Update on Evie!

Phew!! Things are still good!

Well its been a couple of months since my last post which i apologise for! Sorry its been so long! But like they say no news is good news and thats certainly how it has been for Evie! I am so happy to report that Evie is still doing great and its such a relief and pleasure for us all to see her finally well and being a normal seven year old again! 

It was a year ago that things started to take a turn for the worse for Evie and her eczema and back then i never imagined it could get as bad as it got. Poor Evie really has been through it but finally a year on she has come out the other side and I'm sure it has made her a stronger person inside and out and I am so so proud of her. I remember the days when she was at her worst she would cry in pain and sob saying "its not fair why have i got eczema, why me" i would tell her to repeat over and and over whilst holding her hands tightly "i will get better, i will get better, i will get better" and sure enough she did. There were some very dark hard days back then and those now seem like a life time ago. 

I think Evie has only had one day off of school since going back and that truly is an achievement. I know when she first went back to school it was very hard for her at times but she did so so well and has gradually got back into the swing of things and her confidence is growing and she is becoming the social little girl again that she was before. 

Michael jackson gloves are no more!

Last time i wrote i think i mentioned her hands were really sore but these are so much better now. I got her some cotton gloves but these became the next security item for her and she couldn't go or do anything without them! So we had got rid of the blanket and now had a new problem with the gloves! Im sure they helped her to begin with but in the end we decided they weren't helping her hands heal and they needed air. We kept telling her and so did family, friends and doctors to take them off now but she didn't and it was frustrating for us to see her suffering but not taking our advice! Well I'm not sure what changed but one day she decided she would wear them half a day and then take them off and thats what she did and then eventually didn't need them at all any more! So well done Evie she made her own decision about them and it really paid off!! 

Next thing to tackle is her going out to play at school! She goes out for a bit but we need to get her out all the time! The problem is she likes staying in with the ladies in the office as she just loves helping them! After all the problems we have had this truly is a minor one and it is just great to see her happy again. We will tackle this like we have everything else! 

Skin

Skin wise its looking great and she isn't red anymore. Amazingly it looks like normal skin and no scarring at all. Her face and torso are completely clear now and she only has a few patches on her ankles and wrists which is where she scratches sometimes in the night but this is nothing compared to what she had before. Occasionally her face gets a bit red but i think its more her skin reacting with the environment. 

At the moment we just use epaderm cream or ointment on the dry and sore bits only and don't put it on her 'good' skin. She is also having phototherapy twice a week at the Hospital but this is something i will write more about on my next blog "Evie's treatment so far". 

The future is looking bright! Roll on 2015

We are so looking forward to Christmas this year and Evie feeling and looking better. I think we will forget about 2014 as not a great year for us at all! (apart from moving house!) Im just so glad I found out about Steroid addiction and ITSAN website and stopped the drugs when i did as if i hadn't Evie would probably be on Immunosupressants now and a cocktail of other drugs. The thought of that scares me. No more drugs for my Precious Evie xxx

HAPPY CHRISTMAS AND NEW YEAR!! Sorry I know its early but I'm so looking forward to it this year!!! Yay!!  

My Next post will be on here in the next few days which will be about Evies treatments. 

Finally things are looking a bit brighter after 12 very long weeks! ;-)

Things can only get better ……………….

Its been a good few weeks since I last posted on here and that one was a pretty depressing post I must say! But I am so so pleased to report that things are finally looking a lot better for Evie and us all as a family! 

We had a very good holiday to the Isle of wight which I think really was the turning point. As usual I started to write a blog about our holiday but haven't yet finished! The days and weeks just seem to go past so quickly its crazy! 

Well I am so pleased to report that Evie is back at school! This is just a really amazing thing as the holidays were so bad i thought she wouldn't be able to go back. Like I said the holiday was the start of it getting better. Evie was still very reluctant to get up and do anything but most days we just made her! It was a case of be cruel to be kind and it really worked. It just got better and better every day. She was very reluctant to go out but once she was out we started to see the old Evie return! Outside playing and feeling happy again. Her skin was still quite sore and red but in herself she was well enough to play again. Still when she was inside she wanted to be wrapped up in her blanket but I felt she had deserved it as she had done so well in the day time! 

Back to school!!

When we got back home from holiday we just tried to keep on with the positiveness and encouraging her to do more. It was hard at times but we kept on and every day she would do more and more. Then it came to go back to school and we kept making positive references to it and not once did she say she didn't want to go so that was such a great thing to hear! 

First day back came and she was a bit reluctant but I think all children are after being off for so long so i reminded her of this. Id written a letter to her new teacher telling them all about her illness and what had been going on over the summer holidays. I then had a meeting with the school and we went through a care plan for her and what they can do to help her at school etc. This was such a relief as finally they knew all the ins and outs of whats going on with Evie and they are there to help in any way they can. For instance she is wearing tracksuit bottoms and a long sleeve top for PE and can change elsewhere so she doesn't feel uncomfortable. She is currently on an egg and gluten free diet and this is something the school can accommodate too which is great!

