Friday, 5 June 2015

Comparison Photos

Hi again
I just wanted to pop on again and share some comparison photos.
(Amy is now 22 months steroid free!)
 The bottom photos are of Amy's hands today.

Amy's foot - the picture on the left was taken today

Amy's leg - left photo was taken today

As you can see healing does happen!

Wednesday, 3 June 2015

Starting to get back to "normal"

Hi again,
Once again I feel I should apologise for not updating sooner but life is busy and sometimes it's hard to find the time to sit and update.
Amy is now 22 months into her withdrawal.  I'm not sure I can quite believe that she has been going through all this for so long but at the same time it feels like a life time (if that makes any sense?).
Well we do have quite a bit to update on so here we go.
Since the last update when things were starting to look fab, Amy had a massive flare.  She had to stop going back to school whilst her skin healed and then she got hit with a horrible dose of the flu closely followed by an upset stomach.  It was very frustrating, especially when she had been doing so well.  After her sickness she had another mini flare but she bounced back quite quickly from that one and her skin started to look the clearer again.
Amy started back at school - again part time but building up her hours.
Amy's school books a circus to come every couple of years, as Amy came 3rd in her school talent contest she was asked to preform her solo "Amazing Grace" in front of the 600 audience and she bravely did so amazingly and I can't put into words just how proud of her I am!
Paediatric Appointment
Amy had her last paediatrician appointment last week and we got her updated blood test results.
Her vitamin D and iron levels have returned to a normal range and therefore she no longer needs to take supplements, the doctor advised she continue taking a normal daily dose but it was no longer required for her to do so to treat low levels.
Amy's eosinophil level which was a very high 47% has now dropped down to 20% (normal levels are around 5%).  Even though this is still very high, we are over the moon with the fact that they have come down so much. (Eosinophils become active when you have certain allergic diseases, infections, and other medical conditions and have been known to be high whilst going through topical steroid withdrawal).
The doctor was so happy with Amy's progress that he has now transferred her care back over to our GP and Amy no longer has to go back to the hospital.   We have been told that we still need to keep an eye on her and that if she seems to deteriorate in any way or if we become concerned we can get the GP to refer her straight back to the hospital.
So overall a fantastic appointment with a fantastic outcome :)
Back to School
I wanted to finish this update on another positive note.
Amy has just managed her first FULL day back at school.
This is a massive achievement and as most of you know you always focus on those achievements.
We know that Amy still does have some way to go before she is completely healed and we know that there are still going to be more ups and downs along the way, we don't know how long the rest of her healing will take, but we do know that she is getting better, there is light at the end of the tunnel and we DID make the right choice by stopping the steroids.  It isn't an easy journey and may not be the right choice for everyone but it was the right choice for Amy.
I hope you are all well and wish those of you going through your own TSW journeys a very speedy healing.
I will try and up date again soon

Tuesday, 17 March 2015

19 Months Steroid Free!


19 Months Steroid Free!

Hello again, I hope that this post finds you well.
 I am sorry that I have not been updating but life has been ticking along amazingly!
I am so glad to say that Amy has made some amazing improvements and her life is finally getting back to some kind of normality.
Although still dry and a bit blotchy, Amy's skin is by far the best it has been.  She has lovely clear areas and that dreaded itch has eased unbelievably, it is still there but on a lighter level.
Amy hasn't had any infections since December!
She has returned back to school, though this is still part time but we are building her hours up.  I really can't praise her school enough as they have been so supportive throughout everything.
Amy can now manage short baths and quick showers - for a child that was so scared to get into water as it was so painful this was a massive achievement for her.
Unfortunately, I don't have skin progress photos to share but I promise to add some soon, however
I have added below a few up to date photos of Amy as I thought it would be nice to share just how healthy my young lady is looking :)

Amy took part in her school talent contest singing solo "Amazing Grace"
I am so proud of her as this took quite a bit of courage for Amy to stand up in front of so many people when she is still at a stage where she doesn't like too much attention.
Amy came in 3rd place, we are all so proud of her and to see her standing up on that stage singing her little heart out was so amazing especially knowing everything that my little fighter has had to endure over the last (at the time) 18 months!
Here is the video of my brave young lady singing "Amazing Grace"
Will update again soon with some skin progress photos :)

Thursday, 17 July 2014

Heading Towards A Year Steroid Free!!

Life has continued to be busy and I'm pleased to say that Amy continues to make great progress.
Amy is now heading to her first year anniversary of being steroid free and she looks amazing!
Obviously she still is very up and down but now has lots more up's.

I know I haven't updated for a while and I apologise for that but we have had lots going on.
Amy has been going into school for about an hour a week but her main education still remains with her home schooling with her tutor from the education support team for medical absence (ESTMA).  We are aiming to slowly increase the time at school in September (after the summer holidays).

