Chronic Bullous Diseases of Childhood or Linear IgA Disease of Childhoos

[Bernie Lee]

My son 36 months now was diagnosed with this disease 6 months ago. Inital 25mg of dapsone daily showed big improvement but did not suppress the rash and blistering symptom totally. The doctor then prescribed some prednisone to go along with the dapsone. There was initial improvement but the rash and blisters come back in worser extent sporadically even with higher dosage. It seems Dapsone has lost its effect even with higher dosage. The rash is pretty serious lately. It is very itchy and he can't sleep at night. We are worried about the side-effects of those drugs too, especially that affecting his growth.

Most articles indicate that dapsone and prednisone are effective treatment. But this is not the case for my son. Would like to know if there is any similar experience out there to share. Any other possible treatments than dapsone out there that can be effective ?

Any response would be very much appreciated.

TIA
Bernie

My daughter has had Linear IgA for 3 years and been on Dapsone the whole three years. We have had no luck with stopping the break-outs. We have one at least ever other month (she is never completely healed). She is no longer on predisone it never helped the situation. She is however taking Cellcept. She has been on the for 2 years and it supressed them better than Dapsone alone. Also Keflex (liquid antibotic) worked well to clear infections.
Factors that contribute to a break-out is stress and infections. We have had no relief in the occurance of break-outs and have not found a pattern.
I can tell you he needs to see an Optomologist because the disease does affect the corneas.
I apologize for not delivering good news. Please reply if you have any more questions or just need to speak with someone who has dealt with the samething.
I understand your frustration, confusion, and disappointment.
Sorry, Steph

[This message has been edited by moderator2 (edited 11-22-2002).]