jonnell
i dont have loads of advice i so wish i had, get them to swab her vajayjay(love that term) and see if she has a thrush infection,or a bacterial infection . and get them to check if any of her meds cause these side effects and possibly use something else.
I know your up the pole with worry about your little one, and i cannot imagine, my oldest has had asthma for a while and scalp psoriasis, my youngest had big constipation problems, which finally resolved, but ive not coped with your level of stress.
scottie makes a good point in reading elise`s diary, you may well learn alot and be able possibly to share some expereinces with her and her folks.
i dont know if there is a support group for parents with children with illnessses , that you could also join, so your amongst ppl who do know what it is like to be where you are, sure we all empathise, but none of us can realy sympathise with you, and it might do you good to be able to talk with ppl whose children have chronic issues, for your own sake, which is important as you need help too.
thats not to say we dont like helping you , we all know what sjs is like, pains us to think of a little one with it and we can give advice and support if we possibly can, but i do think a top up from a suport group for ppl in your position would be a bon for you, i think having another mother who knows where your at truly knows, would help you, and your important in all this just as much.
think of your little one daily as im sure many of us do, certainly got my head striahgt when i think how lucky ive been to get to 37 before im at stage your little one is at.
keep us informed and post up with your questions, you ll never be asking too much, for weve all needed help and will continue to do so, i think youve done yourself proud getting out there and finding as much information as you can for your little one, a mothers love eh ?? *hug* i just wish i knew more and could help more, but thoughts being sent to you , i am a reiki practitioner, and can now send distance healing to you both , or any of you in the family, which id be more than willing to do , im not saying its cured me, you get what you are meant to get from reiki, but its helped me cope and made me stronger within myself, if youd be in any way intrested fell free to Pm me.
let us know how the rheumy apointment goes, were all rooting for her
T x