Amy is healing amazingly, her skin has lots of clear patches and although she still gets hit with the itchiness she now has big breaks between them and can enjoy time where she isn't ripping her skin to bits.  She can now get into a bath without screaming, though she can't stay in there for long periods and it still stings, she no longer finds it completely unbearable.  Clothes are still a bit of an issue, finding things that are comfortable is still quite difficult.  The summer heat is also being a little bit of a problem as it will make her have mini flares and she'll become quite uncomfortable so keeping her cool is a must at the moment.

I'm pleased to say that Amy hasn't suffered from any more skin infections for a while now and our recent appointment with the dermatologist proved fantastic with him being very impressed with the progress her skin has made and has even left us with an open appointment for the next 6 months with instructions to carry on as we are and return if Amy flares badly and requires further treatment.  But overall he was very pleased with how her skin was healing.  He has advised that Amy continues to take the vitamin D seeing as it has helped.

We have also returned to the paediatrician but nothing further to report there.  We ended up seeing a different doctor who knew nothing about Amy's medical history and we ended up repeating everything from our last appointment and came out with no further information.
Amy has got to stop taking the vitamin D for a couple of weeks to allow for further blood tests and then we have to return back to see them again at the end of September.  Obviously we will continue with the recommendation of the dermatologist in Amy taking the vitamin D after her blood tests.

I haven't taken any more skin progress photos recently but I will do some when Amy hits her year anniversary at the beginning of August and will update again then with them.

On the 6th July Amy and her sister Leanna took all our breaths away when they got to be flower girls at their uncles wedding.  Needless to say that both girls looked beautiful but we were all a little glossy eyed at seeing Amy look so well and actually be able to take part when only a few months ago we weren't sure if she'd be well enough.

Here is Amy, looking amazing.

And there is that cheeky smile!!!

11 months ago I wasn't 100% sure that we were doing the right thing by stopping the use of the topical steroids, I wanted to believe that the doctors wouldn't have prescribed something that would be so harmful to my little girl (or to anyone else).  But now I look into Amy's eyes and even though the past months were a living hell and she still has days that are hard to deal with and yes she still has a journey ahead of her till she is completely healed we know that it was the right choice for her and we know that even though she isn't at the end of this bumpy journey, there is light at the end of the tunnel and she will get there.

Thank you to everyone who has been and continues to follow our blog and Amy's journey.  I will update again soon with Amy's year anniversary progress photos.


Wednesday, 7 May 2014

A Big Step Forward

Last week Amy took a big step forward...

She went back to school!!
On Monday 28th April Amy went back to school for just under an hour, this is the first time she has been well enough to go in since around October.  It was such an emotional time as she was very worried about going back in but we were both reassured as Amy's home tutor went in with her so if there were any problems or if Amy felt unwell she would be able to come straight home.  She really enjoyed being back at school and went back on Tuesday again for an hour and Wednesday for half an hour, she had to come out due to getting very itchy and uncomfortable but we are all so proud of her.

Amy just before going back to school (still unable to wear uniform).

Wednesday night we were pleasantly surprised by yet another amazing breakthrough...
Amy slept through the night!!
I can't even remember the last time that has happened, even way before her TSW.
I'd like to say it was a turning point but as yet it she hasn't slept through again but it has given us hope of things to come.

We have taken some progress photos as Amy has now reached 9 months into her withdrawal from topical steroids.  (These were taken a week before her 9 month mark).

Here is a comparison photo, the top image is of Amy's arms at the start of her withdrawal and the bottom image is her arms nearly 9 months later.

Amy's feet and ankles are still very sore but have improved so much since she started taking her vitamin D supplement.  She still has a purple look to her feet but this is mainly due to her raynauds.

The top of Amy's legs, still a bit blotchy but no longer glowing red and we have clear patches in sight.

Amy's arm, although still very dry and a bit sore in places her skin has improved so much.

So far this week Amy has had a mini flare and hasn't been feeling very well, sadly she hasn't managed any more time at school.  Though this flare is rather annoying it is no way near as severe as her previous flares.  We know that there are lots of up and downs through topical steroid withdrawal but we also know that Amy is heading in the right direction and hopefully the worst is behind her.
Amy is looking forward to going back to school for a little bit again next week if she feels up to it and although she is still very itchy and uncomfortable and very aware that she still has a long road ahead of her, she continues to be my amazing, positive, brave and beautiful young lady who I couldn't be any more proud of.

Wishing those of you who are currently going through withdrawal a speedy healing.
Wishing those of you about to start, strength to make it through the bad times.
Wishing those of you just reading, good health
And continue to wish to raise awareness so that others don't have to suffer in the same way.
xx Lena & Amy xx
I will update again soon!

