It's Amazing The Difference A Few Days Can Make

We have had a few great days!!
Everyday is a step nearer to healthy skin!

It's amazing how different Amy has been over the last few days.

Her skin, though still very red and sore isn't quite as red or quite as sore.

Amy has had a big smile on her face - she really does brighten the room with her smile!

Amy has even been able to get up and play with her 4 brothers and sister and their giggles fill up the house.

Amy has also made a friend, a little girl named Eden who like Amy is going through a topical steroid withdrawal, Eden is a bit further along then Amy but it is so nice for Amy to be in touch with another child near her age who knows just what she is going through.  After reading Eden's blog Amy was amazed at just how similar there skins looked. Eden's story has brought her hope and we can't thank Eden (and her mum) enough for that.

Here is Eden's story
http://edenskin.blogspot.com/

It was seeing Eden's blog that really made me think of making one for Amy's story, in hope that just maybe Amy's journey might make the difference to someone out there to.

Amy hasn't wanted to have her photo taken for a while, however today she has let me take some for her blog and also so Eden can see her to :)

plus so we can have something to look back on and see how far she has come.

Unfortunately I don't have photos of Amy at the start of her journey to compare to now but this is Amy - 3 months into her topical steroid withdrawal.

Amy's face isn't quite as red and blotchy as it has been but her eyes are still quite puffy

 

Amy's legs are slowly getting better!

Amy's feet are now quite itchy and her ankles are still very sore.

Amy's wrists and hands are still very sore.

Amy normally keeps her arms covered up as she doesn't like people to see them but has been brave enough to let me share them on her blog.

Daddy was trying to make her smile when Mummy was taking the photos.

Yep it worked!!

Amy's beautiful smile that melts my heart and brightens my day!

I love you Amy and I am so very proud of how brave and strong you are xxx

3 Months Of Topical Steroid Withdrawal

Amy is now 3 months into her withdrawal.

Last week she managed 4 days of school, though this was hard going for her and by Friday she couldn't manage another day but I'm so proud of her for giving it her all.

Amy's "Urgent" hospital dermatologist appointment came through for 12th December - hmmm maybe not so urgent after all!!

We went to the doctors on Friday as Amy's chest infection hadn't cleared up plus none of her new creams had been put on repeat so we needed to go in and sort that out too.  We had the joy of seeing yet another doctor who really couldn't understand why we weren't using the steroid cream and didn't want to listen to anything about the topical steroid withdrawal.

We sorted out her creams and was given some more antibiotics for Amy's chest infection plus the doctor gave us some other cream to use on Amy's sore wrists, she told me it wasn't a steroid and to go home and use it twice a day.  I don't know why but my alarm bells in my head started to ring LOUD!

I thought I better research this cream before putting it on Amy, something I will do for all creams we use in the future on all of my children.

The cream is called Elidel Pimercrolimus I wasn't sure about what I was reading so I asked on the ITSAN forum for advice and was given links to other people who had used it.  This isn't a topical steroid cream however it is an  immunsuppressant and also very addictive for the skin, very similar to topical steroids - not something I will be using on Amy!!! 

I'd like to point out that no I am not a doctor and I'm not telling anyone not to use medication that the doctor has given, however I would advise that you research everything before you use/take it.

Doctors don't always know the side effects that the things they give you can cause! 

The First Couple Of Months Into Topical Steroid Withdrawal

I wish now that I had taken photos of Amy in the first couple of months of her withdrawal so that we had something to look back and compare with, however the last couple of months has been a nightmare and photos were pretty much the last thing on our mind.

 

True to what we read, Amy started going through the withdrawal and her skin had a massive flare.  Areas that were once fairly clear became itchy and sore, her skin became so red and tender and itchy beyond words.

She could hardly move and spent days, weeks on the sofa under covers as her body could not control its temperature and she felt cold all the time.

Amy went back to school after the summer holidays, but due to the flare she only managed the first week.  Her immune system seemed to take a hit too and she ended up with a chest infection.

We took Amy to the doctors, we opted to see a different doctor to the one who kept giving us the steroids, but this one also wanted to not only give Amy stronger steroids but also oral ones too.  I did want to tell her where to put her steroids but figured it might be a bit rude!! So I gave her a simple answer of NO Thanks!

