®? Do children systematically take them after transplantation?

Ursofalk® is continued for 3 to 6 months after transplantation depending on the biological results (liver tests). Aquadeks® is necessary to compensate for vitamin deficiencies often developed before the transplantation.

 

We are giving valganciclovir for CMV? Why do you not give wide-spectrum antiviral drugs to prevent varicella, EBV,…?

There are no efficient prophylactic antiviral drugs available for the other viruses.

 

Can a transplanted child get vaccinations or are they contra-indicated?

We do not recommend vaccinations for transplanted children before the end of the first year after transplantation, but we regularly discuss this topic at every visit. We thank you for always bringing the certificate of vaccination with you.

 

In which interval do transplanted children return to Geneva for follow-up examinations? How long does a follow-up examination take? Can the examinations be performed without hospitalisation? What do we check during these evaluations and why?

 

Liver examination: Which examinations? How? Why?

 

May we keep our cat/dog, bird, rabbit or do we have to give them away to the animal shelter?

The family may keep their existing pets. You should not take any new pets, at least during the first year after transplantation. When the family has birds, the transplanted child is not allowed to clean the cage and he must avoid direct contact with poultry. Snakes and tortoises and turtles should be avoided.

When you have pets, the basic hygiene rule that must be observed is that the transplanted child and his family must wash their hands often.