Tuesday, 15 April 2014

Paediatrician Appointment and Blood Test Results

I will start with once again apologising for not updating sooner but the nature of tsw keeps us on our toes and Amy has been unwell and recently had another flare.  Things are settling back down and she seems to be recovering from her latest flare quite quickly, though there are some signs of an infection trying to settle in which we are having to keep an eye on.  We're trying to get away with not having to go on another course of antibiotics.
I will start with the paediatrician appointment which we were very nervous about due to Amy's ever growing list of symptoms, to name but a few besides her skin:
A number of swollen lymph glands in her neck, armpit & groin
Severe joint pain

Weight loss
Feeling sick when eating and unable to eat even though hungry
Tummy pains
Unable to sleep well at night
Feeling tired all the time
Night sweats

The appointment was already nearly an hour late before we finally got called in to the doctors office and then we sat there for what seemed like ages whilst he went through Amy's notes and occasionally asked us a few question regarding family history.  He then went on to examine Amy and then went back to his notes.  After a while he told us he needed to talk to another consultant.  We sat and waited again for what felt like ages until he came back in.  He wasn't happy that results hadn't come through for the last lot of blood tests so he then had to chase those up.  Eventually he started talking to us about Amy....

He has said that although at this point he can't rule anything out completely her blood tests are quite reassuring as it doesn't seem to show anything sinister going on.  Her extremely high levels of eosinophils were probably due to her severe atopic dermatitis and that this maybe the reason for all the other elements that she is suffering from too.  She has put a little bit of weight back on since the GP did her weight so that was a good sign too.  He isn't sure about the problems she is having with eating but advised us to continue with the little and often and if this is still no better when we go back then it might be something that will require further investigation along with her severe joint pain that he said may be due to her skin condition.

He went on to explain some of the blood test results and she is showing allergies to cats, dogs, cows milk, house dust and also Food mix FX5 (we're not sure what that one is yet) plus there were a couple of other things too.  To be honest I am at the moment taking the allergy tests with a pinch of salt as I know that these can be inaccurate whilst going through topical steroid withdrawal and even the dermatologist said that they aren't always accurate.  Though we are keeping them in mind and trying to limit her exposure as much as we can.

The doctor has also given Amy a vitamin D supplement as her blood tests have showed her levels to be low - I'm rather annoyed with regards to this, not because they are low or that he has given her a supplement but because one of our GP's had phoned a week or so before hand telling me her levels were satisfactory and they clearly weren't!!

We have to go back at the end of June and so for the time being we're just plodding on the best we can.

Amy is currently doing quite well, she has her good days and her bad ones, the bad ones seem further appart now and it's nice to see her feeling a lot better.  Her skin continues to heal, even though she has suffered from a couple of flares and we're still trying to keep the infections at bay.  She is still suffering from all the above elements (plus a few others) but we're just trying to deal with them the best we can. Our next aim is for Amy to try and get back to school, though it will still be a while before she is up to going back full time.
We just take each day as it comes.

Amy continues to be as positive as she can, we've had the nights when she has cried telling me she can't do this anymore and that she hates her life, these words are so hard to hear because I just feel so useless at times when I can't make it better for her.  She always amazes me how she bounces back to her positive self and we know that she will get there in the end, one day her life will be "normal" and she will be able to do all the things that she wants to do.

Wishing everyone a very happy Easter and will update again soon


  1. Poor Amy, she is a tough cookie! I hope she starts to feel better again soon, maybe its just a bump in the road, let's hope so and I hope things start to look for her once again. Louise x

    1. Hi Louise, thanks for your comment xx we've just got back from the doctors with more antibiotics :/ oh well at least they will clear up the latest infection. How's things with you? Lena xxx

  2. Josh has had a couple of nights where he's only woken up once or twice which has given us a bit of a break, skin looks bad but he seems better in himself. Sigh... Its a long road, hope you're holding up ok x Louise