Week one of withdrawal

We have also this week started an egg free diet for Evie as tests have come back positive for egg allergy!! It's been fairly easy so far but maybe that's because she is off her food a bit. She is also positive to wheat so that's the next thing to eliminate if no luck with egg!

Days 1-4 - The first few days of withdrawal started of with itchy, smelly and weeping scalp which got progressively worse over a couple of days. Evie was very unsettled at night time complaining of the weeping. I used talcum powder to try and dry up the patches as a quick fix and to make her more comfortable. 

She was well in herself and still able to go to school and even rode her bike one day. 

Day 5 - Dramatic decline in her well being. she was feeling pretty awful after having a particularly bad night as hardly slept. She didn't feel well enough to go to school so I kept her at home and she didn't move from the sofa as didn't feel up to it. Her skin started to get the red rash all over and her head was still weeping. 

Days 6-7 - Bad nights sleep again and she was feeling a lot worse than the previous day. Hot sweats but she feels cold in herself but hot to touch. Skin red and getting very dry. Evie's skin is very sensitive to the slightest touch. Very low energy and did not move from sofa all day. Trouble getting to sleep that night. 

She has bathed and washed hair every day this week as it relives her slightly. 

My feelings this week

Although I know we are doing the right thing I am feeling very emotional about it all. It's so hard to see Evie suffer so much like she did before and go through it all again. We are doing all we can for her but sometimes it's just not enough and we are at a loss as to what to do to help her. It's especially hard when she is crying in pain when we are just applying moisturises to her skin or when she is just so frustrated at feeling so poorly. This weekend my husband has spent time with Evie whilst I go out and entertain our other two children. They miss their Evie a lot and I know my other daughter desperately wants her big sister back and happy again. At times I feel guilty for having fun with them when I know Evie can't join in. But one day soon they will all be happy together. It's very early days but we will get there xxx

Welcome

First of all i would like to welcome you all to my blog and introduce to my beautiful daughter Evie who is six years old and suffers with Atopic Eczema. 

History

Evie has suffered for all of her short life with terrible eczema which has got increasingly worse over time. It started with a tiny patch on her face when she was just a few months old but started getting worse over time with her getting more patches over her body behind the knees, wrists etc etc. For this she was prescribed the lowest strength of steroid creams which cleared it up well. Over time she kept getting worse and worse and we kept going back to our GP who prescribed more creams with stronger steroids in. We also used various moisturisers daily. In a way this eczema was manageable as the creams we were using were working and were only used on small patches of skin.

Past seven months

Fast forward to November 2013 (Evie aged 6). Something significant changed and our poor Evie went from begin a happy healthy (apart from the eczema!) little girl to being a very poorly girl. She was just very 'ill' in herself and had no energy to do anything and didn't want to move off the sofa. She was Sweating and feeling cold but hot to the touch and no temperature  Her eczema seemed to be out of control and convered all of her body, but again seemed very different than before. Once again we had numerous visits to our GP and were prescribed more steroids and lots of antibiotics to try and clear up this infection. She was put on a course of steroids which helped over Christmas but this didn't last for long and she was admitted to Hospital in January for a few days and once again prescribed a very strong steroid cream along with antibiotics. Her skin at this time was red and flakey all over and she felt so ill in herself. A skin infection was diagnosed this time. 

She had a reasonably good few weeks but by the end of February she was back in Hospital again as once again we had tried everything and it still got way out of control and the symptoms returned  Her skin this time was weeping and she had open sores all over her body. In hospital she had wet wraps with topical steroids and moisturisers which helped a bit but not a huge amount. 

We were also at this time desperately awaiting an appointment at the Hospital with the Dermatologist and finally in Mach 2014 the time came. It was decided at this appointment to treat Evie very aggressively as it had gotten so bad again and really out of control. Evie was put on oral steroids again at a reducing dose and a long course of antibiotics for two months. We saw a dramatic improvement within days of being on the steroids and she had a few weeks feeling and looking the best she had for months which was such a relief for us all.

Unfortunately once again, this didn't last long and once she finished the steroids and antibiotics the symptoms all returned. This time she was also suffering for a long time with what we thought was thrush and we kept going back to the dr for various creams which didn't work. It then turned out to be infected Eczema so another course of antibiotics was prescribed but once again did not relieve her symptoms. She was sent to hospital for the third time in June to receive these intravenously. She left hospital again with oral steroids, antibiotics and topical steroid creams. She came home better but not great and once again the symptoms have returned a lot quicker this time. 

All along I have thought that what Evie was going through was more that just eczema but all the time we were reassured that yes she just has severe eczema. I just couldn't understand as we were following all the doctors advice but yet, still she was getting poorly and quicker every time. I just knew that once she had stopped all the medicines after a hospital stay that she would end up getting poorly again. Its a vicious cycle that we are all desperate to get out of!

Turning point - enough is enough!

All throughout the months of Evie being ill I have been looking a lot on the internet for advice and information about Eczema and for anything just anything that might help her! It was one evening a week or so ago that i was looking up how to relieve the oozing from Evies scalp that i came across a Blog about somebody who had what was called Topical Steroid Addiction / Red Skin syndrome. Reading this story about a little girl really caught my attention as it was as if i was reading about Evie! Everything was the same! Then I started to look up more about this illness and it just all made sense and I was convinced this is what my poor Evie has been suffering for all this time - Topical steroid addiction. The creams that were meant to be helping her and making her better were actually the problem and making her feel so ill!

So thats it from now on we are going cold turkey. No more topical steroid creams! Its going to be a long haul and its going to be hard but we have been through so much these last few months we can go through it again to finally cure my little Evie once and for all. I will be sharing our journey with you all too and she will come through this stronger and healthier than ever. We can do this together xx

For more information see -  http://www.itsan.org