Wednesday, 5 March 2014

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

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! 


  1. If she has an infection it could be due to her fighting that off. Keep your hopes up, we are right behind you xxx

  2. Keep Up be strong and wish the best for today's appointment. We are all with you

  3. I found your blog through itsan and just wanted to comment that we are going through the same horrible withdrawal with our 3 year old, son. We just finished month 5. I read your earlier posts and just cried because I feel so helpless as well. A mom's job is to take care of their kids and you just can't do anything to make this go faster or easier for them. I like that you included your positive points as I try to do that each month as well or it just gets too hard. Itsan has been a great place to see that we are not alone in this struggle. Your daughter is amazing and brave to fight this! I look forward to following your story to see her fully healed. -Julie, mom of Owen

  4. Hi Julie, thank you for your comment, I hope that Owen is doing ok. I think it is always important to focus on the positive otherwise this journey would become unbearable, as you know yourself it is heart breaking to see your child go through this and the only way forward is to know that one day they will be healed and their journey was worthwhile in the end, it's just a shame they have to go through it in the first place when it could have been avoided. Xxx