Challenging Times...

Hi, we went to GOSH this week and have been told that we're to try one more medication (Salafalak) for two weeks and if there's no improvement he's being admitted the first week of March for a second colonoscopy and endoscopy :-(

My little one has taken a massive backward step...very, very swollen, as white as a sheet, mouth ulcers that just won't heal (been there for nearly 3 weeks now), tearful, clingy and is just lashing out at almost everyone he see's. I literally feel as though I can't control him when he's like this and he doesn't listen to a thing I say.

When I took the prescrition request (written by Dr Shah) to our Dr's, I was yet again met with suggestions that we cost them too much money with the amount and types of medications that he's on and that they weren't sure if they'll authorise it or not. Why is everything a constant battle?

I took him to his little gym class this week (perhaps I was a bit ambitious and should have given it a miss this week, but he asked to go) and two separate parents that I don't know made negative comments regarding his behaviour. I tried to keep smiling but it broke my heart that the think he's just a naughty boy, if only they knew my boy is in almost constant pain and that he is the bravest little man that I know. I held it together until they were out of sight and had to have a private cry when nobody could see me.

We've bad times on and off but I'm truly at my lowest ebb. I'm constantly on the edge of tears, have put on an immense amount of weight as all I do it find comfort in food and coffee.

Really hoping they do the parents seminar at this years allergy show, so I can ask lots of questions.

Please let 2012 be a good one for all of our brave, brave little ones xxxxxxxxxxx

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