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