Saturday, May 14, 2011

More Grrrr

Sorry, this post is going to be more whinging.

I am hoping that if I get it out of my system, I can get on and enjoy the weekend.

My 1st Grrrr is that yesterday the preschool freaked out and thought Ashlea was looking unwell.  Because I wasn't there to see how she looked, I took their word for it and arranged an emergency after school trip to the hospital for bloods and a quick once over.  Their verdict (and mine) - she's fine.  I don't mind that the preschool were worried and called me - I like that they supervise her closely and know what is and isn't nornal behavior for her - the Grrrr is that we ended up having an unnecessary hospital trip and blood test. 

The 2nd Grrr is that Ashlea's creatinine was actually slightly improved yesterday (363 down from 378).  I am not upset that Ashlea's creatinine is down, I am frustrated because I think I know why it is down.  Late last year Ashlea's dietitian decided Ashlea needed more protein in her diet.  I was worried that this would increase her creatinine, but I stupidly listened to the dietitian.  What happened?  Her creatinine has gone from 210 to 360 - and now that I have cut out the protein it has stabilised again.  I am frustrated beyond belief to think that this huge jump in creatinine could have been prevented by not following the dietitians adivce. 

The 3rd Grrr is that we got inconclusive results back from the girl's coeliac studies.  They all have the genetic typing that makes them susceptible to coeliac but they don't currently have antibodies in their system to say they are reacting to gluten.  While I am glad it seems that they are in the clear at the moment I am not sure if this means they are still at risk for developing it in the future.  I know some people will say you either have it or you don't, but surely with most things that are genetic there is a combination of genes and environment that come into play.  Does that mean that something in the environment could still trigger it?  Should we get Emma biopsied even though her antibody levels were low?  Can you imagine trying to get Emma to co-operate for something like that???

The 4th Grrr is blogger.  What is going on????  Sorry if any of your comments have been lost over the last couple of days - blogger has lost the plot. 

 Aahhh, that feels better.  Thanks for listening.



Sarah said...

Awesome that the preschool were on top of it all. So glad to hear Ashlea is okay though. So frustrating that the Dietician gave you the wrong advice for Ashlea.

Not sure what advice to give you about Coeliac, hope some others may be able to.

Yes my blogger has been annoying me too! Lost your comment on my blog :(

Missy said...

I guess it is a hard balance between them not calling when they should and calling when they shouldnt. On the upside, happy to hear that it is all good.

Grr about the dietician and the protein increase in the diet and the subsequent increase in her creatinine. I think you are Ashlea's best "doctor" Alison, follow your instincts.

Blogger has been a pain...I lost lots in my post and the link to it and had to redo it..grrr.

E. said...

I'm Coeliac and was diagnosed almost 16 years ago. I was told you can be susceptible to Coeliac disease but it isn't always triggered. It can be triggered by a any number of things including pregnancy.

I have heard of people being diagnosed in their 70's.

The biopsy is done under twilight sedation for adults and I have never remembered a thing but I think they use a GA for kids. You can also have false negatives on the blood test so you would need to keep that in mind.

While I am a Coeliac only Boy Child has had the blood test and that was due to him often having stomach pain. He was apparently okay. But if thte stomach pain had conitnued I would have had other tests done.

I hope this helps.

Rosalie said...

I'm sorry to hear that some not great thins have been happening. Hopefully all good news from here.