New member and my baby with Linear IgA dermatosis of childhood

[Blisterbaby]

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

[LIGA girl]

Hi Deena

when you say Hanna has not gained a LBS I suppose you mean weight gain .... at the dosage she is on it may not happen, although her body weight would be low in proportion to the dosage of prednisone. Not everyone gains weight, but the higher the dose of prednisone, the greater the weight gain. I gained a total of about 15kg (2.5 stones) but have lost 12kg since being on a lower dose. I find that when I am below 20mg of prednisone  a day I dont gain weight and can lose it when I am below 10mg a day. It is good she is reasonable well controlled with her linear iga, I think that is a sign it may eventually abate altogether. I can understand her getting cranky before an outbreak too, I feel awful before an outbreak, cant sleep etc, then have to increase my prednisone to bring it under control again.

cheers
LG

[Blisterbaby]

Thank you everyone for the advise and wishes.
Hanna was (I state WAS) almost free of blisters this summer. But in Aug the prednisone made her hypertensive (High Blood pressure). We had to decrease the prednisone slowly over 2 weeks and hold at 6 mg. The blisters have come out in full force. SOO the Dr put her on Colchicine, commonly used for gout. It has immunosuppressant activity which the Dr feels that if it works we could get her off the prednisone completely. Her BP has come down but is still a bit High for a 21/2 yr old. She has been on Colchicine for 2 weeks now and it seems to be working. The outbreak has definitely slowed.
I sorry I don't post more often but I work full time and just plain run out of time !LOL
I'll try and keep in touch better
Cheers Deena

[Samewing]

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

Hi Deena

I live in the UK and my 3yr old daughter has just been diagnosed with Linear 8wks ago.  She is on Dapsone.  It is an awful thing to see happen.  How is your little one effected??? My daughter has it in her genital area, mouth, face, and now behind her eyes.  She has also contracted MRSA and Swine flu. Apparently they cannot tell what is the culprit as it is a rear condition in children "apparently".  Be good to hear back from you.

take care xx

Samantha

[LIGA girl]

Thank you everyone for the advise and wishes.
Hanna was (I state WAS) almost free of blisters this summer. But in Aug the prednisone made her hypertensive (High Blood pressure). We had to decrease the prednisone slowly over 2 weeks and hold at 6 mg. The blisters have come out in full force. SOO the Dr put her on Colchicine, commonly used for gout. It has immunosuppressant activity which the Dr feels that if it works we could get her off the prednisone completely. Her BP has come down but is still a bit High for a 21/2 yr old. She has been on Colchicine for 2 weeks now and it seems to be working. The outbreak has definitely slowed.
I sorry I don't post more often but I work full time and just plain run out of time !LOL
I'll try and keep in touch better
Cheers Deena

I'm glad she is doing well on colchicine, Deena, it was mentioned as a possible drug for me but I have not taken it at this stage. I hope she stays well.

Cheers
LG

[Blisterbaby]

I have not been on in a while. Hanna is blister free at the moment. She has developed about 5 what appear to be blisters but they don't go away. The skin has hardened over them. She did get new blisters on top of this funny spots. Weird.

A question was asked from Samantha about where she had blisters. They were everywhere from head to toe in every crank and cranny you can think of. Feet, genitals, hair, nose ..... the only place she has never had blisters is in her eye or esophagus.

We have a new issue added to the mix. 3 weeks a ago she had a high fever 40.6 (105.2) and a severe headache. A funny rash came under her chin from ear to ear which went away after 8 hr. The fever stayed for 7 days occuring only at night. Now she has had an episode of swollen Lt knee that caused her to limp and the following day extreme pain to Lt hip and continued with pain and swelling to Rt knee. She couldn't be moved with her screaming in pain.
Blood test were done ANA positive, ESR 27 (normal is 0-15), RA factor was negative. I wonder what's going on. We see the Dr next week but does anyone else have Systemic lupus on top of their LIGA?

bye for now