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I built this unit for my wife. She has Crigler Najjar Syndrome Type II, and was previously taking 100 mg phenobarbital daily, however, when we found out that she was pregnant, we decided to decrease her phenobarbital dosage. From all the help we received from the CNS Support group, and the different doctors we were able to contact, we decided to try phototherapy units to try to keep her bilirubin levels down. We first tried the Olympic Medical Model 66 Bili-Lite, which has 4 of the 2 foot blue bulbs, however that did not provide enough of a therapeutic benefit, so we upgraded to their Model 33 unit, which had 8 lights in it. We also started her on a low dose of phenobarbital (30 mg). It was around this time that i read about Mr. Carmicheal's "sit-up" bililight unit. I used his plans and with some modifications, made this unit for my wife. Now instead of sleeping under the light for 8 hours a night, she does just an 1 1/2 hour during the day while wathcing tv or reading a book, and it had not just kept her levels constant, but also decreased them.

Her levels when she was on 100 mg phenobarbital hovered around 8 mg/dl.

Her levels shot up to 15 mg/dl when we stopped the phenobarbital and started the 4 light unit.

Her levels started to decrease to around 10 mg/dl when we started the 8 light unit along with the low dose of phenobarbital.

Her levels are now around 7 mg/dl with the light-box unit and 30 mg of phenobarbital.

The unit itself consists of 10 four foot Blue Bulbs (F40T12/BB) on the back, an exhaust fan, and a fan to keep my wife cool. The front unit is composed of 10 two foot Blue Bulbs (F20T12/BB) and an exhaust fan. I put mirrors on the sides and bottom of the unit to help reflect the light through out the unit.



Update - Madiha and I were blessed with a daughter, Minha Miriam Ahmad, on April 7th,2005.

Update - We were blessed with our second daughter, Inaaya Iman Ahmad, on January 1st, 2009

 

 

Links :

Crigler-Najjar Syndrome

Crigler Najjar Association of America

Crigler Najjar Syndrome

Case Reports
















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