Phototherapy is a treatment using blue light to degrade the bilirubine which is on the surface of the skin only (it does not treat in depth).
So, only a small quantity of bilirubine is eliminated .
But, as the bilirubine is constantly being produced as a waste product of normal metabolism, it is necessary to treat ceaselessly and the duration of the exposition is very important.
When growing, children need more and more phototherapy.
As skin is thickening with time, the efficiency of the PT decreases and thus time of exposition has to be increased.
Moreover, the size of the device has to evolve with the size of the child, the result being proportional to the surface of enlightened skin.
The number of tubes is thus gradually increased and devices changed and adapted to the case of every child
We pass from 8 tubes to 20, even more, and devices lightning from above to devices lightning from below, then from above and below if necessary.
But, except devices for new born, there is nothing commercialised for the growing children and adults (companies seeing obviously no commercial interest to concieve and build one or two devices only.)
Thus, parents have to manage to imagine, concieve and build on their own, or have it made , at their expenses , devices corresponding to the size and need of their child.
They are ceaselessly looking for new ideas and new techniques which would allow their child to have a more effective, and less heavy and more transportable phototherapy device.
They try to act on the following parameters to concieve more effective devices :
Type of source (fluorescent tubes, leds, optical fibers): In the case of the fluorescent tubes, only used at present, which ones are the most effective? 60cm, 120cm, BB Blue or Philips TL20W52?. The tubes are less efficient after a certain time of use. They lose in efficiency and must be changed every 4 or 5 months. Other sources, are still for study.
Number of tubes : According to the size of the child.
The proximity of the light source to the skin: The closer to the body, the more effective it is. For the older children, we gradually skip to a phototherapy from below, which allows to be very near (5 in /10cm), but implies a search for the most comfortable and the most transparent possible fabric for the sleeping surface.
The amount of skin area exposed : The phototherapy above – underneath is more effective, but not the most comfortable.
It thus brings to various devices stemming from do-it-yourself and diverse ingenuities, the parents gleaning to the right and to the left the advice of scientists, doctors and, the improvements brought by other persons in the various countries.
We so found, worldwide, various devices conceived by parents, grandparents or scientists avid to help these children.
In here are some examples.
Phototherapy from above
120 cm BB Blue tubes are used here
Here, 20 Philips TL52 tubes of 60 cm
The child sleeps on a camp bed equipped with a very transparent polyester sheer curtain.
This device was produced thanks to the advice and participation of a French doctor, and an American doctor.
The principle is the same as before, but note the use of mirrors all around to reflect the light even better
A very ingenious Australian device
The child sits inside the device, which includes around 30 60 cm tubes and reflective surfaces all around it: the whole body is treated in this way.
A “home” production
A modular device
An interesting device which, thanks to its modularity, can be stored in a suitcase with wheels. An interesting solution for travel
A transportable LED device (underneath phototherapy)
Another portable device (phototherapy from above)
Here, an arrangement allowing the life of couple.
A led device
Led technology is set to develop.
Two Dutch companies are now manufacturing LED devices for Crigler-Najjar patients
The size and difficulty of transporting these devices is still a big problem!
Innovative project of the French Crigler-Najjar Association (AFCN)
2010 -2012: The AFCN has initiated, financed and collaborated to the realization of an innovative fiberoptic prototype, by a french company. This innovative phototherapy device will improve the quality of life of the CN patients. The treatment will be more comfortable, probably more efficient and transportable in a suitcase.
2012: The prototype has been presented to the French Reference Center of the disease to be clinically tested.
2014 The AFCN is financing the clinical trial of the prototype.