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The phototherapy

Phothothérapie CRIGLER-NAJJAR 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, you understand that it is necessary to treat ceaselessly ; you also understand that the duration of the exposition is very important.

When growing, children need more and more phototherapy.

Because of the thickening skin, the efficiency of the PT becomes lesser and we thus have to increase the time of exposition.

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 so 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 renewed 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.

Photothérapie par le dessus

Ici, sont utilisés des tubes BB Blue de 120 cm

Photothérapie CRIGLER-NAJJAR
Photothérapie CRIGLER-NAJJAR Photothérapie par dessous

Ici, 20 tubes Philips TL52 de 60 cm

L’enfant dort sur un lit de camp dont le couchage est un simple voilage très transparent en polyester.

Cet appareil a été réalisé grâce aux conseils et participation d’un docteur français, et d’un docteur américain.

Le fabuleux appareil d’un petit anglais

Le principe est le même que précédemment, mais à noter l’utilisation de miroirs tout autour pour réfléchir encore mieux la lumière

Appareil de photothérapie
Appareil de photothérapie Appareil de photothérapie Appareil de photothérapie
Photothérapie CRIGLER-NAJJAR Un appareil australien très ingénieux

L’enfant est assise à l’intérieur de l’appareil qui comprend une trentaine de tubes de 60 cm et des surfaces réfléchissantes tout autour d’elle : tout le corps est ainsi traité.

Photothérapie CRIGLER-NAJJAR - modulable Un appareil modulable

Un appareil intéressant qui, grâce à sa modularité, peut être rangé dans une valise à roulettes. Une solution intéressante pour les voyages

Quelques exemples d’utilisation. Photothérapie CRIGLER-NAJJAR-modulable Photothérapie CRIGLER-NAJJAR-modulable

Ici, un aménagement permettant la vie de couple.

Crigler-Najjar photothérapie Crigler-Najjar photothérapie Crigler-Najjar photothérapie
Un appareil à leds

Ici les tubes fluos sont remplacés par des leds (milliers de petits points lumineux).

La technologie led est appelée à se développer.

Photothérapie CRIGLER-NAJJAR - leds
phototherapie leds Un appareil hollandais (http://bililed.com)

L’encombrement et la difficulté de transport de ces appareils restent encore un gros problème !

Innovative project of the French Crigler-Najjar Association (AFCN)

  • - 2010 -2012 : The AFCN has initiated, financed and collaborated to the realisation 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.
  • - 2015 : The clinical trial is starting on patients.
Photothérapie -drap lumineux (fibres optiques + leds)

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