update

sorry its been a while, it seemed i had no main material for a post, just lots of bitty bits

• we saw our paed dr who was nice to touch base with (although 4 days before had we got a letter cancelling the appointment and rescheduling for september, turned out to be a clerical type error and we were slotted back in but annoying all the same). she agreed with charlotte's eye diagnosis and said that we should have been directed to sutton eye hospital and that it was a brave decision to send us home they normally do IV antibiotics to be safe. She also said we should just go ahead and do the allergy tests at epsom as although GOS wanted to do them they hadn't. 1hour later the bloods were taken!


• the double course of antibiotics had the inevitable effect on Josh's bowels having us get him up and change him and his bed every night, but perhaps the probiotic effect was noticable as we were expecting worse (not to say it wasn't bad, he did end up with a antifungal steroid nappy cream) the eye got better dramatically and quickly


• Ethan has been to ENT and is booked in for more grommits on Aug 7th, his hearing is abominable at the moment! he has also started 'summer school' a 12 week program of school introduction ready for september.


• apart from producing the stool sample GOS wanted at the start of half term which Tom rushed to Epsom for them to send (!) we had quite 'well' half term. still lots of diarrhea with no pattern i can see, but no prolonged patches, eating well and putting on weight


• Drs surgery want to talk re a letter from GOS, can't say what about though. never done that before so we are left wondering until 12th June


• we received a letter from GOS one saturday saying Josh was on the waiting list for an admission, seeing as we wern't excpecting anything this left us slightly concerned all weekend. turns out they are going to do a video capsule endoscopy (July 7th) to see the whole of the small bowel. i didn't realise fully last time they didn't see what i feel is the key part - where the original problems were.


• we got the allergy results back; slight allergy to milk and soya and a peanut allergy. eggs, fish, lamb, wheat fine. may try a milk free diet after the endoscopy 2.


• i'm trying a new heart medicene Ivabradine to see if it is more effective, and have set up a mum's support group


• Ethan has blood tests next week to check there is no underlying cause for his permanently enlarged tonsils

i think thats about it! i will update on the different bits when i have more info