Crigler-najjar diagnosis any other parents with similar?

[sarah_k1186]

Hi my little boy has just been diagnosed with crigler-najjar, he is 9 weeks old. I'm desperately trying to find other parents who have experience of this rare illness for some reassurance and advice. At present were not sure of severity of it but at present it is being controlled with phenobarbital and occasional phototherapy. Would love to hear from other families dealing with similar. Thank you.

[Hidden]

Hi Sarah, I see that you have posted on the CLDF Facebook page, I will reply to you on there, regards Jacquie

[pujatitly]

can you please tell us about crigler najjar, I am totally unknown to it

[majidshehzad]

Hi first of all best wishes for good health of your little boy. My daughter who is now 8 years old was diagnosed with severe Criglar najjar syndrome from birth. She was trialled on phenobarbital and phototherapy. Phenobarbital was later stopped but she was continued on phototherapy but its time duration was continued to increase as the skin gets thicker with age and so phototherapy can become less effective. When she was about two years old she required liver transplant. After this her bilirubin level is normal. She now only requires lifetime immunosuppressant which is much easier to manage as compared to being in bed for phototherapy.