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



Blood Test And A School Visit (just a little update)

Blood Test

The day of the blood test came all to fast for Amy, she wasn't looking forward to it and neither was I.

As always my brave young lady held it together for as long as possible but she did get very upset and has said that she won't be coming back for more!

I'm pleased to say this time we had a very caring and sympathetic lady who didn't wipe Amy's arm with the stupid alcohol wipe.

Blood test done and another week to wait for yet more results!

A Visit To The School

One of Amy's older brothers (Ian) had been away for the week on his year 6 school trip and was coming home on Friday.   We went to the school to collect Ian (plus Amy's younger sister Leanna and another one of her older brothers Toby).  Amy hasn't been to the school since before Christmas so it was so nice for her as she also got to see some of her friends and teachers.  It was so lovely for Amy to hear how much she had been missed and was also given a get well soon card, Amy has really missed her school friends and had started to think that she had been forgotten so to see her reaction at being told how much she was missed nearly brought tears to my eyes.

Amy even managed the small walk home (we only live 5 minutes from the school).  It was lovely to be out of the house as we've been pretty much stuck in other then quick family visits and appointments.  The sunshine was out and it was pretty warm, I really think the afternoon lifted her spirits and put an extra little twinkle to her smile.  Plus she was happy to have her brother back home!

It didn't take long after we got in for the effects of the day to hit Amy and she crashed out!

Monday

We are still waiting the results on the vitamin D blood test and should have the other blood test results on Friday and we're still waiting for her referral appointment too (yep we're sitting in limbo)

But ending this update on a good point...

We had a lovely weekend and Amy even managed a small trip to the park yesterday :)

Will update again soon xx

New Dermatologist And The Waiting Game

I'll start this update with Amy's new Dermatologist appointment.  Her appointment wasn't until 5.15pm so she was getting pretty tired before we even got to the hospital.  Luckily we didn't have to wait to long to see the dermatologist.  My guard was already up and was set to do yet another battle.  We sat down with the dermatologist who asked Amy a few questions.  So far I couldn't complain as he drew a diagram trying to explain eczema and its cycle to Amy.  No mention of steroids at this point!!  We explained to the dermatologist Amy's history with the topical steroids and all the side effects she had suffered, we showed him photos of Amy's skin looking red and burnt at the time of stopping the steroids.  He did say that he couldn't diagnose anything from a photo and that he would have had to seen her skin at the time.  He did say that he wanted to avoid steroid use at the moment but went on to say that we may have to consider trying them again at a later point (we won't be!!).  He wasn't very happy to find out that Amy had been left so long with out seeing a dermatologist (I explained about the first one we went to see back in December).  He couldn't believe that Amy had only just had any testing done and said that he wanted her to have some more tests done too.

I had already been contacted my the GP surgery to explain that some of Amy's levels were high but seeing as her vitamin D result wasn't back that it would be better to wait for them to come back in to discuss the results.

Once the dermatologist found out that Amy had recently had a blood test done he pulled up the results onto his computer and lets just say the look on his face was more then a little concerning, he told us that Amy's Eosinophil levels were extremely high and questioned a little bit about our family medical history I asked in which area as we have a large family with various different elements and listed a few but he then abruptly stopped himself and said we'd wait for more test results first....we were completely confused, had I said something worrying or not mentioned the right thing?? I tried to question what he was suspecting but he sort of talked round the answer and steered away from my questions.

Amy's Eosinophil levels were 47% - normal levels are between 0-5%

We were given another type of emollient to use with instructions to apply them along with the ones we are already using and to aim to moisturise Amy's skin every 2 hours.  He also advised that Amy should have a bath 1-2 times a day (that should be interesting).  We were given an appointment to go back and see him in 4 months (the test results will be sent through to the GP surgery) and we walked out with no steroids and no battle regarding them.

He did however prescribe protopic 0.1%
It very clearly states on the leaflet within the box that
"PROTOPIC 0.1% IS NOT APPROVED FOR CHILDREN YOUNGER THAN THE AGE OF 16 YEARS OF AGE. THEREFORE IT SHOULD NOT BE USED IN THIS AGE GROUP"
and
"THE EFFECT OF TREATMENT WITH PROTOPIC ON DEVELOPING IMMUNE SYSYTEM IN CHILDREN, ESPECIALLY THE YOUNG, HAS NOT BEEN ESTABLISHED."

I have no idea why the doctor would prescribe something that clearly Isn't suitable for Amy's age.  He didn't discuss any of the risks of this cream and nor did he instruct us on how to apply it.  Having already researched the risks we are able to make the dession that we wouldn't put something that is high risk and really actually worse then steroids on Amy's skin, but how many other people are being prescribed the wrong strengths and not given the risks??
I am not telling anyone not to use what you have been prescribed, those choices are yours alone, but PLEASE always research before you use any form of medication and educate yourself of the risks/benefits, it may just save yourself/your child suffering like so many others have and still are.

Once we got home we did the worse thing you can do.....we Googled!!
Some of the results we found regarding the eosinophils levels were not only worrying but scary and upsetting.

