Over the last few months we have had a lot of trips to the doctors, out of hours service or accident and emergency.

These visits have included suspected broken wrist, chicken pox, fingers shut in car doors, tonsillitis, blood in poo

Unfortunately this has meant that as well as Tim taking his regular medication, Sam has had to have antibiotics and other medication for his stomach. Trying to get Sam to take medication anyone within earshot may have suspected we were torturing him, luckily as time went on he did improve.
People advised various ways of getting him to take it willingly, and I’m sorry, but although I don’t generally agree with bribing children, when it comes to medication it was top of my list, so anyone who did suggest that one it really didn’t work, you just can’t bribe a child who has run out of the room before you have even got the stuff out of the fridge, is now cowering in a corner of a different room with their hands super-glued over their face.

But finally I have found the way to get him to take it.
At Tim’s last hospital appointment we were told to record all his bowel movements for a couple of weeks, then put him on the same medication that Sam has for his stomach.

Today was the first day that Tim had his, and with the risk of Tim winning the ‘race’ to finish the medicine first, Sam was a lot quicker to drink it, don’t tell anyone, but Tim did win, however if allowing Sam to think he did will make him take it again tomorrow he can think whatever he likes

taking medicineIt looks a great picture, both of them drinking their medicines with syringes lined up, I hate sorting medicines in this house at breakfast time at the moment.


Ultrasound scan

A few weeks ago we went to the doctor because Tim had a rash, nothing much but just better to get these things checked, it was diagnosed by phone as being viral (yes by phone!) but I was told that if I wanted it to be looked at then I could take him down.
Well I don’t know about you, but I am not keen on rashes being diagnosed by phone, so decided to take him down and I was so glad I did.
She throughly checked him over and confirmed it was a viral rash, but one of the first questions that she asked was if his stomach is always that bloated.

I wanted to cheer from the rooftops, finally someone was listening, or rather they had seen and actually agreed with me, you see the trouble is all the hospital appointments have been in the mornings before the bloating starts.

She wasn’t happy with it so said she would speak to his kidney consultant but would also refer him for an ultrasound scan.

So here we are this week he has had the ultrasound.
Everything mostly appeared normal, nothing to worry about kidney wise, but soo much gas that she couldn’t get a proper look at his liver.

So now to wait for an appointment with the doctor that referred him to discuss this.

As usual they were surprised how good he was, he initially didn’t want to take his coat of (not easy to scan through a coat!) but once he knew he wasn’t going to ‘win’ he led on the couch and didn’t move.

ultrasound certificate

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

When is blood ok in the urine?

Well I guess for most of you the answer is it is NEVER ok to have blood in the urine.

But as you will know by now Tim does not follow the same rules as most people.

Today we had 2 appointments at the hospital one with the dietician and the other with the kidney specialist.

The dietician said the usual, how’s it all going etc, so nothing to report there.

But Dr Houtman had a bit of different news today.
He said there was blood in the urine, which is nothing new, there is always blood in the urine and can be for months and months after the problems Tim has had, but he was really excited to tell us that is all there was in the urine,

BLOOD but NO protein

so I guess it is not so much that it is ok to have blood in the urine, but more that it is great that there is blood and nothing else, fingerscrossed we will soon be able to report that there is no blood either.

So after a long day going to the hospital straight from nursery, a bit of crying and screaming from Tim, but an amazingly well behaved Sam, I guess maybe it is time to wake them up.

3 Visits to the GP already this week!

It seems to be never ending at times.

So far this week I have been to the GP 3 (yes 3) times

Tim became unwell on Saturday night, generally unsettled and then a temperature appeared. All day Sunday he still had a temperature being over 39 all day, generally cuddly and a bit lethargic, so we kept him dosed up and gave cuddles where required.

Sunday night still with Temperature he was awake by 10pm and I ended up in bed with him through until 5am.

I popped into him Monday morning and he felt much cooler, so I decided that sleep was probably the best plan and when he woke up at around 10am he was much better, he got up, had breakfast and played quite happily.

Then the afternoon arrived and when I changed him it was obvious that the temperature had affected his kidneys again from the colour of his urine, so I phoned his consultant in Leicester Royal Infirmary for advice, they said as long as he seemed fine in himself then he didn’t need examining, but it would be useful to confirm what was in his urine.

So after long ‘discussions’ with a receptionist at our surgery I took a urine sample in. Later in the afternoon/evening (the boys were already in their pyjamas, so around 6.30) I receive a call from a Doctor, asking lots of questions and concerned about there being blood in his urine. After a chat between 3 doctors it was decided that they wanted to see him in the morning.

This morning we went to the appointment that the doctor had arranged last night, this seemed pretty much a waste of time to me as other than taking his temperature he wasn’t examined at all. I had taken another urine sample as requested, it was confirmed that there was still blood in it, as well as protein, but no white blood cells as would be expected with a infection. So we were just advised to keep an eye on him and bring him back if he got any worse. They are sending of the sample to see if there is any infection present.

When I went to collect Sammy from nursery Tim’s keyworker popped in to say they had used his inhaler, (which is only used every few months) I was there a while as Sam has french and before I left I was ‘visited’ again by Tim’s keyworker to say they really weren’t happy with how he was breathing. So next thing you know we are of to GP again, we went straight from nursery to the surgery and the doctor kindly saw us before surgery got going. He seemed fine, nothing to be heard on his chest, so no signs of infection. His breathing had settled, but this could well be because the inhaler was finally taking effect.

So once again we are just told to keep an eye on him and see how things develop.