Still up and down!

Submitted by Kitty on Wed, 07/07/2010 - 20:03.

It's been a while since I blogged. As usual, things are a bit up and down in our house.

Our youngest has been having some bowel problems that GOSH have said is a flare up. We have been advised to try some medication changes and see how we go. He is also suffering really badly with his joints - it's horrible when he's in pain as there's so little I can do. I just rub them or put hot water bottles on them. He's starting hydrotherapy again in a few weeks so I'm hoping that helps.

His physio said it may be worth ruling out arthritis but this requires blood tests during a flare up. I haven't a clue how to go about this as I know my GP doesn't do blood tests in children. He's also dure blood tests at GOSH in September and I'm worried that if I get the arthritis test done now will the experience be so awful that he refuses to have it done again in September?

I do worry a bit that when they grow out of using the buggy (at 3 and 6 they are almost too big already) that we won't be able to go places with much walking as they (both have joint problems) can't manage it. I hope it won't limit their lives too much.

Our eldest son has been struggling - he has lost some weight and is constantly ill! he has had 5 sets of antibiotics since April! He's missd lots of school unfortunately. He hasn't been able to play with his school friends at lunchtime as much as normal because he says he is tired. We are trialling another supplement - Neocate Advance- to see if it gives him some energy. Although he objects to the taste, the dinner lady said he was a different child today and managed to run round with his friends! I'm so pleased. Just wish he didn't mind the flavour as it takes ages to get him to agree to drink it and I'm worried he'll suddenly refuse it like the last one.

He is also so tired as he keeps getting up so so early and we cant work out why. most mornings it's 5am but sometimes it's 4.30 and last week he got up twice at 3.30am! (which is quite tiring as our 3 year old gets up in the night). He just can't go back off to sleep. Poor thing.

Can't wait for the summer holls so we can all have a rest from the rush of the school run!