Lots of ill children etc!

after the infliximab was a lovely Easter with all the usual activities especially chocolate! including for Aaron and even for Josh who now has no soya lecithin since last year!
Aaron had a verucca that actually cleared up faster than ones his brothers have had despite the immune suppression!
Ethan had another ear check up and all is still good with average levels of hearing, yay!

Easter bunny

Aaron seemed to go downhill with his symptoms not long after the infusion with lots of diarrhea mucous and blood with some accidents, tummy aches, joint pains in knees as usual but also elbow and ankle, headaches etc. We wondered how he would last until the next dose of infliximab but at his gastro appointment she decided to take him off one of his initial meds as it was now redundant and this had the unexpected result of clearing up the afore mentioned symptoms! It turns out the listed side effects of the sulfasalazine were what he was suffering from, strange as they were the opposite of what it was meant to do, we guess he became intolerant of this with the addition of the stronger medicine - infliximab, to his little body.
At this appointment she was happy with Josh despite a blip over Easter. She is also finding out if Aaron needs his infusions closer together due to his symptoms (although these then settled) bloods were taken at the last infusion to see how quickly he is getting though it. She also looked at the little sores he has developing on his arms and legs mainly which could possible be psoriasis...

Taxi to their joint appointment

At the beginning of May Aaron had headache and fever and was sick once, and although this upset his tummy back to the problems again it actually settled fine which was such a relief after only just getting it sorted out! Still necessitated a trip to the drs due to his immune suppression.....


Candy floss at the fair

poorly Aaron

The following week Josh had extreme abdominal pains so much so that he couldn't stand for long and just sat on the sofa, by the next day it hurt to breathe and to the touch, he was sick a couple of times but by Monday the GP wanted him seen at Epsom hospital due to his history, where we spent hours waiting and then getting blood test and xrays. They had wanted to keep him in but he wasn't very keen so once they reviewed the tests, they let me take him home and keep an eye on him there. The blood showed slightly raised inflammatory markers and the xray a distended loop of bowel which he has had before, but in their words - not enough to need to call the surgeons! it eventually settled but took its time. We still don't know what it could have been, possibly a bug, as long as it doesn't happen again its ok, he's had 4 clear years from this sort of problem since his adhesion surgery!

poorly Josh

I squeezed in after these 2 weekends a lovely relaxing spa day which was well timed as yesterday was Aaron's 4th infusion and the 1st time I went up alone with him for it. All went smoothly and speedily, apart from the buses!


Aaron's Micky in the hospital MM clubhouse

infusion DVD time

Today is Ethan's turn, he is covered in a rash, possibly allergic but I don't know what to, but is still in quarantine away from Aaron just in case!