Wednesday, 3 June 2015

Starting to get back to "normal"

 
 
Hi again,
Once again I feel I should apologise for not updating sooner but life is busy and sometimes it's hard to find the time to sit and update.
 
 
Amy is now 22 months into her withdrawal.  I'm not sure I can quite believe that she has been going through all this for so long but at the same time it feels like a life time (if that makes any sense?).
 
 
Well we do have quite a bit to update on so here we go.
 
Since the last update when things were starting to look fab, Amy had a massive flare.  She had to stop going back to school whilst her skin healed and then she got hit with a horrible dose of the flu closely followed by an upset stomach.  It was very frustrating, especially when she had been doing so well.  After her sickness she had another mini flare but she bounced back quite quickly from that one and her skin started to look the clearer again.
 
Amy started back at school - again part time but building up her hours.
Amy's school books a circus to come every couple of years, as Amy came 3rd in her school talent contest she was asked to preform her solo "Amazing Grace" in front of the 600 audience and she bravely did so amazingly and I can't put into words just how proud of her I am!
 
 
 
 
Paediatric Appointment
 
Amy had her last paediatrician appointment last week and we got her updated blood test results.
Her vitamin D and iron levels have returned to a normal range and therefore she no longer needs to take supplements, the doctor advised she continue taking a normal daily dose but it was no longer required for her to do so to treat low levels.
Amy's eosinophil level which was a very high 47% has now dropped down to 20% (normal levels are around 5%).  Even though this is still very high, we are over the moon with the fact that they have come down so much. (Eosinophils become active when you have certain allergic diseases, infections, and other medical conditions and have been known to be high whilst going through topical steroid withdrawal).
The doctor was so happy with Amy's progress that he has now transferred her care back over to our GP and Amy no longer has to go back to the hospital.   We have been told that we still need to keep an eye on her and that if she seems to deteriorate in any way or if we become concerned we can get the GP to refer her straight back to the hospital.
 
So overall a fantastic appointment with a fantastic outcome :)
 
 
Back to School
 
I wanted to finish this update on another positive note.
Amy has just managed her first FULL day back at school.
This is a massive achievement and as most of you know you always focus on those achievements.
We know that Amy still does have some way to go before she is completely healed and we know that there are still going to be more ups and downs along the way, we don't know how long the rest of her healing will take, but we do know that she is getting better, there is light at the end of the tunnel and we DID make the right choice by stopping the steroids.  It isn't an easy journey and may not be the right choice for everyone but it was the right choice for Amy.
 
I hope you are all well and wish those of you going through your own TSW journeys a very speedy healing.
 
I will try and up date again soon
 
-x-
 
 
 


1 comment:

  1. hello the parents of amy, I have just received the blood test too. my Eosinophils level is very high too. but my dr did not explained much to me. wanna know how long will it take to get lower. any special thing I can do to lower it down? did amy's dr explained why it increased during tsw. many thanks

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