Her fingers are really sore at the moment so its been hard for her to write and concentrate as at times they become quite uncomfortable. Ive got her some cotton white gloves to wear from the chemist and these have helped her a lot. We call them her Michael Jackson dancing gloves! 

I also got her a school fleece to wear over her cardigan so she could feel warm as i told her she couldn't take her beloved blanket with her to school! She had been wearing it constantly even in the boiling heat but Friday last week she didn't wear it so I'm hoping we have turned a corner there perhaps? We shall see what happens tomo! Small steps! She took part in PE once and goes out at break but stays in at lunch but again these seem like very small steps but are massive things for Evie! Im so proud! Two and half weeks of school! Amazing! There have been a couple of days she has cried when I've left her but I've stayed strong and she has been absolutely fine. At times she is very sore and uncomfortable but they have all her creams at school which they can apply and these help her. 

Keeps on Getting better!

Although at times Evie finds it hard and lacks energy, still overall her energy is coming back and she is doing so much more! For instance she has been able to walk to town, ride her bike, go on a bungee trampoline, go the the theatre and lunch and best of all she has played yes played with her best buddy and sister! Sounds so silly but I can't remember the last time she joined in and just played an imaginary game! She was up wrestling with her friend (he's a boy!) then we had a disco in our living room and she loved it then played princesses with her sister! I could have cried very happy tears!! So good! Im just so proud of her and i hope every days continues to get better. Its like she needs to learn again how to join in and have fun!

Evie's skin

Evies skin as well is looking soooo much better. Probably to anyone else it still looks bad but to us as we see it every day there are definitely improvements and it just keeps on getting better. In particular her face is not swollen any more and is getting clearer every day. Looking almost normal. I think cutting out egg and gluten has definitely helped this as it improved very quickly once we eliminated these from her diet. The flaking has died down and we can see better skin all over. The Redness is still there and worse in some places especially where she scratches on her wrists and lower back and ankles but its definitely getting better. Still flaky but not as much! 

Nights are a lot better too and she only wakes a couple of times so she is getting more sleep. 

So all in all after 12 very very long weeks of withdrawal and nearly a year of Evie being poorly we are seeing improvements and Evie is feeling so much better!!! Whoo hoo! Please please let in continue xxx

Update - 24th September - Unfortunately Evie came home from school today feeling unwell and was quite upset. She was very upset going into school and didn't want to be left. Usually when she does this she is ok once we have gone but today she wasn't. Not bad going though considering she has been back for a few weeks now. Once home she didn't seem too bad so fingers crossed for tomorrow. I don't want her to slip back into that low lethargic ill place again. But you never know it could just be she is coming down with something else. Ive had a cold and her sister has a sore throat so we shall see …………………..

My next blog will be about Evies daily routine and what we are using at the moment and an update about latest Dermatology apt etc xx

Three long very hard weeks filled with lots of emotions :-(

Once again I've dipped in and out of this and not finished! Just don't seem to have the time or energy! However, things are starting to look better at last! We are on holiday at the moment in the Isle of wight so my next blog will be about that! More positive i hope! Sorry if this one is all doom and gloom!! Just my feelings at the time of writing! 

Ok So I haven't written for the few two weeks as to be honest its just been awful! Its been so bad living it I just haven't wanted to re live it on paper. The evenings come and I just want to try and switch off for a bit and not think about it as whenever me and Simon do get to talk its about Evie so the time I do have to myself Ive just wanted to relax the best I can, which in my case usually means tea and loads of chocolate! When I'm anxious / stressed / worried i always want to eat crap so I do. If it makes me feel better for a few minutes then its totally worth it.  

Ive been just waiting and hoping that she will get better in herself like she did in the first couple of weeks but unfortunately she just hasn't. In fact she has got even worse and most days she just feels so poorly with no energy and just wants to sit on the sofa wrapped up in her blanket and watch TV. She feels so cold in herself again, no energy and her skin is red dry and flaky as always. Sometimes she has weepy oozing patches and her sleep is still disturbed every night. I cannot remember the last time she slept through. Months and months ago. It really is just miserable for her and us all having to witness it. 

Like Ive said before Evie being ill has a tremendous affect on us all. Its the summer holidays but we haven't been able to do much at all and my other two children have really missed out on days out etc. It feels like groundhog day and we are stuck doing the same thing day in day out. Luckily we do have family close by so they have taken them out sometimes and that really helps to get them away from the home situation. Evie gets frustrated and so do I at times. We are too alike and end up shouting and screaming at each other as we are so both frustrated with the situation. She is fed up with me and at times I'm fed up with her! Honestly every day I go through every emotion going, happy, sad, angry, tearful, hopeful, amused, fuming, let down, frustrated etc etc i could go on and on! 

