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 Itsan.org 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 itsan.org 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.

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
xxx