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  • Chronic Bullous Disease or Linear IgA Disease of Childhood

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    Old 10-05-2002, 01:45 PM   #1
    Bernie Lee
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    Question Chronic Bullous Disease or Linear IgA Disease of Childhood

    I'm posting this message also in the Immune Disorder forum as this is also an autoimmune system disorer.

    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

     
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    Old 11-22-2002, 11:58 AM   #2
    PMcDonald
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    Bernie,
    My 5 year old granddaughter has Linear IgA Dermatosis Disease of Childhood. She was diagnosed on her 2nd birthday. The last 3 years have been very frustrating. She is now on dapsone and CellCept, and has had a GI feeding tube for two years. She is rarely blister free. She is having problems with her eyes (corneal scarring) and is very light sensitive. I wish I could tell you something positive about the treatment of this disease, but we're still searching. I just wanted to let you know you are not alone. You and your son are in my prayers.

     
    Old 01-05-2003, 04:17 AM   #3
    JUDY TARVER
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    Hello I am a 62 year old grandmother and I have what is called Bullous Pemphigoid it sounds like something of the same nature as your son I have only had the disorder for about a year I have the blisters on both lower legs and you are right it seems they never quite go away I am still trying to find more info on the disorder and what might give a longer down time from itch and blisters
    I am so sorry to hear about the baby maybe help will be on the way for both of us soon
    you have my prayers and Gods Love
    judy

    Quote:
    Originally posted by Bernie Lee:
    I'm posting this message also in the Immune Disorder forum as this is also an autoimmune system disorer.

    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
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    JUDY

     
    Old 08-02-2003, 09:33 AM   #4
    ronanjronan
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    My 3 year old son has been diagnosed with Linear IGA disease also known as chronic bullous disease of childhood, i was wondering if anybody had any information on the progress of this disease and what maybe in store for my son. He has had it for 4 months now and at the moment (in the last week) he has become blister free but we are not seeing the specialist until august so we have no one to ask any questions when we see our own doctor he says he doesn't know the answers to my questions.

     
    Old 08-08-2003, 01:46 PM   #5
    ronanjronan
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    My sons blood tests have come back ok so we are going to increase the dose of the new tablet and decrease the steriods and hopefully no new blisters will form. I have yet to speak to anyone who has knowledge of this disease so if anyone out there can shed any light on this for me i would be grateful.
    Hopefully yours
    ronanjronan

     
    Old 09-02-2003, 02:22 PM   #6
    Noni
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    To RonanJronan
    I have a little boy of 3 who was diagnosed with linear IgA 6 months ago. We have tried prednisone and now dapsone with some success but he is never blister free. We are also trying the alternative route with toxin testing with some success. The pattern of the disease is now changing, instead of being symmetrical most of the blisters are on his right side. I'm not sure why.
    I'd like to hear how you are getting on.
    Also is there anyone out there who has been through this and came out the other side? What are the long term consequences?
    Thanks'
    Noni

     
    Old 09-22-2003, 06:13 AM   #7
    ronanjronan
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    Hi Noni
    Thanks for posting - it would be nice if we kept in touch even if its just to spur each other on as its such a rare disease. My little boy is doing ok at the moment he is on steriods and a sulpha type tablet and we are trying to wean him off the steriod but every time we do up come some more blisters although they are not as bad as when they first arrived. My skin specialist says he is trying to find out more about dapsone as they dont do it in tablet form in the correct childrens dosage for my son. Could you tell me more about the toxin testing as i have heard nothing about this before. The specialist says he should grow out of it in 4-5 years time - I do hope he is right.
    Hope to hear from you soon
    Regards ronanjronan

     
    Old 09-24-2003, 12:40 PM   #8
    Noni
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    Hi Ronanjronan
    We have deen using dapsone for about 6 months now with success. It doesn't come in small enough doses for us either, so we cut the tablets. The dose at the moment i
    12mg per day, and we get either 25 or 50mg tablets which are very easy to cut. Dapsone is a much safer drug long term than the steroids. Once the dapsone is monitored weekly and then fortnightly and so on by blood tests to watch for any side effects. I was very worried about dapsone at first after reading about it on the internet and seeing all the side effects it can have. Our boy has had absolutely no side effects. At the moment he only has small blisters on his face and neck considering a few months ago his body was covered in large clusters.
    I also have looked into alternative route through immunology or homotoxicology. This person tested both myself and my son as she thought I may have passed on toxins while pregnant with him. She found that we both had bacterial infections, mercury toxins, and toxins in the liver,kidneys and appendix. We both went on a detoxifying diet and on some homeopathic remedies. We started this more or less at the same time as the increased dose of dapsone so its hard to say which is working,or both maybe.The alternative route may not be working but at least I feel like I am doing something, anyway, a little healthy eating never hurt anyone and I lost some weight in the process!
    Hope this is of some help to you
    Noni

