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