A Little Bit Sore

We really wanted to show some updated photos of Amy's healing, however over the last couple of days Amy has come out in spots!
These are due to a slight infection that has needed to be treated with a antibiotic cream which has been a little bit tricky to apply as Amy finds that it stings.
She has also been feeling under the weather and extra itchy but is feeling lots better today.
The spots are now improving and we will take some up to date photos once they have cleared up a little bit more.

For our own reference we did take a photo of Amy's foot & ankle as these continue to be her problem areas.  We can't wait for these areas to start getting better.

I am also looking into getting a UVB lamp to start some light therapy at home.

I will keep you posted on if and when we start using it.

Amy Has A Bath!!

My little girl never ceases to amaze me!

On the 30th December Amy had a doctors appointment booked for the late afternoon.

She was due to have a shower, which is something both Amy and I dread.

Amy because she finds this painful and has become very scared of the water and me because I hate putting her through it as I know it causes her so much discomfort.

Before Amy has a shower I always ask if she'd like to try a bath, last time we tried was ages ago and she got in only to jump straight back out to the intense pain the water caused.  Her last proper bath was probably nearly 5 months ago!

Amy surprised me this time when she said that she would like to try a bath again.

We ran the bath with warm water, not to high and Amy got in.

At first she complained of it stinging her feet but slowly the stinging eased, she was so brave to give it a try and to give the water a chance to sooth.

Slowly she lowered herself further into the bath, each time having to work through the initial stinging sensation.

Eventually Amy was fully in the bath, laying down and giggling.

Her itching stopped for a short time and the water soothed her.

Unfortunately it didn't last and the dreaded tingling started in her feet and she needed to get back out.

After gently drying and moisturising her she was bouncing and dancing around the house singing "I feel so much better".  I really could have cried at that point.  She was even looking forward to her next bath.

I'm so proud of Amy, she continues to be so brave and positive.

Later that day we went to her doctors appointment.

I explained that I wasn't happy with how we had been treated by the dermatologist and the GP was great.  She has given us another urgent referral to see another dermatologist.  We have to wait for the appointment to come through and to be honest I'm not going to hold my breath that will get very far with this one but I'll keep my fingers crossed.

Due to a lump in Amy's neck that has been there for the last few months the GP wants Amy to have an ultrasound scan.  I don't think this is anything to worry about but it's still there nagging at my brain, just another thing to add to our list of concerns.

Christmas

Christmas is always a fun time in our house.

This year we may have done a few things different but we had a wonderful family day.

We were up nice and early like every Christmas with 6 very excited children

Although Amy wasn't jumping up and down like the others as she couldn't get out of bed until she had been creamed.

Her siblings all waited patiently for me to cream Amy, loosening her dry tight skin so that she could get out of bed.

(This an every day routine as Amy's skin becomes extremely dry and tight through the night, she is unable to move out of her bed until she has been creamed all over, head to toe.)

Then our Christmas day started with lots of squealing, giggling and general happiness.

Our day was lovely and pretty much problem free.

Amy did get itchy from time to time but as a whole she had a fab day.

Unfortunately Santa didn't manage to deliver her magic cream but she did get some special presents.

December Fun

I had a meeting with the school to discuss Amy.

I can't praise the school enough with how supportive they have been.

Amy has had to have so much time off I was expecting to have a battle but how wrong I was.

It would have been lovely for Amy to have made it back to school for all the fun things December has to offer, from Christmas plays, Christmas parties and Christmas dinner but sadly this wasn't meant to be.

Although Amy missed out on these things we tried to recreate them as best we could

We had our own little Christmas dinner and party playing games and Amy won most of them.

The biggest thing that Amy was sad to miss was her school Christingle. It should have been Amy with her class friends holding the candles, an event that all the year 3 children look forward to, however Amy wouldn't be able to take part.

I went along to the school to watch, 2 of Amy's brothers were also in the Christingle.

Amy's Nana came and sat with her and did some fun activities whilst I was gone.

It was a beautiful service and as always my boys made me very proud, but it was also very emotional.  I found it very hard to hold back the tears when Amy's class came in holding their candles, knowing that she should have been doing this too.

Amy's Christingle

We always try and make sure that Amy takes part at home in whatever she is missing out on at school...in one form or another.

The school provided Amy with everything she needed to make her own Christingle candle at home and Amy was able to share this on her class blog on the last day of term.

Later that evening Amy lit her candle as her 4 big brothers and younger sister sang the Christingle song and we all watched her with her biggest smile.
Ready to look forward to Christmas.

Dermatology Appointment

Firstly I'd like to say

Happy New Year!!

Sorry we haven't updated in a while but things have been pretty busy, so over the next couple of days I will do some catch up posts, starting with this one.

Amy's Dermatology Appointment was on the 12th December and to be honest I was very nervous about going.  We got ready to go, which itself was not much fun as Amy is still unable to wear underwear and wrapping up is pretty hard too as she can't tolerate wearing layers of clothes.  So we bundled her up with blankets in the car to keep her warm and head off to the hospital.

We didn't have to wait long to be seen and we sat discussing Amy's skin history and all the various creams we had used.  I explained to the doctor that we weren't happy with using Topical Steroid creams any more due her displaying a lot of side effects from them:

Red burnt looking skin.

Random bleeding from her legs - she didn't even have to touch them they would just start to bleed.

The thinning of her skin on her legs

The intense painful burning sensation she would experience every time we applied it

Her bedding being covered in blood every morning.

and the fact that the cream didn't seem to be helping just making it worse.

I explained to him how I had found out about and researched red skin syndrome, addiction to topical steroids and steroid induced eczema.  I explained about ITSAN and reading so many stories about those suffering in similar ways to Amy.  He told me that this was unfounded and set up by a group of steroid haters.  He implied that I was making Amy suffer for no real reason and that her skin was this bad due to not applying the cream properly.  He kept telling us that Amy needed to use steroid creams to make her better.  He didn't want to acknowledge our concerns that these creams could be in fact making her worse, even after showing him pictures of what Amy's skin was like when we stopped using them and the improvement (though small) since we'd stopped, nor the fact that the side effects had stopped too.

We were given another option which was to use an immunosuppressent cream as an alternative to the Topical Steroids.  I questioned this as I have heard that these creams can be quite dangerous and he then told me that there is a small risk of it causing SKIN CANCER.....why would I ever agree to using that on my daughter???  I very politely told him NO though at this point being polite was getting pretty hard.

The doctor continued to try and talk us into using the topical steroid cream, he said that Amy could have these lovely silk garments and light treatments BUT only if we agreed to using the topical steroid cream first.

  We came out feeling very confused and upset. I didn't know if what I was doing was right, I felt like maybe I was making Amy suffer for no reason, all I want to do is make my little girl better.  He gave us a prescription for a very potent topical steroid cream to use and to make another appointment after Christmas.

After we got home I ran through everything in my head.  Amy was determined that we were not going to be using the cream on her, she reminded me how the steroid creams hadn't helped her and how far she'd already come...yep she is only 7 (nearly 8!)  I thought back to all those side effects she had suffered because of those creams and how much her skin was improving without using them.  Then I became cross!! How dare he not listen to us and to try to bribe us with these other treatments which Amy should be able to have without using the Topical Steroids.

Needless to say we have not used the creams prescribed by the dermatologist and nor will we be going back to see that doctor again.

I contacted my doctors surgery and made an appointment to see a GP after Christmas to discuss everything.