Saturday, 19 April 2014

Helping Amy Through Her Withdrawal - Treatments and Natural Remedies

Throughout my time of blogging about Amy's journey through her topical steroid withdrawal I don't think I have mentioned how we are currently treating her symptoms, so I thought I would do a post listing the things we are currently using to help Amy.
Please note I am not advising anyone to use these methods I am simply sharing what we are doing to help Amy.  We hope that maybe someone might find this information helpful.

Prescribed by the doctor/dermatologist

We have been prescribed many things to use on Amy but through personal choice after research some of the things we have not used.  Here is a list of the things we have been prescribed that we do use and find helpful.

Antihistamines - Amy uses these regularly to help with the intense itching, we find them to be very helpful and at the moment I don't think Amy would get through the day/night without them.  We do intend to ease off of these when Amy is further along in her withdrawal.

Emollients - Hydromol and QV Intensive, these have to be applied to Amy's skin throughout the day, out of all the creams/emollients we have used these 2 are by far the best.  They are very greasy, hydromol seems to stay greaser for longer whereas the QV seems to soak in quicker.  Amy's skin still becomes very tight and dry and these emollients help soften her skin and enable her to move around.

Dermasilk - Amy finally was prescribed these by her second dermatologist, she has the pyjamas, though she tends to wear the leggings part more then the top, she has been able to wear these under clothes at times but doesn't like wearing them to bed.  The socks have been fantastic as these are the ONLY socks that Amy can currently wear due to her sore feet and ankles, they really have been fantastic, the only down point is they have to be hand washed and dried flat.

Vitamin D supplement - Amy was prescribed this by her paediatrition after her blood tests revealed her levels where low.

QV Wash - We use this in the bath, Amy still finds the bath painful most of the time, however there are a few times she has been able to get in and enjoy it, these times are few and far between but seem to be happening more as time goes by.  The QV is gentle and doesn't seem to sting.  It also makes bubbles when squirted into the running water, lovely for Amy to be able to enjoy a bubble bath!

UVB light therapy, not really sure where to place this as it hasn't been prescribed but not sure it would be classed as a natural remedy.  We purchased a uvb lamp and have been using this now for a few months, I have noticed some great improvements in Amy's skin since we starred it.  We slowly increased her usage time to 2 and a half mins on each section once a day.  We are currently using it only once a week at the moment due to the nicer weather. 

Natural Remedies

Over the years of treating Amy's eczema we have tried a huge amount of natural remedies and creams with very little effect, I think when I look back it was probably due to her skin being addicted to the topical steroids.  We now use a variety of natural remedies to aid Amy through her tsw.  Some of these have been found through friends, others have been found through the website and some have just been through good old fashioned Google.
As mentioned before these are some things we have tried and I am mentioning them on our blog not as magic cures but to give some ideas on things that could be used if you wish to try them, they work for Amy but may not work for others.

In the bath
There are many natural things we have found that you can use in the bath ans here are some of the things we have tried and are still using.
Epsom and Dead Sea salts - we use a very small amount of these (individually rotated) in the bath as they can make Amy's skin sting.  I have noticed Amy's skin does seem to improve after having a bath with these in the water.  We do not use them every bathtime, maybe every other to every 3rd bath.
Apple Cider Vinegar - Many people going through tsw have said that they find this beneficial, we have tried it very diluted but Amy finds that it stings and she doesn't't like the smell very much either.  To be honest at the moment I wouldn't be able to say that I found it helped Amy as we haven't really been able to use it, we do intend to give it another try at some point when Amy's skin is maybe a little less sore.
Tea Tree Oil, I have used a dew drops of this in the bath when Amy's skin has looked a a bit yucky, it seems to help clear up some of the nasty and I would say has probably helped keep some of Amy's many infections at bay.
Bicarbonate Of Soda - This goes into every bath that Amy has, it helps ease itching and helps towards battling infection.

Inflatable Backwash
Seeing as Amy finds having a shower so painful and obviously we can't wash her hair in the bath we had to come up with a way to wash her hair.  We tried doing it over the edge of the bath but Amy found this very uncomfortable and it was hard not to get water and shampoo on her skin.  After looking around I finally found the answers.  I purchased an inflatable backwash.  It has been fantastic as we are now able to keep Amy's hair clean and fairly cream free.  Just by being able to wash her hair makes such a difference to Amy's sence of well-being, I know this Isn't really a treatment but has been a great aid in helping Amy Through her tsw.