All of these emotions are really taking their toll on me and i feel like I'm going to explode sometimes. From the moment she gets up its just constant and like most mums i feel i need to escape! I can't even pop to the shops with them all or go to the park etc as Evie feels too unwell to go. So I have a serious case of cabin fever. What i have done a couple of times is go to the supermarkets once they are in bed so i can just have some me time! Sounds so silly but its lovely strolling around empty supermarkets late at night! Just gets me away from the home situation! I have also met with a friends a couple of times for a few much needed drinks!! the problem is I feel so drained and tired I don't feel like going out most of the time even when i can! I also find i don't want to see people as they will ask about Evie and sometimes its the last thing i want to do as all my emotions will come flooding out and I just want to forget about it for a while.

On top of all of this with Evie we have had to say goodbye to one of our cats and are trying to re home the other as Evie is allergic to them. Its been so hard for us doing this as they have been part of the family for 12 years now! So all in all not a good few weeks for us at all :-( 

Dermatology Appointment - So Frustrating!!!! Arghhh!!

This post was originally called "I hate Dermatologists" but i thought that was a bit harsh! 
Originally written a couple of weeks ago but I've only just been able to look at it again as its been a tough couple of weeks. I will do an update in the next few days about the last couple of weeks. 

Last Dermatology Apt in June At our last appointment in June we explained about topical steroid withdrawal and although she couldn't obviously agree with us she did say she knows of two other people who have done this and that as a Specialist Dr she has to promote steroids as thats what is used to manage the symptoms of eczema. We felt she had listened and respected us as adults to make our own decision as to what to do for Evie but she couldn't let us go away with nothing to treat her if it got really bad so gave us a prescription for Protopic cream and another type of steroid. She also went through the allergy tests and recommended cutting out egg first and then wheat and possibly dairy but we would see how she got on at the next appointment and go from there. We left this appointment feeling positive and hopeful and that we had a little support from her. We also had a plan for the next step in Evies care. 

Todays appointment 
Ok so writing this i am feeling very frustrated and angry right now after Evie's appointment today. We may as well have gone and sat in a room on our own for 20mins or watched paint dry as we got nothing out of it and it was a complete waste of time. I wanted to poke her in the eye! Unfortunately the main Dr that we saw last time wasn't there so we had to see a Registrar who doesn't know Evie as well. 

We went over the last few weeks and that we haven't used steroids and are doing it all naturally and have cut out egg as thats what was advised before. And our theory that maybe giving her egg has made her face flare again. 

From the last appointment there was meant to be an urgent referral to the Dietician but we haven't heard and she basically said oh there is a huge waiting list and basically we will just have wait. I said well we have figured it all out so far ourselves so we will do it again! 

She also went on about how we will probably never find a trigger for Evie's eczema and come back in 100 years! great help! and that only 5% of Eczema is dietary related which i really don't believe. 

We also went over why we are not using the steroids creams etc and how well Evie has been in herself the last few weeks and that she has only been ill again the last couple of days but I get the feeling she didn't believe us! As Evie looks and feels so bad she just took one look at her and thought she is having an awful flare up of her eczema and you guessed it said we need to be on steroid creams. 

She managed to be little us and write off all of our hard work for the last few weeks and it made us both feel so angry. She wasn't interested in anything we had to say and instead answered all our questions with text book replies with no empathy or emotion. Talked down to us as if we were stupid. 

This was an appointment to review and see how she has been over the last five weeks but all she saw was how she looked today and didn't listen to what we had to say. I just so wish Evie looked like she did five days ago when she was happy and playing in the pool!!!

My husband and i both strongly expressed our feelings about not wanting to use these creams again and that in the past nine months they have not helped Evie at all as have stopped working and seem to be making her poorly rather than better. 

Today made me question myself again in are we doing the right thing? But i then came to the conclusion that we have done everything they have told us to for the last few months and nothing has changed. Even if we were on the steroides now this would still be happening and Evie would still be getting ill. My theory is that we have nothing to loose and all to gain as eventually these nasty steroid toxins will be out of her body once and for all and we can finally treat just the eczema and find the root cause of it. 

We just want someone in the medical profession to support us in our choice as we, her parents know her better than anyone one else. We have tried every cream going to no avail so next step natural! So far i haven't found a Dr in the UK who recognises and supports TSW but I'm going to keep looking. There is just so many people going through this it seems just crazy its not more well known about. 

