(((( CeeCee ))))
This is a copy of your previous post. It is better to start a new thread when there's something new to announce, as posts tend to get more attention than when tagged onto a 'old' thread.
Hi there
Not sure I should be posting this on newly diagnosed any more - daughter had her appointment on the 17th Dec and the Rheumatolgist was fantastic! He asked all the right questions and for once I kept my mouth shut and told my daughter to open hers and tell her story instead of relying on me! There was a physio there along with another specialist and a nurse. Of course, my daughter was full of beans and in perfect health at the time! - However, the consultant was not fooled by this and was not convinced it was Lupus! I was pleased by his response - he was very concerned that she has a problem and he wants to get to the bottom of it - dont get me wrong - he has not ruled out Lupus but he is being thorough! We have a very quick appointment on the 9th January for a full days tests in Alder Hey in Liverpool UK - considering our consultation was on the 17th December I think that they are really worried about her condition - all the MRI scans have been recalled and I am at my whits end now! I will say again that my daughter has never shown any of the serious problems of Lupus - apart from one eye defect that would have gone unnoticed apart from her optician. Of course she has has had more than her fair share of symptoms such as Malar rash, Aleopocia, sickness, migraines, depression, severe mood swings, tiredeness UTI's etc etc but not had any really bad stuff that I read here. ( I may sound flippant but dont forget she also has underactive thyroid that can account fot alot of this too). She is no longer taking Tetralycyl under the orders of Alder Hey - think it may be Drug induced Lupus although I doubt that as she started that 6 months after the seizures.
Anyway - happy new year to everyone and thanks for help so far.
These hospital days are so draining all you want to do is zonk right out
It has got to be so hard dealing with a sick child and even harder when it's a teenager given that it's usually a tricky stage anyway. It must be a tremendous effort staying calm, strong, positive and reassuring for the child when your heart is breaking and you're worn out and anxious.
I haven't had to deal with lupus or any chronic disease just the usual crises with major teenage problems and that awful anxiousness you feel when they are taking make or break exams and so on when you can't help them. You have been through so much the past few years
I felt some wry amusement at Lola's comment about not liking being fussed over because my mother fussed so much over me and made such a big deal of anything I stopped telling her anything unless I had to.
It wasn't any comfort and just added to my own concerns. She would "poor- darling" me until I not only felt worse if I was unwell, but angry with her.
You'll often read on here how much even adults dislike over- solicitude.
You're right - the carer needs to be cared for too! I think it's a complicated topic and so much depends on the relationship, the larger family set up and what ways there might be for getting direct professional help which is often not much. It is excellent that the doctor gave her the chance to talk for herself and she should have the chance to see the doctor alone if she wishes for part of the consultation. You might need that too. Something to think about and fix up. I think children's hospitals might have psychologists to help with the special problems and family support ?
I hope you will get some strength here - often just being to talk about how you are feeling is a help.
If the vomiting continues you will need to see the GP to get it fixed, you'll know already that it's important she doesn't become dehydrated and if she's on any other meds they might not be absorbed and effective.
Your GP might have some ideas how you can each get support and as a family. You could possibly benefit from anti depressants and you should have a check up yourself. Don't neglect your own health - get checked for anemia and thyroid if you haven't already.
I hope you will recover soon from this ordeal and find activities with your daughter that you both enjoy to encourage partnership and togetherness, to take your minds off the worries and strengthen for the next round.
There is a young person's forum here - even if she doesn't want to post she might like to know how well other young people get on. Of course you might not want her reading your posts and she might not want you writing about her, so I don't know how you would get round that.
Bye for now - keep in as close touch as you like. Have a look at the Pediatric forum too. Maybe post on there. We do have a few parents of already diagnosed children. I think there's often private contacts through PMs.
Thinking of you and of your daughter
Good Luck
Clare