Natural Balms
We have bought so many natural balms that have promised the magic cure for eczema and they have either not helped or made things worse.  A friend on Facebook who's son suffers from eczema started making her own balms.  We tried them on Amy and for a little while they did seem to help, this was just before Amy started withdrawal, however once Amy stopped using the steroids her skin became very sensitive to some things which she was able to use before and sadly this balm was one of the things she could no longer use.  Recently a parent on posted about how she had made her own balms for her child going through tsw so I thought maybe I could try making some of my own to try on Amy.
These are the first 2 balms I have made and currently use on Amy, I intend on making others at some point to.
The first is a chamomile balm, this is simply Shea butter mixed with a small amount of Grapeseed oil and a few drops of Chamomile.  This balm has helped a little bit to ease some of the intense itching that Amy experience, it by no means makes the itch go away altogether but it does seem to ease it a little.
The second balm is pretty much the same as the first but with a couple of drops of Lemongrass, I have used this on some of Amy's tucking looking bits and it does seems to take some of the redness out of them.  If you do try this one make sure not to add to much lemongrass oil as it will sting!
I am not promising that these are magic cures and they may not even be beneficial to others, they seem to help Amy but everyone is different.

I do intend on trying other oils, I'd like to make one to help her joint pain and another for her circulation.
If anyone has any tips on what oils would be good for these please let know as any information would be appreciated.  In the meantime I am going to try and research different oils and will add them here if they seem helpful.

It is hard to try and think of all the things we do to help treat Amy and to just generally keep her comfortable as now it kind of just comes naturally, but I will try to add anything else if and when I remember as these things maybe helpful to others.  I'm also interested in what others do/use to aid their withdrawal journey so please feel free to add these in your comments.

Tuesday, 15 April 2014

Paediatrician Appointment and Blood Test Results

I will start with once again apologising for not updating sooner but the nature of tsw keeps us on our toes and Amy has been unwell and recently had another flare.  Things are settling back down and she seems to be recovering from her latest flare quite quickly, though there are some signs of an infection trying to settle in which we are having to keep an eye on.  We're trying to get away with not having to go on another course of antibiotics.
I will start with the paediatrician appointment which we were very nervous about due to Amy's ever growing list of symptoms, to name but a few besides her skin:
A number of swollen lymph glands in her neck, armpit & groin
Severe joint pain

Weight loss
Feeling sick when eating and unable to eat even though hungry
Tummy pains
Unable to sleep well at night
Feeling tired all the time
Night sweats

The appointment was already nearly an hour late before we finally got called in to the doctors office and then we sat there for what seemed like ages whilst he went through Amy's notes and occasionally asked us a few question regarding family history.  He then went on to examine Amy and then went back to his notes.  After a while he told us he needed to talk to another consultant.  We sat and waited again for what felt like ages until he came back in.  He wasn't happy that results hadn't come through for the last lot of blood tests so he then had to chase those up.  Eventually he started talking to us about Amy....

He has said that although at this point he can't rule anything out completely her blood tests are quite reassuring as it doesn't seem to show anything sinister going on.  Her extremely high levels of eosinophils were probably due to her severe atopic dermatitis and that this maybe the reason for all the other elements that she is suffering from too.  She has put a little bit of weight back on since the GP did her weight so that was a good sign too.  He isn't sure about the problems she is having with eating but advised us to continue with the little and often and if this is still no better when we go back then it might be something that will require further investigation along with her severe joint pain that he said may be due to her skin condition.

He went on to explain some of the blood test results and she is showing allergies to cats, dogs, cows milk, house dust and also Food mix FX5 (we're not sure what that one is yet) plus there were a couple of other things too.  To be honest I am at the moment taking the allergy tests with a pinch of salt as I know that these can be inaccurate whilst going through topical steroid withdrawal and even the dermatologist said that they aren't always accurate.  Though we are keeping them in mind and trying to limit her exposure as much as we can.

The doctor has also given Amy a vitamin D supplement as her blood tests have showed her levels to be low - I'm rather annoyed with regards to this, not because they are low or that he has given her a supplement but because one of our GP's had phoned a week or so before hand telling me her levels were satisfactory and they clearly weren't!!

We have to go back at the end of June and so for the time being we're just plodding on the best we can.

Amy is currently doing quite well, she has her good days and her bad ones, the bad ones seem further appart now and it's nice to see her feeling a lot better.  Her skin continues to heal, even though she has suffered from a couple of flares and we're still trying to keep the infections at bay.  She is still suffering from all the above elements (plus a few others) but we're just trying to deal with them the best we can. Our next aim is for Amy to try and get back to school, though it will still be a while before she is up to going back full time.
We just take each day as it comes.

Amy continues to be as positive as she can, we've had the nights when she has cried telling me she can't do this anymore and that she hates her life, these words are so hard to hear because I just feel so useless at times when I can't make it better for her.  She always amazes me how she bounces back to her positive self and we know that she will get there in the end, one day her life will be "normal" and she will be able to do all the things that she wants to do.

Wishing everyone a very happy Easter and will update again soon