The following day I decided to contact the doctors and find out if we needed to come back in to discuss the results of the first tests but was told that due to the results the GP had already refereed Amy to a Specialist Paediatrician and I would have to wait for the hospital appointment to come through...left even more confused and now very worried I'm sat here waiting for the appointment to come.  Though I'm sure if it were something very serious they wouldn't be making us wait, so trying to remain positive.

My head is all over the place, I'm not sure if these results are due to Amy's withdrawal or something different altogether but will update again when I find out.

Amy has an appointment on Friday (8th March) for her next lot of blood tests and we are still waiting for the outcome on her vitamin D test.

Coming back to Amy's skin I have at last taken some recent photos, her skin is still recovering a little from her last infection but here is Amy's skin update pictures.

214 days Steroid Free!!

My beautiful young lady

Amy's skin is still very dry but she no longer has the swelling and redness like before.
(the photos make them look a little redder then they actually are)

Amy's feet and legs have been a real problem area

(Amy's feet turn purple due to her suffering from raynauds)

clearer patches of skin (though still a few marks from her latest infection)

Tummy clearing up lovely

 We have now bought a UVB lamp and have been doing some light therapy at home and I do feel that it is helping.

To save you scrolling down to find Amy's earlier photos here are a couple of comparison photos

As you can see Amy no longer has the thick red burnt looking skin! 

Lots Going On

I know I haven't updated in a while but we have had lots going on and I will try and update as much as I can now.

Amy has had lots of staph infections and has been on and off lots of antibiotics so she has been feeling very up and down.  We seem to be able to clear them up only for them to come back again.

The way our doctors surgery works is that you tend to see whatever GP is available so Amy has pretty much bounced around from one doctor to another.  On one of our visits to deal with yet another infection we finally got to see a doctor who agreed that Amy should not be using Steroids and that they can in fact make more problems for the patient.  He even put on Amy's medical notes that "STEROIDS SHOULD BE AVOIDED".  He was very thorough, didn't rush us out of the door and couldn't have been more helpful.

As I have mentioned several times, the school have been fantastic, however Amy's education was becoming quite a concern.  With the help from our good doctor who put it in writing that Amy is not well enough to attend school, the school went on to contact the Education Support Team For Medical Absence and I am so pleased to say that Amy has been allocated 6hrs of home tutoring a week, starting with just an hour a day for 3 days per week and to increase to 2hrs.  The tutor is great and very understanding and Amy loves to be able to get into her school work again (I'm clearly not the same as a teacher!)

The Good Bits

Amy's skin is starting to look great, she doesn't seem to be shedding as much, she's definitely no way near as red and she has some lovely healthy skin in places.

The Not So Good Bits

Amy is still finding the intense itching hard to deal with, she's not sleeping well, she continues to lose weight, her joints still ache, she's tired all the time, she still finds having a bath quite painful, she's very sensitive to the cold and she has now been diagnosed with Raynauds Syndrome (hence her purple feet).

Upsetting a Dermatologist

It would seem that our last dermatologist didn't like the fact that we did not take Amy back to see him, nor the fact that I have asked for a second opinion.  He has recently been in touch with not only myself but also one of the GP at our surgery stating his concerns for Amy's welfare!!!!

The GP asked for us to come in and see her so that she could review Amy.  I wasn't really looking forward to the appointment as I knew it was going to be yet another battle.  Basically the dermatologist contacted her and told her that Amy needed to be put back on topical steroids and that he was extremely concerned for Amy's health and welfare.  I told the GP that all the Dermatologist wanted to do was put Amy back on the topical steroids, he didn't care about any of the side effects that they had caused and that I would NOT be using them on Amy again.  I knew our appointment with Amy's new dermatologist was just around the corner so said that I would wait and see what the new Dermatologist had to say.  The GP decided to send Amy for some blood tests and I asked for Amy to also have a Vitamin D blood test at the same time.  This is the first ever blood test (or any test for that matter) that Amy has had, even though throughout the years I have asked for her to be tested.

Blood Tests

Amy was so brave when she went for her blood tests, having never had one she was very nervous.  We used the magic cream, which I was happy didn't sting or burn and we had an appointment so that she didn't have to wait a turn.  We got to the pathology department and sat waiting with lots of adults.  The pathology department works on a first come first serve basis but we were told that this wouldn't be the case for Amy as she was a child and had an appointment........nearly half an hour later of waiting and a very scared little girl, my husband went to ask what was going on, turns out that they'd put Amy to the bottom of the list........a few words later and Amy was seen next.  You'd think at this point it would have been the needle that was the problem....nope it was that stupid alcoholic wipe that he wiped non to gently over Amy's very sore and sensitive skin, poor Amy nearly hit the roof.

Blood test done we just had to wait for the results and also the appointment with Amy's new dermatologist.

My very brave young lady!

Birthday Girl

The 4th February was Amy's birthday and my brave young lady turned 8!

I wish I could say she had the best birthday but unfortunately most of the day was spent with her feeling pretty unwell, though she did have some enjoyable breaks through the day and was able to make the most of them.

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.