Tests and more tests

skin prick tests

A couple of weeks ago we were at the hospital for an appointment with the allergy dietician.

Tim was very brave while they did the skin prick tests and took bloods.

He was tested for numerous things including, dairy, soya, nuts, coconut and gluten to name just a few.
Once again he has come back negative to them all, this does NOT mean he is not allergic, it just means that he is not anaphalytic to them, he still needs to avoid them and trial things occasionally, if and when he is completely fit and healthy. Currently when he ingests any of them he can have reactions ranging from moody, to rashes and breathing issues.

We are currently back to avoiding soya pretty much completely as we had been allowing more soya products in (soya lecithin) and he seems to have been having more issues.


Most importantly from the appointment we discovered that he has not gained weight in a long time, they had not been plotting it on a chart so no one had noticed, they are currently looking at the last 4months, but they are unable to go back any further than that as prior to that he was still recovering from the kidney issues.

So this is now our latest problem, trying to keep an eye on his weight, without making a big deal of food and meal times and hope he starts gaining soon.


This week we also ended up at the GP due to a rash which turned out to be viral, but she enquired about whether his stomach  is normally this swollen. I explained that we have mentioned to other consultants etc, but it swells everyday as the day goes on and all appointments are in the morning, currently the kidney specialists think is is allergy related and the allergy people don’t seem bothered, but I have been saying for a long time that it can’t be right for him to be swelling everyday.
So it was great to hear someone else say that they think there is something amiss.
She has said that she will contact the kidney team and discuss it with them, but she has also referred him for an ultrasound on his stomach, saying that if that doesn’t show anything then it would probably be worth getting him referred to a paediatric gastro specialist.

Once again we are in a limbo of waiting for appointments and see what happens next



Goodbye to 2014

I know I have been quiet for a while, I last posted just before Christmas, and then as I know you will understand things got hectic, we had 12 people here for for the few days around Christmas.

Then New Year arrived and I thought I would write a post, maybe a review of 2014 or similar, but it just wasn’t that easy. So this isn’t an exciting post, it is more a catch-up, I am just giving links back to what has been going on, as even reading through some of them myself is very emotional, so the thought of actually writing about some or it again, well lets just say it isn’t going to happen.

For anyone who has been following my blog for a while you will know we really haven’t had the best year (2014) in our household.

So here is a short run down

I suffered pancreatitis and ended up having my gall-bladder removed

Sam was diagnosed with a possible heart murmur, which luckily has turned out to be nothing

Then came the issues with Tim, we started with possible chicken pox, that by the time we left A&E was tachycardia (increased heart rate), heart murmur and low levels of hemoglobin (iron levels)

we thought he was having a reaction

Next thing you know the real ‘FUN’ began

we were discharged from hospital, readmitted, transferred, discharged, readmitted (anyone seeing a pattern?)

numerous visits and phonecalls with doctors  and hospitals

we added in more allergens 

So now for the positives

It has been hard but we have tried to stay positive this year,

due to everything going on Daddy and myself were both able to see Sam get his first swimming badge

we still managed to go on holiday even though I was only a couple of weeks post-op.

and after a year like ours even things like blood in urine, a positive hospital appointment, hearing Tim saying he wants to get dressed, and things like McDonalds can make us happy

sam tim 2014So that has to be one of the worst reviews of a year you will ever read, but it is the best you are going to get.

Now we move on, Tim has already had his first hospital appointment for 2015, so I will update on that over the next few days.

Here’s to a happy and healthy 2015