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Discussion Starter #1
Hello everyone
I joined this forum b/c my 22month old has been diagnosis with Linear IgA dermatosis of childhood in Dec 2008. I am struggling to keep the outbreaks under control. She is covered from Head to toe with blisters. My heart breaks for her. I am hoping that there are other children (their parents) on this forum to connect with.
 

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Hi dear,

Welcome to SCT. I am so sorry to hear about your baby. I really feel for you and I am sure there are many people out here who will be able to help you in your situation.
All the best and good luck.

Pumi.
 

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Hi ya and welcome, so sorry to hear about the baby and I hope you find what you are looking for through the forum!! take care
 

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Discussion Starter #5
Thanks for the Posts
Hanna is on Dapsone (oral) and Topicort and hydroval (topicals) but we had to decrease the dose of Dapsone as her bld work was going out of wack and since the blisters have come on full force. She is on a Gluten free Diet which we are not sure if it has help or not but will continue for a bit (my husband has Celiac so it's not an inconvenience for us). Linear IgA will eventually go into remission but could take 2 yrs or until puberty. The IgA line up at the basement membrane of the skin and then the dermis and the epidermis separate which causes the tense blisters which is why they are painful.
 

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Welcome! I would recommend adding more Folic Acid, into your daughters diet. Also, find a good natural all purpose healing salve with comfrey and calendula to apply to her skin or aloe vera gel . I would also, recommend staying away from sodium lauryl sulphate (SLS)! You might want to change your products, to all natural or organic. Your daughter has an auto-immune disease and will just clear up on it's own. Your daughter would be better off fighting this disease off with natural or organic products in her life. Make sure she's drinking good water!! No tap water, with floride! Floride and Aspartame are poison!! Natural Floride is good, but it's different than what they treat city drinking waters with. Also, most city water is recycled sewer. Yuck!! You can find information on Aspartame on Youtube...

!! I would also use Baking Soda to wash her clothing in. Well, I hope some of this information helps...Good Luck!
 

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Discussion Starter #7
Hi Everyone
Thanks Soap lady for the advise.
We us all eco-sense products for all household cleaning and laundry. I hadn't thought of baking soda for Hanna's laundry. We also use products that are SLS free. They do have ammonium lauryl sulfate (plant derived). Is this okay in your eyes soap lady? Aspartame free is a must. We try and avoid it as much as possible.
Hanna's face is covered today. WE need to try and increase the Dapsone again. For the last week she seems to break out in at least 10 new blister per night. Her blankets are covered in Blood in the AM b/c she sleeps on stomach and rubs her face. I noticed a blister inside her nose. I hope this doesn't mean it will go into her mouth. I have a call into the pediatric Dermatologist/ pediatrician to talk about this. My other daughter is just getting over Strep throat and scarlet fever. I really hope Hanna doesn't get it. We are going to start Omega 3's and vit D and looking for a new multiple vit with a higher Folic acid supply.
Cheers to everyone
Deena
 

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My heart goes out to you Deena. I suffered from an extreme case of eczema when I was a baby up until the age of 9. My mom put gloves on me to keep me from digging at my skin at night (bloody sheets every night). It was REALLY bad during January and February. Then I just grew out of it - like magic. But I have several faint scars from skin lesions that are 25 or more years old.

I think the whole ordeal hurt my mom so much more than it hurt me because she felt like she couldn't protect me. But she was protecting me - and I knew that. Hang in there!
 

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Hi Everyone
Thanks Soap lady for the advise.
We us all eco-sense products for all household cleaning and laundry. I hadn't thought of baking soda for Hanna's laundry. We also use products that are SLS free. They do have ammonium lauryl sulfate (plant derived). Is this okay in your eyes soap lady? Aspartame free is a must. We try and avoid it as much as possible.
Hanna's face is covered today. WE need to try and increase the Dapsone again. For the last week she seems to break out in at least 10 new blister per night. Her blankets are covered in Blood in the AM b/c she sleeps on stomach and rubs her face. I noticed a blister inside her nose. I hope this doesn't mean it will go into her mouth. I have a call into the pediatric Dermatologist/ pediatrician to talk about this. My other daughter is just getting over Strep throat and scarlet fever. I really hope Hanna doesn't get it. We are going to start Omega 3's and vit D and looking for a new multiple vit with a higher Folic acid supply.
Cheers to everyone
Deena
I've been told, that ammonium lauryl sulfate in high concentrations, can irritation the eyes and skin. Here is a link to a site, that lists all of the 80 different disguised names for SLS. This lady did a very good job with her research...
Good Luck!

vital to your health
 

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Hi Blisterbaby! I can completely sympathize with you - my son was diagnosed with LIGA when he was 18 months old. He just turned 3 on 3/1 and we are still dealing with it. When it first started, he would get blisters all over his arms, legs and face. He was put on Dapsone and Prednisolone and was able to wean off the Pred. about 6 or 7 months after he started it. Now he is just on the dapsone along with topicort and aclovate ointments. I wish I could tell you that it has gotten a lot easier, but we are going through a bit of a rough patch right now. In addition to the arms, legs and face, he also gets blisters on his scalp, groin area, hands and feet, rims of his eyelids, and inside his nose and mouth. It is very frustrating and so sad to see your child suffering.