Week five and six full of ups and downs ;-(

Tues 22nd July 

Evie's skin really bad from itching in the night as had such a restless night. She did have a three hour lie in though so that's great she has caught up on some sleep. Gave her a bath this morn but oh my goodness you would think I was bathing her in acid! Screaming and shouting that she didn't want to go in the bath etc etc and acting like a toddler. Of course I understand it hurts and she didn't want to do it but I have to stay strong otherwise id be in Tears too! I did it though and got her in and didn't  loose my temper although had to leave the room a couple of times and count to ten! She couldn't put her wrists in as these are the sorest part at the moment and cried out in pain when even a little bit of water got on them! 

Her skin after a bath is so much better as it gets rid if all the dead flaky skin and she also then gets a full body massage with the cream so that has to be a good thing!! 
After the bath we had a really good day at home and Evie was really upbeat in herself and played with her sister etc. As usual though, just before dinner she got very itchy and tired. We tried tonight a new cream that i got in Boots today which is Zinc and caster oil cream. I applied it almost all over her body as wanted to try something different. So we shall see how her skin is in the morning. 

Wednesday 23rd July 
Last night she was still quite restless and called quite a but managed to lie in for a bit. When she got up she was happy and chilled for a bit then let me wash her hair with no problems! The new cream has really dried her skin out but thinking about it now i remember Zinc being good for the oozing patches so this makes sense as it would dry it up! I won't be using it all over again just on any wet patches! It really is all trial and error at the moment to see what is suitable and helps her so we shall keep trying. Her sore bits are particularly dry and sore still. 

In herself she is good again and in the afternoon we went to the park and she rode her scooter and played at the park. She again didn't want her legs and arms out even though its so hot and i tried to encourage her but still no. To be honest I'm a bit scared of her having them exposed as i know she won't be able to resist the itch!! She did put her jumper on and off a few times when we were out as she couldn't decide if she was hot or cold. 

There was a bit of a turning point this eve though as she called once she was in in bed to say that she is actually hot! This is amazing as she is usually under the duvet as far as she can go feeling cold, even in 25 degrees heat! She is finally feeling the true temperature. I hope it lasts. 


Thursday 24th July 

I slept through the night! I really can't remember the last time this happened! I feel more tired though :-(

We went to my sisters today and Evie was very excited to see her cousins. Before we went she was adamant she didn't want to go in the pool but to my amazement once we were there she changed her mind! I was so pleased although a little apprehensive but she just got right in it! She even put her wrists in which, bear in mind only a day ago she screamed the house down when the tiniest bit of water got in it! Every day is so different! Certainly up one day and down another! Once again she didn't want shorts and t-shirt on but she must be feeling warmer in the body as she was able to get into her swimsuit and not complain of feeling cold. Happy fun day! Yay! 

Friday 25th July

She did play out side in day and went to disco in the afternoon. She joined in a bit but then felt tired so had to sit down. 

Unfortunately she is Going downhill as not as much energy and at night she was weepy behind ears. Perhaps she overdid it yesterday? We shall see what tomorrow brings. 

Saturday 26th July 

Given the chance she would have spent all day on the sofa. Not good. Made her go up for a bath and she popped out with her dad though. She isn't feeling well in herself again and very low energy. Feeling cold again and wants to sit under blanket. 

Bath with Dead Sea salt helped get rid of dead skin. Very dry still. 

We decided today that as we are seeing the dermatologists again next week we will reintroduce egg and then see what they advise to eliminate this time. So for dinner she had normal pasta as i had run out of her one. 

Sunday 27th July 

Once again got up and didn't have much energy. She wanted to just sit on the sofa and watch TV. She did get a bit of energy and we went to her grandparents for a BBQ and she was okish there. Although, she is still not herself and unfortunately i think she is getting ill ill again. Felling cold and shivery but her skin feels hot. Her face is getting dry again.

She went to her cousins party at a soft play place this afternoon and she didn't want to join in until the last half hour as she just didn't a have the energy to. Im glad she did in the end and it was nice to see her playing with her friends. 

I feel very emotional today. Perhaps its because i know its getting worse again. It makes me realise how much she has improved these last few weeks and that i don't want to see her go downhill again as it really does affect us all so much. Although things haven't been great they have been much improved especially as Evie has wanted to join in and play again. I just hate seeing her lounge about feeling sorry for herself as thats not what a six year old girl should be doing. 

Monday 28th July 

She had a really good night the best for a long time and didn't call until 2am! And that was the only call to change her PJ's
She got up today and her face looked really dry and puffy and one of her eyes was more closed than the other. It seems when she gets poorly with a flare up, her face is the place to get bad first and she feels ill in herself too. 

We were meant to meeting up with friends today and when she got up she was keen to still do this but after her bath she just felt too ill to go out so i had to cancel. Its such a shame as this meant her sister couldn't go either as i had to stay here with Evie. 

Its like we are reliving week one again.