     
    Old 10-04-2003, 01:46 AM   #9
    ronanjronan
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    Hi Noni
    We went to the combined clinic this week and my son got looked at by about 20 drs and they have now decided to put him onto Dapsone. The dr says he will contact me soon by letter explaining everything and sorting out blood tests. They said again that shildren with this disease TEND to grow out of it between 3 and 5 years after the first eruption. Thanks for your last posting explaining about the toxicology, perhaps its something i should look into. My son has become very itchy of late again so i hope that is not a sign that the blisters are returning. I'll just have to keep my fingers crossed i suppose. Let me know how things are going with you.
    Look forward to hearing from you soon.
    ronanjronan

     
    Old 11-17-2003, 08:17 AM   #10
    ronanjronan
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    Just to let you know the dapsone has not made any difference to my son and that i still cannot get him off the steriod so if any one has any advice i would be pleased and grateful to hear from you

    Thanks

     
    Old 12-05-2003, 02:45 PM   #11
    Noni
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    Re: Chronic Bullous Disease or Linear IgA Disease of Childhood

    Quote:
    Originally Posted by ronanjronan
    Just to let you know the dapsone has not made any difference to my son and that i still cannot get him off the steriod so if any one has any advice i would be pleased and grateful to hear from you

    Thanks
    ronanjronan
    Sorry to hear about Dapsone not working as it has been working quite well with us. Our son has been getting some blisters in his eyes so we have to bring him to an eye specialist. hopefully there is no damage done. A while ago I asked our doctor what we would do if the dapsone didnt work. she mentioned something called Cellcept. I think its a form of oral chemotherapy, maybe its worth asking your doctor about it. How are you coping with the blisters? Are you putting anything on them, we havent found anything better than sudocream, sometimes nothing seems to help.
    noni

     
    Old 03-03-2004, 08:27 PM   #12
    irish34
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    Re: Chronic Bullous Disease or Linear IgA Disease of Childhood

    Hello Ronan and Noni---

    My daughter was diagnosed just 2 weeks ago with Linear IgA disease. We have been dealing with minor blisters since June 2003, but 3 weeks ago they spread all over her body like wildfire. Right now they are treating it with Erythomiocin and a topical steroid creme. It has worked....no blisters. But I knwo they will likely return and we'll go from there.
    I hope that you both are still out there and hopefully read this. I would really like to talk with you both.

     
    Old 06-05-2004, 03:03 PM   #13
    ronanjronan
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    Re: Chronic Bullous Disease or Linear IgA Disease of Childhood

    Hi Noni and irish34,
    Hope you still read these posts - just to let you know my son is on 5 dapsone tablets a day and is now coping pretty well - finally got him off the steriods!! Only a couple of relapses have occured. Please get in touch if you would like to chat.
    Love ronanjronan

     
    Old 06-09-2004, 02:05 PM   #14
    Noni
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    Re: Chronic Bullous Disease or Linear IgA Disease of Childhood

    Hi all
    Glad to hear things are improving. dapsone does seem to really keep it at bay. My little boy is now on 18mg a day and is keeping him more or less blister free. If a tablet is missed for a day or so they come right back. We hoped to wean him off the dapsone after 18 mths but we may keep him on it longer.
    noni

     
    Old 06-19-2004, 01:54 AM   #15
    ronanjronan
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    Re: Chronic Bullous Disease or Linear IgA Disease of Childhood

    Hi Noni,
    He's on 25mg a day of dapsone and we have the same thing that if he misses any they start to come back. Does your boy have any problems dealing with hot weather - our son seems to become worse in the hot weather. Glad things are progressing well with you, hope to hear from you soon.
    Ronanjronan

     
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