I explained all I had found out about Red Skin Syndrome and Topical Steroid Addiction/Withdrawal.  To my amazement she said that she had heard of it however had never seen it.  She was then very helpful in giving Amy lots of different emollients to try and different antihistamine to help through the day (she already has some for night time).  Amy was given antibiotics for her chest infection and we also walked away with an urgent hospital dermatologist referral, though at this point I'm not really sure what good it will do.

Unfortunately most doctors in the UK do not acknowledge Topical Steroid Addiction and are far to quick to throw steroids at everything!

Amy spent the next few weeks again on the sofa.

We cried lots and I was so tempted at times to go back to the steroid creams, but Amy kept strong telling me how far she had come and how she didn't want to use them ever again.

It's an amazing feeling when your 7yr old who is going though such a horrible time is stronger in spirit then you are!

Amy managed the odd days here and there to go into school, we are very lucky to have such an understanding and supportive school.  Amy was always tired, itchy, sore and just to uncomfortable to go in.

To top it off Amy is now in year 3 and was due to start swimming with the school this year, just another thing that her skin has stopped her joining in with.

The itching itself is uncontrollable and she cries that she wishes she could stop scratching.

Her appetite has dropped.

She can't tolerate having a bath and showers are a living hell - I'm sure my neighbours must think I'm killing her, these are now limited to only when she really has to have one.
Amy's skin sheds lots!

Nights are hard as the itching seems to increase making it hard for her to sleep.

In the mornings she is stiff and sore and it takes ages to cream her enough so that she can move.

I can't put into words just how hard it is to see your child going through such a painful time, as a parent all you want to do is make it better and its very hard when you can't.

To top it off is the guilt, the guilt of knowing I put those creams on her in the first place.  Everyone keeps telling me I was doing what the doctors said was right and yes at the time I thought I was doing what was right for Amy, but that doesn't take the guilt away!

Amy's Story

Since around the age of 2 Amy has had eczema, though quite mild to start with we were prescribed topical steroids to treat it.

On and off for the next 3 years we managed Amy's eczema with the use of moisturisers and mild steroid creams.  By the time Amy reached the age of 5 her eczema had taken over her arms and legs so we went back to the doctors who gave us yet more steroids with instructions to use them for as long as it took to clear up the eczema, she told us that the steroid was quite mild so not to worry as it really wouldn't harm Amy and that we really couldn't put to much on her.  We took her for her word and yep for a while the eczema did start to clear but it would always come back a little worse when we stopped using the cream even though Amy was always being moisturised.

We carried on for the next 2 years using the steroid cream on and off (more on then off) thinking we were helping and doing the right thing.  The cream was put on repeat and we were told we could up the steroid % if we needed to, I'm so glad that my gut instinct told me not to.

The doctor would not refer Amy for any tests and told us it was a genetic form of eczema that Amy might have to deal with all her life and therefore any testing would be pointless.

By the time Amy hit 7 most of her little body was covered in eczema, she cried all the time and wished to just be "normal".

It's heartbreaking to hear your little girls ask if Santa could bring her magic cream to make her skin better and not want toys or anything else! 

We tried changing Amy's diet - it didn't help.

Spent lots of money on trying all new natural creams that promised to help - most of the creams would sting and again we were back to square one.

I spent hours searching the internet trying to find something, anything that might help her and one thing kept coming up - RED SKIN SYNDROME!

At first I didn't think this could have anything to do with Amy but then I started looking more and more into it.  I read through lots of stories and blogs about others going through topical steroid withdrawal and looked through all the different photos.  I couldn't believe how many of these stories had so many similarities to Amy's.

I spent the next few weeks researching red skin syndrome and topical steroid addiction/withdrawal.  I was so happy to come across the ITSAN.org website and forum.

I showed Amy all the photos and talked to her about maybe trying to stop using the steroid creams.  I had to explain to her that this was going to be a long, painful, itchy journey and that I didn't know how long it might take for her to get better.

Amy was happy to go down this road with the hope of one day having healed skin and a normal life.  Her words were "The steroid creams aren't making me better anyway"

So Amy's Topical Steroid Withdrawal began on the 4th August 2013

Amy before starting her withdrawal and a rare sight of uncovered arms!