Its so frustrating as tomorrow we have the dermatology apt and i wanted her to be looking and feeling good like she has done for the past four weeks! it must just be a flare up again and i knew this could happen and will happen more before she is healed completely. Its just frustrating. 

Tuesday 29th July 

Evie got up this morn after having a particularly bad night and she really looked awful her face is so swollen and puffy she looks so different. Back to square one again unfortunately and today is the Dermatology apt!! I feel so nervous i don't want them to see her like this! 

She could be flaring and reacting like this as she has had egg again? Yesterday she had cake, pasta and a scotch egg! Is it too much of a coincidence for it not to be??!!! Who knows but i know for sure she is not having egg again! We are cutting it out again! 

All morning she spent in our bed watching TV as thats all she wanted to do. I look at the picture above which was only five days ago and she couldn't be more different today. Its crazy how in so little time things can get so worse again. I want that happy fun smiling Evie back. We just have to get through these bad days like we did before and thats what we will just keep on doing until she is better. We have to xxx

Weekend away at Legoland!

The Night before Legoland!
The night before we went to Legoland Evie was very very restless and actually got herself up and came into our bed in the middle of the night and this is something she has never done before! She said she felt ill which is what she said the night before too! Anyway she came in for a few hours and slept and then asked to go back to her own bed. She woke up ok and keen to go although was a little reluctant to have her hair washed but we got there in the end!

Day One 
The journey there was good and the Evie and her sister were singing Frozen songs full blast most of the way! Towards the end of the journey though she started to get itchy and her mood changed considerably. Not happy any more and moody and grumpy :-(. But once we arrived she was more upbeat and we gave her some paracetamol to try and relieve her itchiness a bit. Although it was a very hot day she wanted to remain covered from head to toe in long trousers, t-Shirt and cardigan. I didn't apply suncream but made sure she wore her hat all of the time. Legoland itself was very very busy but Evie and her sister were very patient queuing for the rides and walking a lot! At the end of the day though understandably Evie was very very tired and started the itch again! Her skin is so dry again and because of itching in the night has a few sore open patches. She actually fell asleep while out to dinner! 

As we were in a Hotel we were all in one room which was interesting! I started off sharing with Evie and she was just constantly itching herself and i tried to stop her by holding her hands or massaging her but it didn't really help. My husband then took over but Evie was still so restless. She actually itches in her sleep. So we all woke up tired and irritable apart from her brother and sister who slept pretty well considering we were in a room together!

Day two 
Once everyone was up and dressed we all felt better and went down for breakfast. Evie is looking a bit poorly again as she is so dry and itchy. We are applying Vasaline still but I need to find another moisturiser to use i think. Evie wanted to go to Driving school so we went there first and she did really well driving the car around the track!

Once again though she is dressed for winter as she is cold but if that makes her happy and comfortable I'm not going to argue with her! She was itchy again so we gave her some ibuprofen to help with this. The itching seems to be getting worse again but thats because her skin is so dry i think. In herself she is feeling ok although tired and she did get very upset at one point as the 4D cinema show she wanted to see wasn't on. This annoyed mummy as much as her as we had just literally ran across the park to get there in time! 

The afternoon was better though and we managed to get on more rides and do more and Evie was still ok and upbeat in herself. She was tired in the car on the journey home and uncomfortable and itchy so couldn't sleep. But I massaged her feet which helped a bit! 

Overall

So overall Legoland was a success in the fact that we made it there and Evie was well enough to enjoy it. She did so well walking around and queuing etc. I just hope she hasn't overdone it and make herself ill again. The Girls had fun so thats all that counts! ;-)

My advice to anyone planning to go to Legoland is dont go in the summer hols!!! Pick a quieter time to go. If busy it's worth paying for the qbot thing as you can get on a ride pretty much straight away and it saves queuing with young children! 

Week Four summary

Day 22 - Evie had quite a restless night. Had to go into her a few times for the usual problems, hot, hair up or drink. She Woke up though happy and wanting to go to school. Remained happy when she got home and didn't seem too tired.  Skin very dry still but not so red as yesterday. 

Day 23 - 27 - We have all had a very busy week as end of term etc so i haven't had time to record every day this week but they have all been pretty much the same. She is still ok in herself but skin still really dry and very itchy. Unfortunately the nights are getting worse again with her calling more frequently for change of clothes or that she is just uncomfortable. It doesn't help that its so hot at the moment and I think a lot of people are having trouble sleeping due to the heat. 

Evie wore a summer dress to school one day this week and it was lovely to see her in it again! However, she didn't want to wear it again! At the moment she doesn't like having her skin exposed and prefers to wear long sleeved tops and leggings to stop her itching directly. She has been happy to go to school this week and has been positive and happy after school too. 

