New member and my baby with Linear IgA dermatosis of childhood

[Blisterbaby]

Hello Everyone
My 22month old has Linear IgA Dermatosis of Childhood diagnosed in Dec 2008. I am wanting to hear from others who have children with this Disease. I am struggling to control it and it breaks my heart when I can't help her. Any support would be greatly appreciated.
Has anyone seen a natural path for help? Anyone find food allergies are a culprit. We have her on a Gluten Free diet but we don't know if it has made a difference.
Thanks for the help
Deena

[anniemary40]

Hi Deena, your welcome to the gforum... i'm sorry to hear about your baby and i hope someone comes along soon with some advice for you    annmarie

[totalfolly]

Hiya, Deena, and welcome to SkinCell!

I'm so sorry to hear about your child's condition.  Advice I don't have, but support is plentiful around here.  Hope someone comes along soon who can answer your questions.

totalfolly

[LIGA girl]

Hi Deena

I am sorry to hear your baby has this disease, the good news is that linear iga in children has a good prognosis, it usually only lasts about 18 months I think and then clears for good. See this link for a good overview of the disease, especially as regards kids....

http://emedicine.medscape.com/article/1063590-overview

I see a derm who specialises in blistering diseases and she was once talking to me about a child with linear iga and that her advice is that they have to be put on drugs to get it under control. IF it is bearable without drugs, you can use cortisone cream topically and some less severe treatments can include antibiotics and vitamin supplements. Some of these treatments have been outlined here on skincell, you could do a search for them.

How bad is your baby's skin? Keep us posted on how he goes .....

Kind regards
LG

[Blisterbaby]

Well Thanks everyone for the post.
Hanna has it really bad. She is covered from Head to toe. The only area at this point is the palms and backs of her hands. She even has them on her eye lids, feet, head, vaginal area, ears, you name it she has a blister on it. Most journals say only particular areas are affected but not her!
She is on Dapsone 11mg (had to decrease the dose b/c it was putting her bld work out of wack) and Topicort (topical ung) for her body and Hydroval (topical cream) for her face. Since the decrease in Dapsone the blister are coming out fast and furious. We live 8 hr drive away from a major hospital. So trips have been challenging (we also have a 4 yr old all be it healthy but it's been tough for her too)
Our research shows average length for the disease to go into remission is 2 yrs but rarely last until puberty. So we have 2 months down!! and hoping for the 2 yrs or less of course. I have read some reports of people going blind so we watch her very carefully for any eye changes.
We also have her on a Gluten Free diet as some studies show this may help. We are thinking about taking her to a natural path so some more opinions.
Deena

[CazAngel]

HI and welcome.. I am so sorry to hear about your baby struggling with that condition. I don't know too much about it, but I have heard that infantile and adult cases of the condition can vary. I hope Liga Girl is right about it running a course. Feel free to look around the forum and be as active as you'd like. I know this is probably very little or no comfort, but I'm always around in you just need to vent or talk. Take care... Sending my very best wishes to your baby and you.

[LIGA girl]

Hi Deena

it does sound as if your baby has it badly, and the dapsone doesnt seem to be working effectively enough. I couldnt tolerate dapsone either and the next one they tried on me was sulfasalazine which I had a bad reaction to, it is sulfur based as is dapsone so I cant take sulfur based drugs anymore.

In the end what brought mine under control was a 3 drug combo of a long term immunesuppressant (imuran), prednisone and an antibiotic. It sounds as if Hanna needs to add another drug to what she is taking or to change altogether. I am now on Cellcept and prednisone, all my story is in my journal but it is too long to read now.

You are right that there are risks if the disease is out of control, as well as it being very uncomfortable. My derms belief is that you wont get it under control if it is not aggressively treated, I know she mentioned imuran in relation to the child she talked to me about but she said that many doctors dont like to prescribe such meds for children, but it is her belief that it is required. Linear iga is so rare that they know very little about it, they really cant promise anything.

I tried a gluten free diet for 9 months and it made no difference. In the end I gave up as I didnt want to feel like a patient all the time and I could see no benefit from it. I have a few family members who have coeliac disease and the associated rash so there may be a connection, I dont know.

You can do wet dressings using the creams, it brings a lot of relief, but you need to check with the doc if it is OK with her being a baby and the type of cream you have.

I would see the derm again if I were you or ring them and say that her skin is very bad, they may recommend trying something else. I am happy to answer any questions you have Deena and am interested to hear how Hanna goes, I know how difficult it is when you get something like this and treatments dont work and the docs are often not that understanding either .....

Best wishes
LG

[Blisterbaby]

Well Let me give you an update. Things are getting worse. She broke out in about 100 give or take a few overnight!!. We live 8 hrs north of Edmonton AB which is the closest Dermatologist. We just got back from seeing her and she wants to start her on Prednisone. The issue is that my other daughter and myself are just getting over Strep throat. Hanna has pus on her tonsils so we have to wait for the swab result. WE can't start the prednisone if she has strep. I am hoping it helps as she has been on benedryl and atarax daily now for 2-3 months. It can't be that healthy to do that for that long. We started supplementing her with 800 units of Vit D and Epsom salts baths 1-2 X Daily. They seems to be helping
Has anyone tried Ambrotose by Mannatech? It is suppose to allow the cells to communicate better therefore helping the body stay or become healthier. I'm thinking about trying it for her.
Anyways better run
Deena

[LIGA girl]

Hi Deena

I was wondering how things are going with your daughter, I am sorry to hear she is doing so badly.

