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.