I hope Hanna is doing well and I would love to correspond with you some more if you'd like (I don't know anyone else who's child has this).
 

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Discussion Starter #11
Hey Greybear what dose of Dapsone is he on? What was the starting dose of prednisolone? Hanna is covered, every inch of her body!!
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.

Deena
 

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Blisterbaby - Grayson takes a 25mg Dapsone every night. I had to look back at the little notebook I kept when this first started, but the starting dose of prednisolone was 5mL a day. It took a long time for him to be able to taper off the pred, but it was a godsend. He started the pred. about 9 nine days after he was diagnosed because it was just getting to be too much - he was covered in blisters and getting more every day. I called the derm just crying because it was so awful. That's when he said to go ahead and start the pred, and it really started helping immediately. He would still get new blisters while he was on it, but nothing like before he started it.

I feel so awful for you and Hanna! I know what an frustrating disease it can be and I've probably said a million times (I know I just said it earlier tonight) that I wished it was me instead of him. I can't believe your nearest derm is 8 hours away - that is terrible!! We were at the derm so much in the beginning and still now, about every 2 months unless there is an emergency and we need to go sooner. I hope the strep results come back quickly and she is able to start the pred. What is atarax? We never did epsom salt baths, but I did get some coconut oil to use as a moisturizer after his baths. It worked really well and was even a little soothing. I would also give him Motrin for pain when he needed it.

I have heard of the Ambrotose but have never used it. Let me know if you try it - I would love to find something like that that could help. Have you been to skincell.org? There is a forum there that has a long post about LIGA. Maybe there is some info there that could help you. I have had a hard time finding any other parents of kids that have this disease. It is hard since it is rare and there is not a lot of information or support. If you ever want to email me, feel free. amandacbryan @ gmail. com

I hope you and Hanna both get some relief soon.
 

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Discussion Starter #14
Hello
So Hanna has Strep throat. So we started the Amoxil and will start the Prednisone in a few days. She has had issues on and off with infections so we couldn't start prednisone sooner. We have started her on the Ambrotose by Mannatech so we will see. I know there is lots of controversy over the company but there has been some positive results in our community for other autoimmune diseases as well as other conditions, so we'll give it try. Atarax (Hydroxyzine) is used for itchyness. Thanks for the Xango Mangosteen suggestion I'll look into it. She is on 15mg of Dapsone and we will increase it soon if the prednisone doesn't help. She seems to be sleeping better. Every time the blisters start to go away I cross my fingers that this is over and then get disappointed when she breaks out again. We also still have her on a Gluten free diet. I don't see any difference being on it but the DR wants us to stay with it. I have also put her on Goats milk.
Cheers
 

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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
 

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Discussion Starter #16
Hanna has great looking skin with very few new blisters. She is sleeping through the night and has not had to take Atarax or Benedryl at night now for weeks. Her blood work is changing some so they are watching it more closely again!. Her Hgb has dropped again so the Dr has decreased the Dapsone. We are happy that she is feeling better and hope the Bld work balances out again soon
 

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Discussion Starter #17
So the blisters are coming back from being on a lower Dapsone dose. She is having trouble sleeping and we are giving her Atarax again at night. We are seeing the Dr again in a week.
 

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Update on Hanna
Well Things are holding there own. We have Hanna on 11mg Prednisone and 13.5 mg Dapsone. She still gets blood work every 2 weeks and handles that with ease. No tears at all. My amazing 2 yr old. We are 7 months into this CRAZY disease and really take it one day at a time. She goes a few days without new blisters then goes for a few days with an outbreak which varies in intensity. Most of the other drugs we have stopped using unless she has a larger outbreak. She gets cranky before an outbreak starts so that a good heads up. Hanna has started to get the Moon face but has not gained a LBS. That concerns me a little since it is one of the side effects of prednisone but I guess good for her sake.
Cheers
 

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Discussion Starter #20
So my little angel was almost blister free all summer BUT.... the prednisone started to increase her Blood pressure so we had to cut it back. Blister came back with a vengeance So know the DR has her on Colchicine (which is used for gout) Apparently it has immunosuppressant properties which should help and this way we can wean her off the prednisone. Has anyone else used this drug? What kind of results have you had?

Also Dr still has us on a gluten free diet but any research I see says it doesn't help. Does anyone remain on the GF diet?
Thanks for the help
 
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