Its so strange though as although it is ridiculously hot outside she is still cold in herself and often wraps herself in a blanket on the sofa. This is one of the symptoms of withdrawal that they can't regulate their body temperature and with Evie this is quite a significant symptom. Also the intense itch that she has is very common. I just hate watching her scratch but at time i know she can't help it. 

Im am a bit worried, as today (Saturday) she woke up and was slightly weepy behind  the ears and before bed she was feeling ill again. I just hope its down to tiredness as she has had a busy week and its not the start of a flare up again? We shall see tomo but already she is very unsettled and we have had to go into her a lot of times already. Could be another long night, but hey we are used to those by now! We are off to Legoland tomo so i really do hope she will be ok and up for it.

Please send Evie lots of itch free vibes and I just hope she isn't going downhill again. At least it's the summer holidays now  so she doesn't have to worry about school for a while etc xx

Week three of withdrawal

Day 15 - Evie had quite a good nights sleep and only woke once in the night for pyjama change. So we all woke up feeling quite refreshed! I mentioned perhaps she was ready to go back to school but she said no as a definite so i said maybe in a couple of days. In herself she is feeling a lot better but i think she is still tired from doing more at the weekend as she didn't want to do much today. At one point though she wanted to go upstairs for me to do her nails and for her to do mine but that didn't turn out quite to plan as we both got a bit frustrated with each other!! I think she is getting a bit fed up with being at home and at times so am I! Plus I have a one year old who has to get involved in everything too so it can be hard for us all!

her skin is still very sore and dry and she doesn't even like me applying the cream!

Day 16 - She got up today and asked to go to school! I am so happy! This means she is feeling good in herself again. She had another reasonably good night once she had settled in the evening with only one change of clothes again. Her attitude was great and she was excited to go to school! Her skin still isn't good still sore and very dry but her face looks a lot better and her scalp is improving too.
Didn't bath or wash hair today?!
She didn't seem too tired either after school but still scratching a lot.

Day 17 - Evie had a better night again and woke up ready for school. She is feeling positive and happy! In herself she is so much better. Her skin isn't so bad but still very dry and itchy. I think just using Vaseline on the sore bits is helping. Her head isn't weeping anymore. She is still scratching but not as much. Definately notice it more when she gets tired, upset or anxious. Bath and hair wash this eve

Got her school report today and it truly is amazing! She has done so well considering how much school she has missed this year!

Day 18 - Teachers strike day so Evie is at home and one of her best friends came round to play. The first day she has slept in and i had to wake her at 8.15! Shame I couldn't just let her sleep. Last night after Evie's last call at 11.30 we all slept through till morning! This truly is amazing as this hasn't happened in a very long time. As I had woken her it took a while for her to fully wake up and play with her friend! We then were out and about and she was fine but when we got home she was tired and wanted to just sit and watch TV. She then perked up enough to play again with her friend and was singing and dancing! I just love to see Evie like this as it seems she has been so poorly for so long.

Her skin is very very dry and its everywhere! I get covered numerous times a day and of course I'm hoovering like mad! Its become a bit of an obsession and I love nothing more than seeing how much has come up this time!! Its quite satisfying. Change her bed everyday as its covered too. Because her skin is so dry she is quite itchy and she gets so angry with us when we remind her not to itch which is understandable as i know she just can't stop. I encourage her to scratch through her clothes although she does directly scratch her skin which i hate to see.

Day 19 - Evie went to school again today which is great. Had a reasonably good night and only woke once to change PJ's as she is still sweating at night. Upbeat in herself and keen to go to school. Didn't seem too tired at dinner today but refused to have a bath so we agreed to do it in the morning instead! We shall see! Her skin is still very dry and has also got what look like red spots all over but are itchy. Her face looks pretty good though but her body really bad still.

It's the weekend tomo and on the menu is just to have FUN FUN FUN! As Evie feeling so much better in herself Simon and I just want to have a fun weekend as a family as its been a long time since we have all done that together!

Day 20 - Evie had a lovely lie in till 8.45 which was great! Usually when she can she never lies in so this is a great start to the weekend. Usually she has a swimming lesson on a saturday morning but i thought best to cancel that as her skin still so bad. She has had a good day and had her shower without getting too upset! She then rode her scooter to town and then in the afternoon we went to Drusillars Zoo! She has wanted a hair braid from the hello kitty parlour so as a treat we got her one today! She was very pleased!


Her skin still looks red and spotty but not so dry. What is strange though, is her palms of her hands and soles of her feet have started to shed! Its odd as these are places which have not been affected by the rash? Like blisters in places. Its like all over she is renewing her skin. The skin on her stomach feels very thin and plastic like. Her scalp is so much better too and only a scaly patch right at the base of her hair at the back.

