Wednesday, 5 March 2014

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!


  1. YOU ARE NOT ALONE!!!! My boy is 10 and we have been using steroid cream since he was baby. Mostly on his face. We stopped in January this year. His face is unrecognizable and we went through an awful appointment with the dermatologist. I can't tell you how many times we have been seen as 'neglectful' parents because the creams don't work. We realized the steroids were not working again and we do not want to go through the same hassles again switching steroid creams only to find they stop working after a few months. We are not going back to steroids. After realizing they might actually be causing the problem I don't think we will be going back to them ever again. I may even start my own blog. It would be awesome if his skin improves from giving up the creams. At the moment he is on the gaps diet, and surprisingly most of his food allergies have now gone, but his skin hasn't improved. This has led me to believe it is a reaction to the steroid creams. Maybe I could start a blog too and we could connect ours together? It would be a help to me, since we need as much support as we can get. Bless your beautiful daughter, our hearts are with you!

  2. Thank you so much for your comment, I strongly believe that Steroids have a lot to answer for. I know they have their uses but they're not the answer to all the problems and just wish that more doctors would recognise that. I think starting a blog would be a great idea, it would give you chance to reach out to others and help others too and yes of course it would be lovely to connect. I wish your son a very speedy healing. Lena (Amy's Mum) xx

    1. Hi Lena,

      We are doing the same thing for our daugther but we stopped using the steriods a year earlier than yourselves, so the affects are way less servere than poor Amys. Your blog keeps reminding me we are doing the right thing. We have seen two different demotologists now and both try to give us more steriods! Playing it cool as the welfare thing has crossed my mind, so
      really feel for you.

      Our daugther has had a blood allergy test and it has shown nothing. So we went to an alternative therapist and she had a sensitivity test, non invasive. She showed quite a few sensitivities to things like: wheat, cow products, citrus fruit, preservatives, sugar. We have eliminated some or theseand lowered others. Within the first week she lost 'the itch'. It is not the cure to the withdrawal but is certainly helping with the symptoms and I have heard other parents doing this for the withdrawal period and then reintroducing and they are fine.

      Amyway that's just our coping mechanism. We live in hope we will see her arms improve soon.

      Great to hear your blog. Wishing you all the best.


  3. Have them use some handwashing soap the next time Amy has to have blood drawn. That doesn't burn like those alcohol wipes do.

  4. I'm going to discuss other options with them Geanna because she is so worried about that wipe! but I wouldn't have though to ask about the handwash so thank you xx

  5. Hello again, I posted the anon comment, above. Blog all up and running and I think I connected with you on google+ From Louise :)

  6. Hello. Im mom of 14 yo girl who I just figured out has red skin syndrome. Im so relived that now I know why she is doing worse then ever. Worried so much that something more dangerous is going on... Im also a family medicine physician that is looking outside of the box 100%! Does anyone have lymph nodes swelling , that is one thing that concerned me with my daughter.. I guess if you are so inflamed lymph nodes will react.. She is so cold all the time and cant sleep. God bless all moms that are going thru this!