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.
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!
My very brave young lady!