Day 21 - She had another lie which is great she is hopefully catching up on some of her sleep she has lost over the last few months! She was well again in herself and we all rode our bikes to the beach. She did really well but got a bit tired so we had to come home for ice cream instead of having it on the seafront. She was happy to wear shorts and a t-shirt as up until now she has wanted to be covered up. Although her skin still looks awful as red dry and spotty i think it did it good to get some air to it. 















Notes  Not going to the toilet much at all. Drinking ok but this is probably due to the sweat.
Still doing an egg free diet and going well but not sure if its helped her skin yet as obviously we are going through withdrawal! 
Her patience is very low at the moment and she will try and get out of anything she doesn't want to do! Very winey which is understandable really.


Thank goodness for chocolate to get me through this! Im going through it like mad! 

Recap of last few weeks and how far Evie has come already!

I can't believe how far we have come in such a short space of time! Looking back now to week one she was so poorly in herself and i wasn't feeling very positive at all about this whole process and i questioned whether i was doing the right thing or not. 

The last couple of weeks have been hard but i think they are gradually getting easier as we all learn how to deal with Evie and every day is a step closer to being itch and steroid free! We have been getting up with her in the night for such a long time now so it just seems the norm but it is getting less frequent so i am sure one day we will all sleep through the night! I live in hope! 

Its been particularly hard as I've had my two other children to look after as well (a four year old and one year old). I have to still do the usual care for them as well as look after a poorly Evie so at times its been very hard to stretch myself three ways! All I want to do is look after my big girl Evie! But they have been so patient and good considering! 

We are Going to Legland on Sunday and at the start of this process i really thought she wouldn't be up to going but i think she will be ok. Although she still has bad skin its such a relief that she is well in herself again and will be able to enjoy it. 

Biggest change is that she is more upbeat and happy in herself and getting on better with her sister and she is not spending so much time on the sofa under a blanket! She doesn't feel so cold in herself as much as she did but when she does her body still feels hot. Her Skin is the next challenge as its still very very dry, sore and spotty. 

I know we still have a very long journey ahead of us to take control of her skin and we will still have ups and down but so far i think we have all done a very good job especially my little Evie xx What a true star she is xx

          Week one                              Week three

I think you will agree from these pics she has improved in the face already. Redness and swelling has gone and she is starting to get the sparkle back xx

Week two of withdrawal

Day 8 - Evie had a Better night as only woke once to change pjs as wet from sweat. She felt a bit better from having a good nights sleep when she got up. Skin is still red and has started to dry out and flake off. She has Some weepy patches from where she has been scratching.

She perked up a lot in the afternoon for about an hour and was able to sit up at the table and do her new sticker book and also walked around in the new flip flops which I had brought her!! She was very pleased with these and I am definaty in her good books now!! Who hoo mummy must have taste! She even managed to sing a few songs!  

Unfortunately she wasn't up and about for long but at least it's a start and a lot better than yesterday. Trouble getting to sleep tonight.


Day 9 - Evie had a better night and didn't wake up at all which is great! She didn't settle till nearly midnight the night before though but thats not the point she slept well so that was good. This morning she didn't feel great but perked up mid morning and went upstairs to get her flip-flops to show granny and grandad (she does still love those flip-flops!) and went on the laptop for a bit and played games and typed etc. She was perkier for longer today than yesterday so thats a good sign!

Her skin today is still very sore and flaky on her tummy. Her head hasn't weeped today which is good. When she gets tired she scratches! Settled quickly for bed but woke after an hour! Could be a long night tonight!

Day 10 - Woke up happier than yesterday. Morning she just sat and watched tv but perked up after lunch and even went outside and helped simon polish the car!! She is still loving the flip flops! No weeping head and skin is very sore today. Overall a bit brighter today which is good! Night time not so good took a long time to settle and up a few times.

Day 11 - Best day so far as she has been up most of the day and even out in the garden playing badminton and on the trampoline! Got tired and cold at dinner time though. So in herself she is feeling a lot better but skin still bad. Its not so red but very sore and flaky. Weeping neck. She is still at times really cold in herself but to touch feels very hot and sweaty. She has also been answering me back so i know she is feeling a bit better! Mind you id rather have cheeky madam Evie than floppy poorly Evie xx Went to bed ok but up till quite late that night but once settled not too disturbed.

Day 12 - Woke up quite happy and feeling a bit better. Skin very very dry today and itchy. Its still red all over with sore patches. In herself she is a lot better though and has been up to her bedroom doing my friends hair! She also was able to pop to the supermarket. She also felt up to going to play at her friends house for a couple of hours. But I noticed when she got home she was very tired and feeling poorly again so perhaps she did a bit too much today. As usual went to bed ok but woke several times during the evening. Weeping patches, hot and uncomfortable. 

Day 13 - Woke up feeling ok. Her skin really hurts today especially when in the bath. In that respect its getting worse as usually once in the bath it eases her symptoms and she feels more comfortable. Her skin is also very very dry. In the morning she didn't have much energy and just wanted to sit and watch TV. In the afternoon she perked up and was able to go to her friends party which was great! It was so lovely to see her happy and with her school friends even if it was only for a short time. 