I had  Mannatech recommended to me by someone who hadn't tried it, so I looked it up and on Wikipedia it is not really presented as a cure, it is more a preventative thing and there is also a courtcase proceeding against them for fraud so I decided not to try it, it sounded like snake oil to me.

It is really important to bring the Linear iga under control, that has been said to me by both derms I have seen, and a combo of prednisone and a long term immunesuppressant like imuran or dapsone is a fairly standard treatment, what is she taking now? I know she cant start on prednisone until she is cleared of infections but once she starts it you should notice a real improvement, as you say it is a drug with many side effects, but sometimes you have no choice.

Did you try the wet dressings with cortisone cream or ask about them? When I was in the early stages of my disease and it was out of control I felt so much better with the wet dressings and an antihistamine, phenergan, and I still use phenergan nearly three years later with no ill effects that I am aware of. I can't tell you how much better I felt once I got this treatment, to have the non stop itching relieved felt like a new life had been given to me, and while I still have lesions and they do itch at night and at other times, life is so much better once that is relieved somewhat.

I am not sure why you are supplementing with Vitamin D but I know that one skincell member was treated for Linear iga with Vit D and an antibiotic and that was sufficient for her and she went into remission after about 18 months. I think this was Sal, you can look up her story on here.

I really hope things improve for your daughter soon, this disease is very unpredictable.

Kind regards
LG

[Blisterbaby]

Thanks LG
Hanna is on 15 mg Dapsone, 10 mg Atarax, and Childrens dose of Benedryl daily. I was at an in service (I am a RN) about vit D deficiency especially up where we are (close to the 60th Parallel) and reports are saying that children should be getting 1000- 2000 units of Vit D per Day. Currently the RDD is only 400 units. So I'm giving both my girls 800 units. The Dr's hesitate to put her on an immunosuppressant b/c of her age if they don't have to. During the day she is really good but at night she is doesn't sleep well. They will put her on 10 mg of pediapred. They told us to us salt water (Epsom salts) baths. Her face is better but there is about 15 new ones yesterday, but her back, legs, arms are really bad.
Thanks for everyones advice
Deena

[CalamityJane]

Hi Deena: Sorry to intrude into your thread, but noticed where you are living. Close to the 60th parallel, you must be very close indeed to the NWT border, or thereabouts. I live on Vanc. Island. I can appreciate 100 fold how difficult it is for you to get your child to a doc, and/or Derm. I can only imagine the difficulties you face on a daily basis, let alone w/this huge complication. I'm so sorry you are having to manage this w/your beloved child in what can be a harsh environment. It's a blessing you are an R.N.

 
Jane

[Uncle Matt]

Hi Deena!

Welcome to Skincell!

Hope your little one starts to feel better soon

Kindest Regards

Matt

[Blisterbaby]

Hello
Yes we live very close to the NWT border. We have started her on Ambrotose by Mannatech. There has been good results in our community for other diseases so I thought we would give it a try. So we also have to start Amoxil for strep throat and will start the prednisone this week too. Don't really want to but..... 
Cheers

[LIGA girl]

Hi Deena

I think you will find that the prednisone has very quick effects, I hope so, let us know how Hanna goes on it.

LG

[Blisterbaby]

Just an update.
Hanna has been on Ambrotose (natural product) and Prednisone for 1 1/2 -2 weeks now and she look amazing! She is able to sleep without the use of Atarax or benedryl. Her face is just a bit red as the old blisters have a left a bit of hyper-pigmentation and her legs still have active blisters. She still breaks out in 1-2 blisters a day but they are small and crust over by the next day. I hope this will allow her skin to heal before another major out break occurs. WE still bath her with Epsom salts and still apply the steroid creams on the active blisters. I am so relieved. We are all getting some sleep which makes a world of difference.
Cheers

[totalfolly]

I'm glad you've found something that has helped! 

totalfolly

[Nick]

Hello
Yes we live very close to the NWT border. We have started her on Ambrotose by Mannatech. There has been good results in our community for other diseases so I thought we would give it a try. So we also have to start Amoxil for strep throat and will start the prednisone this week too. Don't really want to but..... 
Cheers

Interesting enough, Mannatech has just come up on my radar for a slightly different reason so I decided to do some hunting. 
Are they the same guys that feature quite poorly on Wiki ?
http://en.wikipedia.org/wiki/Glyconutrient

[aliciab]

Hi Deena, so sorry to hear about Hanna my heart goes out to you both. I don't want to depress you further but my grandaughter developed lga 8yrs ago she is coming up for 11yrs of age and has never been free of it since. I will ask my daughter to send you a message as she can tell you more concerning drugs ect. I hope Hanna responds well to her treatment. Take care. Regards from Lynn.

[CalamityJane]

It is good news indeed to hear about improvement!  Please let us know how things progress on the Prednisone.

 
Jane on Vancouver Island

[LIGA girl]

Hello ladies

I remember my derm telling me that if the patient responds well to treatment that they have a better chance of a complete recovery. She convinced me to take higher doses of prednisone with this argument as I was reluctant to take it at the start and I had trouble with the other drugs I was given, I found I am allergic to sulfur based drugs, so that also impeded my progress as they are the first lines of treatment. I have had mine for 3 years now .... so from that I would  say it is important to find a treatment that works for you and to stick with it
kind regards
LG