My 12 year old son was diagnosed with HIES at the age of 2. He has severe Eczema and various food allergies (milk, eggs, peanuts, and flour). He had RSV at 9 months old and developed Asthma right after. Since birth he grew at an extremly slow rate (he was only about 20lbs at 1 year) Today at 12 he is only about 3 1/2 feet tall. From the time he was 3 till the age of 6 he was on growth hormone injections 3 times a week but, he wasnt growing like he should have so they took him off of them. Then in January of this year they started him back on them 6 days a week but so far its a little to early to tell if they are going to work. In the begining Christian was in and out of the hospital all the time with lung infections and staph infections from his skin. So far we have been able to keep him from being in the hospital over the past few years and really our biggest struggle is his skin. He is very self concious of his skin because it basically covers his entire body. We have tried so many diffrent meds, creams and oatmeal baths to no avail. Its very frustrating to me that I cant do anything else to help him. I just recently started research again on the internet because a few years ago there was almost nothing to find about this condition. Its nice to know that we are not alone in this and there others who even have heard of HIES.. Most people look at me in confusion when I tell them what its called.

Hello. My son Sam (16) has Jobs/Hyper IGE Syndrome. And one of the things that used to really bother him was very bad excema, which was usually always infected and crusty and sore. This was before he was diagnosed with this condition and now he takes daily prophylactic antibiotics and antifungals. These are primarily to keep his damaged lungs free from germs but it also helps keep his skin lovely and clear from infection too. Occasionally he dabs Trimovate (steroid cream with added antibiotic agents) onto breakthrough patches, but this isn't very often.

What do the docs suggest about your son's skin infections? Of course we now know that the bad, infected excema is caused by our children's inability to properly fight infections. In his pre-diagnosis days, just like you, we tried all sorts of potions, lotions, oatmeal baths, wet wraps, etc. on Sam's skin - all with very limited results. Now it's washing in Dermol 500 antibiotic bodywash, moisturise with Diprobase and the odd dab of Trimovate, but like I said the main thing that helps Sam now his the regular medication. Would be interested to hear what Christian's medical people are saying about his skin.

Cheers, Ax

Hi Christian's Mom

I am 20 and have Jobs/HyperIgE. I was diagnosed when I was 12. Skin infections have always been a problem for me, although they are more so for my 16 year old sister who also has Jobs.

Like Alice and her son, after many years of my mum trying lots of different things with me, the only thing that really helps are antibiotics and antifungals. I was in hospital and on a high dose of steriods recently and my skin looked amazing (just a shame it couldn't last!) Sunlight also makes things better, as does salt water. I used tanning beds for a short period as well, which also helped.

I completely understand how upsetting it can be. I have scarring on my face particularly. I guess for girls its a little easier with the wonders of make-up but still. My skin has got better as I've come out of my teens (I used to detest people saying "she'll grow out of it"!) and although it's not perfect by any means, it is better and I've also come to realise that it's just part of who I am.