Day 14 - Another better day. Evie is probably felling in herself the best she has so far. On the other hand though her skin is at its worse. She couldn't even manage to sit in the bath today as it was so painful so i compromised and just washed her down and didn't do hair. She has a lot of scratch marks on her skin from scratching in the night and these are quite sore. 

She felt well enough today to go to the shops for a couple of hours and it was great to see her happy and enjoying looking at all the girly things in the shops! She very nearly persuaded me to buy her another pair of flip fops!!

Notes -
Gets itchy when sitting by herself so needs a distraction
Likes massages on body and feet to relax her and stops scratching! 
Creams i have applied this week are diprobase, Aveeno and vasaline
In the bath we have used epson salts and dermal 600

My feelings this week

I have felt a lot more positive this week. A lot of this is down to the overwhelming support I have had from friends after I posted a link to this blog on Facebook. I wasn't sure whether to put it on or not but Im so glad I did. It has given others an understanding of what Evie has been through and what she is going through now. A lot of people didn't realise the extent of her eczema. It has definitely raised awareness and hopefully it can help others who are going through a similar thing. Lots of people have also shared their own stories of family and friends who also have eczema and have given me ideas of what we can try next. 

Evie has good and bad days and so do I! Some days I have patience but other days when i haven't slept so well (due to Evie being disturbed) my patience is tested! Its particularly hard when i want to get her dressed, put her cream on or get her in the bath as its so uncomfortable for her. But it has to be done so I stay strong although it is very hard at times. 

So overall this week she is a lot better in herself than last week and has more energy but her skin is worse. She looks in her face better than last week though and isn't red and puffy anymore. Im hoping she will be able to go back to school in the next couple of days. Nights are still quite bad but maybe getting a little better?! Im expecting the next few weeks to be up and down so we shall see what they bring. Cant believe already two weeks have passed! She is doing so well bless her xx

Here is a link to my Facebook page https://www.facebook.com/evieseczemaandtopicalsteroidjourney?ref_type=bookmark

Please give it a like!

What is topical steroid addiction and why Evie??

I thought here, I would just summarise briefly, what topical steroid addiction is and why I think Evie has it. When I first read about it, it was like someone had switched on a lightbulb in my head and everything we have all been going though over the last few months made sense for the first time. 

What is Topical Steroid addiction / Red Skin Syndrome?
Its a name used to describe the side effects of topical steroid use.

What are the signs of Topical Steroid addiction?
- Uncontrolable Eczema that spreads 
- Long term topical steroid usage for weeks, months or years 
- Topical steroids have stopped working or you need a stronger steroid to get the same result as the first one prescribed. 
- When you stop using topical steroids you skin experiences one or more of the following - Redness, itching, burning, skin hot to the touch, swelling and/or oozing. 
- After lots of tests your Doctors cannot uncover what is casing the problem. 

All of the above apply to Evie

What are the most common symptoms of Topical Steroid addiction?
These symptoms occur once you have stopped using the steroids. You may experience a few or all of these symptoms. Some may occur only a few days into withdrawal whereas others further into withdrawal.

- Red burning skin. This typically appears within a week after stopping topical steroids. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. It may take weeks for the red arm/white palm to appear as the redness spreads.

- Unbelievable extremely intense itching. Most experience the itch throughout the entire process, not just during flares. The itch feels like it originates under the skin and is difficult to sooth.

- Shedding or flaking skin. Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off.

- Edema. Swollen skin; swollen body parts containing fluid. Hands often swell during TSW.

- Oozing skin. Ooze may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried.

- Itchy skin. The itch is unbelievably intense and feels like it originates under the skin.

- Raw, painful skin. It may feel like a bad sunburn and may be sensitive to even the lightest touch.

- Eczema-like rashes spread from area of skin that was originally affected by eczema. You may experience hives, very dry skin, itchy skin, deep cracks, or tiny cuts in the skin even in areas where topical steroids were never used. The skin is one organ so when one area is medicated, it can affect all of your skin.

- Difficulty regulating body temperature. You may experience freezing hands, feet, or body and often get the chills.

- Exhaustion.

- Insomnia or difficulty maintaining a normal sleep schedule.

- Loss of appetite 

- Very, very dry skin that has the look and feel of plastic.

Evie has experienced all of these symptoms at some point over the past few months. Now we are two weeks into withdrawal and she is experiencing all of these again. In a way, as we know what to expect as we have been through this before its sort of easier to manage and deal with. Although still absolutely awful for evie to go through. This is why I am 100% sure Topical Steroid addiction is what Evie has been suffering with all this time.

Source of information from ITSAN Website

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