DS is poorly help please???

(1 Post)
Icebearsaysno Tue 04-Oct-16 10:16:31

DS is 7 and disabled. Will out me but hey ho !!! He has a rare gene mutation with only 2 other kids in the UK have!
He also has CP. he functions 18-24 months. He is non verbal.
He has been quiet and sleepy for 3 weeks. He needs 2 drugs to sleep usually. Hoes to bed st 7 with Chloral hydrate and melatonin. Will wake 2:30-3 and that is his morning. Hoes to school comes home. Bed again with the meds.
Found ear infection treated with antibiotics ... No change... Different antibiotics... No change. I asked for a swab... Found pseudomonas in his ear and 3 days of IV's. ( I've had to beg to have him seen because they just don't trust what I'm saying) sent home on more antibiotics. He has EDS too which means his skin is thin so it has broken down from all the poo. He was screaming in agony at bum change... Explained it's happens all the time he needs oramorph to control the pain. Refused ... Spend weekend with child in agony. Went back yesterday and they can't really do anything but did give oromorph and sent home. Today woken with fever, agitated wants to keep head under blanket. Had carpool at 7:30 temp went down and now it's up again. Phoned ward and they've asked if I want to bring him in? It's probBly virus as antibiotics would help anything else ! I feel like they've not trusted me at all or listened to me??? I know I'm not a Dr but I am his mum... They are making me second guess myself but I know something is still wrong !!!
Should I take him in or AIBU?

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